Special Care Units for People With Alzheimer's and Other … · Alzheimer's and Other Dementias:...

Special Care Units for People WithAlzheimer's and Other Dementias:Consumer Education, Research,

Regulatory, and Reimbursement Issues

August 1992

OTA-H-543NTIS order #PB92-228444

Recommended Citation:

U.S. Congress, Office of Technology Assessment, Special Care Units for People WithAlzheimer’s and Other Dementias: Conwmer Education, Research, Regulatory, andReimbursement Issues, OTA-H-543 (Washington, DC: U.S. Governrnent Printing Office,August 1992).

Foreword

Several million Americans have Alzheimer’s disease or another disease or condition thatcauses dementia. As our population ages, the number of people with these devastating diseasesand conditions will increase relentlessly. Families take care of individuals with dementia athome for as long as possible, but most individuals with dementia are likely to spend sometimein a nursing home in the often long course of their illness.

Until recently, little attention has been paid to the special needs of nursing home residentswith dementia. In many nursing homes, they have received and continue to receiveinappropriate care that exacerbates their cognitive impairments and behavioral symptoms andfurther reduces their quality of life. There has been a pervasive feeling that nothing positivecan be done for nursing home residents with dementia. More often than nondementedresidents, they have been overmedicated and physically restrained.

As awareness of Alzheimer’s and other dementing diseases has increased, innovativeapproaches to caring for people with dementia have been developed. Some experts haverecommended that nursing homes establish special units for their residents with dementia.OTA estimates that by 1991, 10 percent of all U.S. nursing homes had established at least onesuch unit.

Special care units promise to provide better care for individuals with dementia than theseindividuals would receive in nonspecialized nursing home units. On the other hand, existingspecial care units vary greatly, and many people believe that some special care units areestablished only for marketing purposes and actually provide nothing special for theirresidents.

This OTA report analyzes the available information about special care units for peoplewith dementia. It discusses ways in which the Federal Government could encourage andsupport what is positive about special care units and at the same time protect vulnerablepatients and their families from special care units that actually provide nothing special for theirresidents.

This is OTA’s third report on Alzheimer’s-related public policy issues. Two previousOTA reports, Losing a Million Minds: Confronting the Tragedy of Alzheimer’s Disease andOther Dementias and Confused Minds, Burdened Families: Finding Help for People WithAlzheimer’s and Other Dementias, have focused on biomedical and health services researchand other components of the care needed by individuals with dementia. OTA hopes that thesereports help to define and clarify the problems raised by Alzheimer’s and other dementias andidentify ways in which the Federal Government can assist in solving them.

OTA was aided in the preparation of this report by members and staff of the Alzheimer’sAssociation, staff of the National Institute on Aging, special care unit researchers, Stateofficials, and others. OTA wishes to thank all these individuals. OTA particularly wishes tothank Nancy Mace for her valuable contributions to this and OTA’s two previous reports onAlzheimer’s and other dementias. As with all OTA reports, the content of this report is the soleresponsibility of the agency and does not necessarily reflect the views of these individuals orthe members of the Technology Assessment Board.

/j/AA7# -.

JOHN H. GIBBONSDirector

. . .Ill

Special Care Units for People With Alzheimer’s and Other Dementias:Consumer Education, Research, Regulatory, and Reimbursement Issues

OTA Project Staff

Roger C. Herdman, Assistant Director, Health and Life Sciences Division

Clyde J. Behney, Health Program Manager

Project Staff

Katie Maslow, Senior Analyst

Kerry Kemp, Division Editor

Support Staff

Marian Grochowski, Office Administrator

Eileen Murphy, P.C. Specialist

Kim Holmlund, Word Processing Specialist

Kelly Faulks, Secretary

Contractors

Joan Hyde, University of Massachusetts at Boston

Nancy Mace, Pacific Presbyterian Medical Center

ContentsPage

Chapter 1: Overview and Policy Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3

Chapter 2: Nursing Home Residents With Dementia:Characteristics and Problems . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 57

Chapter 3: Special Care Units for People With Dementia:Findings From Descriptive Studies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 83

Chapter 4: Special Care Units for People With Dementia:Findings From Evaluative Studies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 111

Chapter 5: Regulations and Guidelines for Special Care Units . . . . . . . . . . . . . . . . . . . . . 133

Chapter 6: Regulations and Interpretations of Regulations That InterfereWith the Design and Operation of Special Care Units . . . . . . . . . . . . . . . . . . . . . . . . . . . 159

Appendix A: Diseases and Conditions That Cause Dementia . . . . . . . . . . . . . . . . . . . . . . 173

Appendix B: Conceptual and Methodological Issues in Research onSpecial Care Units . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 174

Appendix C: Acknowledgments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 176

References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 178

Chapter 1

Overview and Policy Implications

ContentsPage

INTRODUCTION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3Congressional Requests . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . . . . . . . 4Policy Context . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4Organization of the Report . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9

NURSING HOMES AND DEMENTIA . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9The Clinical Syndrome of Dementia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9The Prevalence of Dementia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . * . . . . . . . . . . . . . . 9Nursing Home Use by Individuals With Dementia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10Characteristics of Nursing Home Residents With Dementia . . . . . . . . . . . . . . . . . . . . . . . . 10Problems in the Care Provided for Nursing Home Residents With Dementia . . . . . . . . 12Negative Consequences for Nursing Home Residents With Dementia, Their

Families, Nursing Home Staff Members, and Nondemented NursingHome Residents . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14

SPECIAL CARE UNITS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .15Six Theoretical Concepts of Specialized Dementia Care and Their Implications

for Staff Composition and Training and the Individualization of Care . . . . . . . . . . . . . 16Ideas About Special Care Units From Other Countries . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23Findings From Research on Special Care Units . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24

THE REGULATORY ENVIRONMENT FOR SPECIAL CARE UNITS . . . . . . . . . . . . . . 32The Nursing Home Reform Provisions of OBRA-87 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33Existing State Regulations for Special Care Units . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34

POLICY IMPLICATIONS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .35Implications for Consumer Education About Special Care Units . . . . . . . . . . . . . . . . . . . 35Implications for Research on Special Care Units . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37Implications for Government Regulation of Special Care Units . . . . . . . . . . . . . . . . . . . . . 39Implications for Reimbursement for Special Care Units . . . . . . . . . . . . . . . . . . . . . . . . . . . 42

LEGAL AND ETHICAL ISSUES IN SPECIAL CARE UNITS . . . . . . . . . . . . . . . . . . . . ..43Issues With Respect to Locked Units . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 44Issues With Respect to Admission and Discharge . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 44Issues With Respect to Consent for Research Participation . . . . . . . . . . . . . . . . . . . . . . . . . 45

OTHER ISSUES OF IMPORTANCE TO NURSING HOME RESIDENTSWITH DEMENTIA . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 47The Availability of Physicians’ Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .47The Availability of Mental Health Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 48The Use of Psychotropic Medications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .49

ALTERNATES TO SPECIAL CARE UNITS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .49Initiatives To Reduce The Use of Physical Restraints for All Nursing Home Residents. 50Dementia Training Programs for Nursing Home Staff Members . . . . . . . . . . . . . . . . . . . . 50Specialized Programs for Residents With Dementia in Nonspecialized Nursing

Home Units . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 51Specialized Living Arrangements Outside Nursing Homes . . . . . . . . . . . . . . . . . . . . . . . . . 51

CONCLUSION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 52

BoxesBOX Pagel-A. A Special Care Unit in Lynden, Washington . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5l-B. The Development of Excess Disability in a Nursing Home Resident With Dementia. 14l-C. The Use of Behavioral Interventions With a Nursing Home Resident With Dementia. 18

Chapter 1

Overview and Policy Implications

INTRODUCTIONAt least half of all nursing home residents in the

United States have dementia. As awareness ofAlzheimer’s disease and other diseases that causedementia has increased in recent years, so havecomplaints and concerns about the quality andappropriateness of the care provided for individualswith dementia by most nursing homes. In responseto these complaints and concerns, some nursinghomes have established a special care unit-that is,a physically separate unit in the nursing home thatprovides, or claims to provide, care that meets thespecial needs of individuals with dementia. Suchunits are referred to generically as special care units,dedicated care units, Alzheimer’s units, or dementiaunits. OTA uses the term special care units in thisreport.

The number of special care units for individualswith dementia has increased rapidly over the pastfew years. No comprehensive data are available onthe number of special care units before 1987, butinformation from several studies indicates that thegreat majority of existing special care units wereestablished after 1983 (181,413,485). The frostcomprehensive data on special care units in thiscountry were collected in 1987, as part of theNational Medical Expenditure Survey. That surveyfound that 1668 nursing homes—8 percent of all

—had a special care unit for individu-nursing homesals with dementia in 1987, and that these special careunits accounted for more than 53,000 nursing homebeds (249). The survey also found that an additional1444 nursing homes planned to establish a specialcare unit by 1991, and 535 of the nursing homes thatalready had a special care unit in 1987 planned toexpand the unit by 1991. If all these plans hadmaterialized, more than 3100 nursing homes—14percent of all nursing homes in the United States—would have had a special care unit in 1991, andalmost 100,000 nursing home beds would have beenin special care units.

When published in 1990, the figures from the1987 National Medical Expenditure Survey sur-

prised researchers and others because they weremuch higher than any previous estimates. Twostudies conducted since then indicate that the truenumber and proportion of nursing homes with aspecial care unit are probably somewhat lower(194,247). On the basis of these studies, OTAestimates that 10 percent of all U.S. nursing homeshad at least one special care unit in 1991.1 Regard-less of the precise figures, however, it is clear that thenumber and proportion of nursing homes with aspecial care unit are growing rapidly.

The proliferation of special care units creates bothproblems and opportunities for individuals withdementia, their families, and many other people andorganizations that have an interest in the quality andappropriateness of nursing home care for individualswith dementia. These other interested parties in-clude: nursing home administrators and staff mem-bers who provide care for individuals with dementiaboth in and out of special care units; physicians,nurses, social workers, hospital discharge planners,community agencies, Alzheimer’s Association chap-ters, and other voluntary organizations that referpeople with dementia and their families to nursinghomes; and nursing home licensing and certificationofficials, nursing home surveyors, and long-termcare ombudsmen who are responsible for regulatingand monitoring the quality of nursing home care.

The problems created by the proliferation ofspecial care units are due primarily to the lack ofagreement about what a special care unit is or shouldbe and the related lack of standards to evaluatespecial care units. Existing special care units varygreatly in every respect, including their guidingphilosophy, physical design, staff composition, staff-to-resident ratio, activity programs, and patient carepractices (64,181,194,199,232,256,275,332,4 13,485,494). Despite this variation, the operators of virtu-ally all special care units express confidence thatthey are providing appropriate care for their resi-dents. According to researchers who studied thedifferences among special care units:

The differences are of such significance that theyappear to place special units in direct opposition to

1 As discussed later in the chapter, tbis number includes nursing homes that place some of their residents with dementia in a physically distinct groupor cluster in a unit that also serves some nondemented residents.

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4 ● Special Care Units for People With Alzheimer’s and Other Dementias

each other. Nevertheless, without exception, theirproponents have hailed the success of the units (332).

Many people have told OTA that some nursinghomes that have a special care unit just use the wordsspecial care as a marketing tool and actually provideno special services for their residents. Most nursinghomes charge more for care in their special care unitthan in other parts of the facility (413,494). In specialcare units that provide no special services, individu-als with dementia and their families may pay morebut receive no better care than they would in anotherunit in that nursing home or a different nursinghome. At worst, they may pay more and receiveinferior care in the special care unit.

Many families of individuals with dementia areextremely concerned about the quality and appropri-ateness of services they may use for these individu-als (166,5 13). As a result, they are likely to respondenthusiastically to claims of “special care. ’ With-out standards by which to evaluate special care units,families and individuals and organizations that referpatients and their families to nursing homes cannotknow with any certainty whether the units areproviding better care than other nursing home units.

Despite these problems, the proliferation of spe-cial care units also creates opportunities for individ-uals with dementia, their families, and others whoare concerned about the quality and appropriatenessof the nursing home care available to these individu-als. Even without standards by which to evaluate theunits, it is obvious to all observers that some specialcare units are providing better care for their residentswith dementia than these individuals would receiveinmost nursing homes. One such unit is described inbox l-A.

The proliferation of special care units means thatfor the first time in the United States there arenumerous nursing homes in which administratorsand staff members are concentrating on developingbetter methods of care for their residents withdementia. This attention to the special needs ofnursing home residents with dementia reverses thelong-standing reality in many nursing homes inwhich the special needs of these residents have notbeen recognized and the residents frequently havenot even been identified as individuals with demen-tia.

This OTA report discusses the complaints andconcerns about the care provided for nursing home

residents with dementia that have led to the develop-ment of special care units, the theoretical conceptsthat underlie their design and operation, and thefindings of studies that describe and evaluate them.The report analyzes the problems and opportunitiescreated by the proliferation of special care units anddiscusses the ways in which government has re-sponded or could respond to these problems andopportunities.

Congressional Requests

This report was requested by Senator DavidPryor, chairman of the Senate Special Committee onAging, and Congresswoman Olympia J. Snowe,ranking minority member of the Subcommittee onHuman Services of the House Select Committee onAging. The congressional letters of request for thereport stress the need for information about specialcare units to inform Federal policy with respect toconsumer education, research, regulation, and reim-bursement for special care units. CongresswomanSnowe noted the lack of information about the costand effectiveness of special care units and stressedthe need for quality standards to help families andothers evaluate the units and assess their options fornursing home care for an individual with dementia.Senator Pryor noted the problem of overuse andmisuse of physical restraints in nursing homes andasked whether restraints are used less often inspecial care units and, if so, what alternatives torestraints are being used.

Policy Context

Nursing home care for individuals with dementiais an important public policy issue for three reasons.One reason is that a large number and proportion ofnursing home residents have dementia. The 1985National Nursing Home Survey, a large-scale surveyof a nationally representative sample of nursinghomes, found that 696,800 nursing home residents—47 percent of all residents-had dementia (469). The1985 survey also found that 922,500 nursing homeresidents--62 percent of all residents—were sodisoriented or memory-impaired that their perform-ance of the activities of daily living was impairednearly every day (467). The 1987 National MedicalExpenditure Survey, which also included a nation-ally representative sample of nursing homes, foundthat 637,600 nursing home residents-42 percent ofall nursing home residents—had dementia (237).These figures are based on judgments by nursing

Chapter l-Overview and Policy Implications .5

Box 1-A—A Special Care Unit in Lynden, Washington

The Christian Rest Home, a 150-bed nursing home in Lynden, WA has had a special care unit since 1988. The15-bed special care unit was established because of staff concerns about the safety and well-being of residents withdementia who wander or have other behavioral symptoms that cannot be handled on the facility’s regular units.

The special care unit consists of resident bedrooms, an activity/dining area, and an enclosed outdoor courtyard.Three physical changes were made to the building to create the unit: 1) a set of doors was installed in an existing

unit to partition off the resident bedrooms and the activity/dining area; 2) a door was made in an exterior wall togive the residents access to the enclosed courtyard; and 3) keypad-operated locks were installed on the exit doors;the doors open when a number code is punched in on the keypad; the doors open automatically if the fire alarm goesoff. These physical changes cost less than $5000.

The special care unit functions as a self-contained entity, but technically it is part of an adjacent unit.Washington State regulations require each nursing home unit to have a separate nurses’ station, a separate shower,a separate bathroom for staff, and a separate utility room. To avoid the cost of these separate facilities, the specialcare unit is considered part of the adjacent unit. Medications, medical treatments, and rehabilitative services for thespecial care unit residents are delivered from the nurses’ station on the adjacent unit.

Some residents of the special care unit have been transferred to the unit from other parts of the nursing home,usually because they wander or have other behavioral symptoms that are more easily handled on the special careunit. Other residents have been admitted directly from home. Although all the special care unit residents havedementia in the opinion of the facility staff, a few have not had a diagnosis of dementia in their medical records,

The objectives of the unit are to assure the residents’ safety, to reduce agitation and behavioral symptoms, tomaintain independent functioning, and to improve the residents’ quality of life. The staff members perceive residentagitation and behavioral symptoms as meaningful expressions of feelings and unmet needs. They attempt tounderstand and respond to those feelings and needs, in the belief that by doing so, they will reduce agitation andbehavioral symptoms and improve the residents’ quality of life.

The unit has a relaxed atmosphere. The residents appear calm and contented. They wander freely around theunit and respond to and sometimes initiate verbal interactions with staff members and visitors, Although many ofthe residents exhibited severe behavioral symptoms before coming to the unit, the unit staff reports that thesesymptoms are relatively easily managed in the special care unit.

The only type of physical restraint that is used on the unit is a geriatric chair with a tray table that keeps aresident from getting up. These ‘geri-chairs’ are used only temporarily and only with a doctor’s order. Psychotropicmedications are used sparingly. They are used in low doses and only after other, behavioral interventions have beentried. On Jan. 13, 1992,7 of the 15 residents were receiving psychotropic medications, including 4 residents whowere receiving antipsychotic medications.

Formal and informal activity programs are conducted on the unit. Each afternoon there is a formal activityprogram, such as a weekly Bible study and music group, a weekly reminiscence group, a weekly “validation”group, and “high tea”-a Monday afternoon event with real china and lace tablecloths. Other activities, such asfood preparation and singing, take place informally on the unit. One resident who likes to fold laundry is encouragedto do SO.

Each morning, there is a half-hour hymn sing for all residents of the nursing home. Most of the special careunit residents are taken to this activity. In the afternoons, a few of the special care unit residents are taken to whateveractivity program is scheduled for the facility as a whole.

Family members are welcome on the unit at any time. The staff knows the residents’ families and involves themindecisions about the residents’ care. The staff reports that family members often thank them for the help they givethe residents and the emotional support they give the family members. Two formal events-a Thanksgiving potlucksupper and a summer barbecue-involve all the unit residents and their families.

During the day, the staff on the special care unit consists of one registered nurse, who functions as the unitcoordinator, and two muse aides. A licensed practical nurse and two other nurse aides take over for the evening shift.Since staff consistency is considered important for the unit, the unit staff members generally are not rotated to otherunits, although staff rotation is the norm in the rest of the facility. The special care unit staff members work as ateam, with little apparent difference in status between the nurses and aides.

(Continued on next page)


Box l-A—A Special Care Unit in Lynden, Washington-(Continued)

Until recently, the unit had no separate staff for the night shift (11:00 p.m. to 7:O0 &m.). Before being admittedto the special care unit, many of the residents had been awake, agitated, and difficult to manage at night. Once theycame onto the unit, these individuals began to sleep through the night, and the facility found it was possible to leavethe unit doors open and have the unit supervised by a staff member on the adjacent unit. Nevertheless, as ofDecember 1991, the facility had decided to assign an aide to the unit for the night shift.

The unit administrator and the facility’s staff development coordinator stress the importance of training for thespecial care unit staff, but they place greater emphasis on staff attitudes. The unit administrator believes there arepeople who cannot be trained to work effectively on the special care unit because their attitudes and personalitiesare not suited to the unit. Both the unit administrator and the staff development coordinator stress the need for aflexible, “trial and error,” approach to dealing with an individual resident’s problems and for staff members whocan implement this approach.

Several individuals besides the unit staff members are involved in the care of the residents. The weekly Biblestudy and reminiscence groups are run by staff of the facility’s Therapeutic Recreation Department. The weeklyvalidation group is run by the director of the facility’s Social Services Department, who is a psychiatric nurse. Shealso works with the geriatric mental health team from the local community mental health center to assess andrespond to residents’ mental health needs. A monthly staff meeting is held to discuss problems and ideas amongthe special care unit staff and other individuals who are involved in the residents’ care.

Special care unit residents are discharged from the unit when the staff considers that the residents can no longerbenefit from the unit. The unit discharge poilcies are explained to family members when a resident is admitted, butmany family members are upset when their relative is moved to a different unit, Several spouses of former specialcare unit residents have created an informal support group that meets almost daily in the facility, presumably toreplace the emotional support they previously received from the unit staff.

Discharges are hard on the unit staff members, since they often become attached to the resident and theresident’s family. The facility believes, however, that it is important to make space available in the unit for otherindividuals who will benefit from it. Priority is given to individuals who are at risk because of wandering.

The Christian Rest Home is a private, nonprofit facility. The specia1 care unit serves both Medicaid and privatepay residents. Until January 1992, there was no additional charge for care in the unit. Starting in January 1992,private pay residents are charged $10 more per day in the special care unit than they would be charged in other unitsin the facility. The special care unit has a waiting list, as does the facility as a whole.

SfXJRC!E: Angie Brouwer, Adtmms‘ - trator, Christian Rest Home, Lynde~ WA, personal communicatio~ Jan. 13, 1992; Linda Jager, RN, StaffDevelopment Coordinator, Christian Rest Home, Lynde& WA, personal communications, Oct. 19, 1990, Dec. 30, 1991, Jam 13,1992; Betty LOU Rau, RN, Day Charge Nurse, Special Care Uni$ Cbristiart Rest Home, Lyndeq WA, personal communications, Oct.19, 1990, Dec. 30, 1991; Jennifer Johnson, RN, Director of Social Services, Christian Rest Home, Lynde~ WA personalcommunications, Oct. 19,1990, Jan 13, 1992.

home staff members about the residents’ mentalstatus. Several small-scale studies based on compre-hensive medical and psychiatric evaluations havefound that an even higher proportion of residents (67to 78 percent) have clinically diagnosable dementia(82,389,390).

The second reason nursing home care for individ-uals with dementia is an important public policyissue is that government expenditures for nursinghome care for individuals with dementia are substan-tial. In 1990, total expenditures for nursing homecare from all sources were $53.1 billion. Federal,

State, and local government expenditures accountedfor slightly more than half (52 percent) of thatamount (250).2 Excluding expenditures for the careof individuals in facilities for the mentally retarded,total government expenditures for nursing homecare were $22.8 billion. Individuals with dementiatend to be among those who stay longest in nursinghomes and so are most likely to become eligible forgovernment reimbursement through Medicaid(229,258,465). As a result, government probablypays for more than half of all nursing home care forindividuals with dementia. Since individuals withdementia constitute at least half of all nursing home

zTotalgov ernment expenditures for nursing home care were $27.7 billion in 1990. This amount included $17.2 billion in Fedeml expemhms ($2.5billion from Medicare, $13.7 billion ffom Medicaid, and $1.0 billion from other sources, e.g., the Department of Veterans Affairs) and $10.5 billion inState and local government expenditures, virtually all of which are Medicaid expenditures (250).

Chapter l-Overview and Policy Implications ● 7

residents, OTA estimates that government expendi-tures for nursing home care for individuals withdementia amounted to more than $11 billion in1990.3

The third reason nursing home care for individu-als with dementia is an important public policy issueis that government is extensively involved in regu-lating nursing homes. The Federal Governmentregulates nursing homes that participate in theMedicare or Medicaid programs. In 1985,75 percentof all nursing homes participated in one or bothprograms, and these participating facilities ac-counted for 89 percent of all nursing home beds(467). All States also regulate nursing homes.

Complaints and concerns about the quality andappropriateness of the nursing home care providedfor individuals with dementia are pervasive. Giventhese complaints and concerns and government’sextensive role in regulating nursing homes andpaying for nursing home care, the claim of specialcare unit operators and others that special care unitsprovide better care for individuals with dementiadeserves the attention of policymakers.

The existence and proliferation of special careunits raise four policy questions. One questionpertains to consumer education. The Alzheimer’sAssociation and several other organizations havedeveloped informational brochures and guidelinesto assist families and others in evaluating specialcare units.4 New Hampshire has also taken thisapproach (325). The policy question is what, if any,additional steps government should take to informconsumers about special care units.

The second policy question pertains to the ade-quacy of government funding for research on specialcare units. Until recently, Federal agencies hadfunded very little research on special care units. Inthe fall 1991, the National Institute on Aging fundednine special care unit studies through its “SpecialCare Units Initiative,’ and a tenth study was fundedthrough the initiative in 1992. When the results ofthese studies are available in a few years, they willgreatly expand knowledge about special care units.In the meantime, it is important to consider whether

additional government-funded research is needed,and if so, on what topics.

The third policy question pertains to regulation ofspecial care units. As of early 1992, six States—Colorado, Iowa, Kansas, Tennessee, Texas, andWashington-had added requirements for specialcare units to their general regulations for all nursinghomes. Five States—Nebraska, North Carolina,New Jersey, Oklahoma, and Oregon-were devel-oping regulations for special care units, and moreStates were considering doing so. The policy ques-tion is whether the Federal Government or otherStates should develop special regulations for specialcare units.

Many special care unit operators and others say itcosts more to operate a special care unit than anonspecialized nursing home unit (12,64,377,477,485).Thus, the fourth policy question is whether govern-ment should pay more for the care of eligibleindividuals in special care units than in other nursinghome units.

Until the publication in 1990 of figures on thenumber of nursing homes that had a special care unitin 1987, most commentators believed there might beseveral hundred special care units in the UnitedStates. It was reasonable then to regard special careunits as a relatively small phenomenon and toconsider government policies for special care unitsin that context. Recent data suggesting that 10percent of all nursing homes had a special care unitin 1991 indicate that special care units are not a smallphenomenon. The rapid proliferation of special careunits means such units are likely to become a muchlarger phenomenon. Government policies for specialcare units should be considered in this new contextand in relation to the long-range possibilities andsocietal objectives for special care units.

Various long-range possibilities for special careunits can be imagined. One possibility would be forall nursing home residents with dementia to be caredfor in special care units (or in whole nursing homesdevoted exclusively to serving individuals withdementia). To OTA’s knowledge, no one advocatesthis alternative, in part because of the huge numberof individuals involved< 37,600 to 922,500 indi-

S Some and per~ps my nmsing home residents with dementia are admitted for reasons other than or in addition to their dementia. OTA’S estimaterefers to the overall cost to government of nursing home care for residents with dementia regardless of the primary reason for their admission.

4 See, for exmple, Mace and @@er> “Selecting a Nursing Home With a Dedicated Dementia Care UniG” Akheimer’s Disease and RelatedDisorders Association (276).


viduals according to national surveys-and the costand other implications of creating a whole separatenursing home industry to serve them.

A second possibility would be for special careunits to serve only certain types of nursing homeresidents with dementia—for example, residentswith behavioral symptoms or residents in a particu-lar stage of their dementing illness. To implementthis alternative would require a rationale for deter-mining which types of residents with dementiashould be in special care units and criteria foridentifying these individuals.

A third possibility would be for special care unitsto serve: 1) individuals with dementia whose fami-lies choose to place them in the unit for any reason,including ability to pay, and 2) individuals thenursing home chooses to place in the unit for anyreason, including ability to pay. In this scenario, thetotal number of special care units and the numberand types of individuals with dementia who arecared for in these units would be determined in thefuture, as they are now, by market demand and thedecisions of individual nursing home administratorsand staff members.

A fourth possibility would be for special careunits to function as research settings to develop andevaluate methods of care for individuals withdementia. Once shown to be effective, the methodsof care developed in special care units could beincorporated into the care practices of all nursinghomes, thus potentially benefiting all residents withdementia.

Government policies adopted now with respect toconsumer education, research, regulation, and reim-bursement for special care units will influence whichof these long-range possibilities becomes the futurereality. Which of the long-range possibilities isdesirable depends on several factors, the mostimportant of which are:

●

●

●

the effectiveness of special care units in generaland for particular types of individuals withdementia;the relative cost of caring for individuals withdementia in special care units vs. nonspecial-ized nursing home units; andthe impact of the different long-range possibili-ties on nondemented nursing home residents.

By definition, special care units segregate individ-uals with dementia from other nursing home resi-

dents. Some commentators believe this segregationbenefits both demented and nondemented nursinghome residents. Other commentators believe thatalthough segregation may benefit nondementedresidents, it will result in poorer care for residentswith dementia who will, in effect, be warehoused’in segregated units. In the view of these commenta-tors, the anticipated negative effects of segregatingnursing home residents with dementia outweigh anypossible positive effects of the units. Some of thelatter commentators are particularly disturbed by thefact that most special care units are either locked or“secured” in some other way so that residents withdementia cannot get out. The reactions of thesecommentators to proposed government policies forspecial care units are likely to reflect their objectionsto locked units rather than to special care units per se.

Finally, in considering government policies forspecial care units, it is important to note that theproliferation of special care units is occurring at thesame time as numerous other government andnongovernment initiatives that are likely to improvethe care of nursing home residents with dementia orprovide them with alternatives to nursing home care.These initiatives include the following:

●

●

●

initiatives intended to improve the care of allnursing home residents, including nursing homeresidents with dementia, e.g., the regulatoryand other changes associated with implementa-tion of the nursing home reform provisions ofthe Omnibus Budget Reconciliation Act of1987 (OBRA-87), and separate but relatedefforts to create ‘restraint-flee’ nursing homes;

initiatives intended to improve the care ofindividuals with dementia in any nursing homeunit, e.g., training programs for nursing homestaff members, special activity and other pro-grams for residents with dementia in nonspe-cialized units, and the development of effectivestrategies for resident assessment, care plan-ning, and treatment of behavioral symptoms;and

initiatives intended to provide appropriate careoutside nursing homes for individuals withdementia, e.g., specialized residential care pro-grams inboard and care facilities, group homes,and assisted living facilities; specialized adultday programs; and specialized in-home serv-ices.


This OTA report focuses on special care units innursing homes. A full evaluation of the initiativeslisted above is beyond the scope of the report,although the implications of OBRA-87 for nursinghome residents with dementia are discussed in thischapter and at greater length in chapter 5, and someof the other initiatives are discussed briefly at theend of this chapter. Ultimately, government policiesfor special care units should be considered in thecontext of these other initiatives which may providealternate or even better ways of accomplishing someof the same objectives as special care units.

Organization of the Report

The remainder of this chapter summarizes OTA’sfindings with respect to the characteristics of nursinghome residents with dementia and problems in thecare they receive in many nursing homes, thecharacteristics of existing special care units, theavailable information about their effectiveness, andthe regulatory environment for special care units.The implications of these findings for governmentpolicies about special care units are discussed. Thechapter also discusses several topics not addressedelsewhere in the report, including the theoreticalconcepts of specialized care for individuals withdementia and legal and ethical issues related tospecial care units.

Chapter 2 discusses the prevalence of dementia innursing homes, the characteristics of nursing homeresidents with dementia, and the most frequentlycited complaints and concerns about the nursinghome care provided for these individuals. Chapters3 and 4 analyze the results of the available descrip-tive and evaluative studies of special care units.Chapter 5 discusses the government regulations thatapply to special care units, including the specialrequirements that are now in effect in six States, andthe guidelines for special care units that have beendeveloped by various public and private organiza-tions. Chapter 6 analyzes the problem of governmentregulations that discourage innovation in the designand operation of special care units.

NURSING HOMESAND DEMENTIA

Because of the aging of the U.S. population, thenumber of individuals with Alzheimer’s disease andother diseases that cause dementia is growingrapidly. The proportion of individuals with dementia

that is in nursing homes now or will ever be innursing homes is not known, but it is likely that mostindividuals with dementia will spend some time ina nursing home in the course of their illness. Theseindividuals constitute the pool of potential users ofspecial care units.

This section provides background informationabout the clinical syndrome of dementia and itscauses, the prevalence of dementia, and the use ofnursing homes by individuals with dementia. Itdescribes the characteristics of nursing home resi-dents with dementia and discusses the problems inthe care they receive in many nursing homes and theimpact of those problems on the residents, theirfamilies, nursing home staff members, and nonde-mented nursing home residents.

The Clinical Syndrome of Dementia

Dementia is a clinical syndrome characterized bythe decline of cognitive abilities in an alert individ-ual. By definition, dementia involves some degree ofmemory loss. Other cognitive abilities that arefrequently diminished or lost in dementia includejudgment, learning capacity, reasoning, comprehen-sion, attention, and orientation to time and place andto oneself. Language functions, including the abilityto express oneself meaningfully and to understandwhat others communicate, are usually also affected.

Dementia can be caused by many diseases andconditions (see app. A). Alzheimer’s disease is themost common cause of dementia, accounting for 50to 80 percent or more of all cases (131,227,448). Thesecond most common cause of dementia is multiplesmall strokes that lead to multi-infarct dementia.

Alzheimer’s disease and most other diseases andconditions that cause dementia are progressive. Overtime, as individuals with these diseases and condi-tions lose cognitive abilities, they become increas-ingly unable to care for themselves independently.Eventually most individuals with dementia require24-hour supervision and assistance with everyaspect of their daily lives.

The Prevalence of Dementia

OTA estimates that there are now about 1.8million people with severe dementia in the UnitedStates and an additional 1 to 5 million people withmild or moderate dementia (458). The results of astudy conducted in East Boston in the early 1980ssuggest that as many as 3.75 million people may


have Alzheimer’s disease at all levels of severity(129), but some researchers and clinicians considerthis estimate high.

The prevalence of dementia increases dramatic-ally with age. OTA estimates that the prevalence ofsevere dementia increases from less than 1 percentof people under age 65, to about 1 percent of thoseage 65 to 74,7 percent of those age 75 to 84, and 25percent of those over age 85 (458). It has beenhypothesized that the incidence of new cases ofdementia may level off in individuals over age 85,but followup data from the East Boston study andother sources indicate that the incidence of dementiacontinues to increase (130,495).

The U.S. population over age 65 is growing fasterthan younger age groups, and the 85+ age group isgrowing faster than other segments of the olderpopulation. As a result, the number and proportionof individuals with dementia in the population aregrowing rapidly.

Nursing Home Use by IndividualsWith Dementia

The proportion of individuals with dementia thatis in a nursing home at any one time is not known.Nor is it known what proportion of individuals withdementia will ever be in a nursing home in the courseof their illness.

On the basis of figures from the 1985 NationalNursing Home Survey--i.e., 696,800 nursing homeresidents who had senile dementia or chronic ororganic brain syndrome and 922,500 nursing homeresidents who were so disoriented or memory-impaired that their performance of the activities ofdaily living was impaired nearly every day—andOTA’s estimates of the prevalence of dementianationwide—i.e., 1.8 million Americans who havesevere dementia, and 1 to 5 million who have mildor moderate dementia--one could estimate thatanywhere from 10 to 33 percent of individuals withdementia of any degree of severity are in a nursinghome now. If one surmises that only individuals withsevere dementia are likely to be in a nursing home,one could estimate that anywhere from 39 to 51percent of individuals with severe dementia are in anursing home now.

A much larger proportion of individuals withdementia are likely to spend some time in a nursinghome in the course of their illness, although some

individuals with dementia will never be in a nursinghome. Recent projections from data on elderlyindividuals who died in 1986 suggest that 43 percentof all Americans who reached age 65 in 1990 willspend some time in a nursing home before they die(230). Individuals with dementia are far more likelythan elderly individuals in general to be admitted toa nursing home, and it may be that almost allindividuals with dementia will spend some time ina nursing home in the course of their illness.

The proportion of individuals with dementia thatis in a nursing home at any given time and theproportion that will be in a nursing home at sometime in the course of their illness could increase ordecrease as a result of several factors. These factorsinclude the availability of appropriate residentialcare in alternate settings, such as board and carefacilities; the availability of appropriate in-home andcommunity services; and Medicaid eligibility, cov-erage, and reimbursement policies that encourage ordiscourage nursing home placement for individualswith dementia.

Characteristics of Nursing Home ResidentsWith Dementia

Available information about the characteristics ofnursing home residents with dementia is presentedin chapter 2. As noted there, nursing home residentswith dementia are older on average than othernursing home residents. The 1985 National NursingHome Survey found that half of the residents withdementia were over age 85, compared with one-thirdof the other residents (469). The survey also foundthat three-quarters of the residents with dementiawere female. Although a preponderance of femaleresidents with dementia is to be expected sincefemale nursing home residents greatly outnumbermale residents, the survey data indicate that femalenursing home residents were somewhat more likelythan male residents to have dementia (48 percent vs.40 percent, respectively) (469).

Nursing home residents with dementia are morelikely than other nursing home residents to needassistance with activities of daily living (i.e., bath-ing, dressing, using the toilet, transferring from bedto chair, remaining continent, and eating). The 1985National Nursing Home Survey found, for example,that 69 percent of residents with dementia neededassistance to remain continent, compared with 37percent of the other residents (469) (see fig. l-l).

Chapter 1--Overview and Policy Implications . 11

Figure I-1—impairments in Activities of Daily Livingin Demented and Nondemented Nursing Home

Residents, United States, 1985

100 9 6 %

80

60

40

20

0

87%’.

74%70% 69%

5 4 %

Bathing Dressing Using Transferring Continence Eatingthe toilet bed to chair

- Demented residents m Nondemented residents

SOURCE: Adapted from U.S. Department of Health and Human Services,“Mental Illness in Nursing Homes: United States, 1985,” PublicHealth Service, National Center for Health Statistics, DHHSPub. No. (PHS) 89-1758, Hyattsville, MD, February 1991.

Psychiatric symptoms are more common amongnursing home residents with dementia than amongother nursing home residents. The 1987 NationalMedical Expenditure Survey found, for example,that 36 percent of residents with dementia hadpsychiatric symptoms, such as delusions and hallu-cinations, compared with 26 percent of other resi-dents (464) (see ch. 2).

Behavioral symptoms are also more commonamong nursing home residents with dementia thanamong other nursing home residents. The 1987National Medical Expenditure Survey found that 59percent of residents with dementia had one or moreof ten behavioral symptoms (wandering, physicallyhurting others, physically hurting oneself, dressinginappropriately, crying for long periods, hoarding,getting upset, not avoiding dangerous things, steal-ing, and inappropriate sexual behavior) (464). Incontrast, 40 percent of other nursing home residentshad one or more of these symptoms (see fig. 1-2).

Although these data show that nursing homeresidents with dementia are more likely than othernursing home residents to have impairments inactivities of daily living and psychiatric and behav-ioral symptoms, not all nursing home residents withdementia have these problems. The survey data

Figure 1-2—Behavioral Symptoms in Demented andNondemented Nursing Home Residents, United

States, 1987

59%60

40- - 37%

20- -

6%2%

0 {

1 or more 1 to 4 5 to 10behavioral behavioral behavioralsymptoms symptoms symptoms

- Demented residents ~] Nondemented residents

SOURCE: Adapted from U.S. Department of Health and Human Services,published and unpublished datafromthe 1987 National MedicalExpenditure Survey, Institutional Population Component, Cur-rent Residents, Agency for Health Care Policy and Research,Rockville, MD, 1991.

indicate that 4 to 46 percent of residents withdementia do not have impairments in activities ofdaily living, depending on the activity, and that morethan 40 percent of residents with dementia do nothave behavioral symptoms.

Nursing home residents with dementia also differin their coexisting medical conditions and physicalimpairments. OTA is not aware of any informationfrom national studies on the proportion of nursinghome residents with dementia who have coexistingmedical conditions or physical impairments. Asdiscussed in chapter 2, data on the characteristics of3427 residents of New York nursing homes showthat residents with dementia vary greatly in thisrespect (283). Some are relatively healthy except fortheir dementia, and others have numerous diseasesand physical impairments in addition to their demen-tia.

The diversity of nursing home residents withdementia has important implications for special careunits. First, it is unlikely any particular type of unitwill be appropriate for all types of nursing homeresidents with dementia. Second, with respect to thelong-range possibilities discussed earlier, it is clear


that if special care units were designated to serveonly individuals with behavioral symptoms, theunits would not serve all individuals with dementiawho need nursing home care, because more than 40percent of nursing home residents with dementia donot have behavioral symptoms.

Problems in the Care Provided for NursingHome Residents With Dementia

Many complaints and concerns have been ex-pressed about the quality and appropriateness of thecare provided for nursing home residents withdementia. These complaints and concerns are theprimary reason for the development and prolifera-tion of special care units. They explain to a greatdegree why there is a market for special care units.They are also the rationale for many of the specificchanges in physical design features, patient carepractices, and staff training that are recommendedfor special care units.

Table 1-1 lists the most frequently cited com-plaints and concerns about the care provided fornursing home residents with dementia. This list isbased on OTA’s review of numerous articles andbooks on nursing home care for individuals withdementia (see ch. 2). The inclusion of items in thelist does not imply that there is evidence to prove theitems are true but rather that the items are aspects ofwhat is believed to be wrong with the care providedfor individuals with dementia in many nursinghomes.

Some of the complaints and concerns listed intable 1-1 apply particularly to residents with demen-tia, and others apply equally to nondemented resi-dents. To differentiate these two types of problems,OTA compared the most frequently cited complaintsand concerns about the care of nursing homeresidents with dementia, as listed in table 1-1, withthe problems identified by the Institute of Medicinein its 1986 report, Improving the Quality of Care inNursing Homes, which dealt with nursing home carefor all types of residents (318). This comparison,which is discussed in greater detail in chapter 2,shows that the complaints and concerns aboutnursing home care for residents with dementia focusmore on the physical aspects of nursing homes thatare perceived to be inappropriate for individualswith dementia (e.g., the lack of cues to help residents

find their way and the lack of appropriate space forresidents to wander) and the lack of staff knowledgeabout how to respond to behavioral symptoms. Incontrast, the Institute of Medicine report focusesmore on the lack of sufficient attention to residents’rights and the lack of choices for residents.

Both the Institute of Medicine’s report and theliterature on nursing home care for individuals withdementia cite the failure of many nursing homes tocreate a home-like environment and their failure toidentify and treat residents’ acute and chronicdiseases and conditions. Both sources also cite thelack of adequately trained staff in many nursinghomes. The Institute of Medicine’s report focuses onthe lack of training in general, whereas the literatureon nursing home care for individuals with dementiafocuses on the lack of training about dementia andthe care of residents with dementia.

Both the Institute of Medicine’s report and theliterature on nursing home care for individuals withdementia cite the overuse and inappropriate use ofpsychotropic medications and physical restraints.Although these two problems affect all nursinghome residents to some degree, they are more likelyto affect residents with dementia.

From 35 to 65 percent of all nursing homeresidents are prescribed and/or receive at least onepsychotropic medication? and 9 to 26 percent ofresidents are prescribed and/or receive more thanone such medication (18,19,52,366,425,429,433,461). Nursing home residents with dementia aremore likely than other nursing home residents toreceive these medications (19,389,425,429). Oftenthe medications are used to control behavioralsymptoms in residents with dementia, even thoughmany of the frequently used medications have notbeen demonstrated to be effective for this purpose(l8,l9,l80,208,277,285,339,381,389,397,406,414,425).Moreover, some of the most frequently used medica-tions are known to cause confusion, disorientation,and oversedation in older people and are likely toworsen the fictional impairments of individualswith dementia.

From 25 to 59 percent of all nursing homeresidents are physically restrained at any one time(133,446,520). Nursing home residents with demen-tia are far more likely than other nursing homeresidents to be physically restrained (133,389,446).

S Psycho@opic m~ications include antipsychotic, antidepressan~ antianxiety, and se&tive/hypnOtk agents.


Table 1-1—Frequently Cited Complaints and Concerns About the Care Provided forNursing Home Residents With Dementia

● Dementia in nursing home residents often is not carefully or accurately diagnosed and sometimes is notdiagnosed at all.

• Acute and chronic illnesses, depression, and sensory impairments that can exacerbate cognitive impairmentin an individual with dementia frequently are not diagnosed or treated.

•There is a pervasive sense of nihilism about nursing home residents with dementia; that is, a general feelingamong nursing home administrators and staff that nothing can be done for these residents.

• Nursing home staff members frequently are not knowledgeable about dementia or effective methods ofcaring for residents with dementia. They generally are not aware of effective methods of responding tobehavioral symptoms in residents with dementia.

• Psychotropic medications are used inappropriately for residents with dementia, particularly to controlbehavioral symptoms.

• Physical restraints are used inappropriately for residents with dementia, particularly to control behavioralsymptoms.

• The basic needs of residents with dementia, e.g., hunger, thirst, and pain relief, sometimes are not metbecause the individuals cannot identify or communicate their needs, and nursing home staff members maynot anticipate the needs.

• The level of stimulation and noise in many nursing homes is confusing for residents with dementia● Nursing homes generally do not provide activities that are appropriate for residents with dementia

• Nursing homes generally do not provide enough exercise and physical movement to meet the needs ofresidents with dementia.

● Nursing homes do not provide enouqh continuity in staff and daily routines to meet the needs of residentswith dementia.

• Nursing home staff members do not have enough time or flexibility to respond to the individual needs ofresidents with dementia.

. Nursing home staff members encourage dependency in residents with dementia by performing personal carefunctions, such as bathing and dressing, for them instead of allowing and assisting the residents to performthese functions themselves.

. The physical environment of most nursing homes is too “institutional” and not “home-like” enough forresidents with dementia.

• Most nursing homes do not provide cues to help residents find their way.

• Most nursing homes do not provide appropriate space for residents to wander.•o Most nursing homes do not make use of design features that could support residents’ independent

functioning.• The needs of families of residents with dementia are not met in many nursing homes.

SOUR=: ~lce of ‘I&bnolOgy Assessment 1992.

A study of restraint use in 12 Connecticut nursing of bone and muscle mass and other physiologicalhomes found, for example, that 51 percent of the effects of immobility; increased agitation; aggra-disoriented residents were newly restrained over the vated behavioral symptoms, such as screaming,l-year course of the study, compared with only 17 hitting, and biting; decreased social behavior; loss ofpercent of the residents who were not disoriented self-esteem; emotional withdrawal; and injuries and(446). The potential negative effects of physical death due to improper use of the restraints andrestraint use for both demented and nondemented residents’ attempts to escape from them (30,133,residents include the following: incontinence; loss 139,182,208,300,305,383,427,446,490,498).

14 ● Special Care Units for People with Alzheimer’s and Other Dementias

Box I-B—The Development of Excess Disability in a Nursing Home Resident With Dementia

One evening an elderly man with dementia who had recently been admitted to a nursing home was pickingup his newspaper at the receptionist’s desk Abruptly, he threatened to hit the receptionist with his cane if she didnot call him a cab, so he could “go to town.’ The receptionist contacted the nurses’ station and kept the man talkinguntil help arrived. Three staff members responded. They attempted to calm the man verbally, but when theseattempts failed, they snatched the cane and forcefully placed him in a “geri-chair.” He was wheeled to his room,yelling and kicking. Several visitors and other residents stood by, wide-eyed, watching this scene.

A negative pattern developed with the new resident. He did well during the day with minimal assistance, butevery evening he became very confused, agitated, and disruptive. The nursing home staff met with his family, andthe family agreed to visit him each evening for a few weeks, until he adjusted to the new environment.

Several weeks passed, the agitation and confusion continued, and the family requested sedation, in part becausethey were embarrassed about his behavior. An antipsychotic medication was prescribed. Different dosages andadministration times were tried to determine a therapeutic level. Several more weeks passed. The resident becameless disruptive, but he also began to walk unsteadily, drool, and slur his words. He became incontinent, and he couldno longer dress himself.

SOURCE: Adapted from M. Bowsher, “A Unique and Successful Approach to Care for Moderate Stage Alzbeimer’s Victims,” Green HillsCenter, West Liberty, OH, unpublished manuscript no date.

Overuse and inappropriate use of psychotropic functional impairments that are caused by his or hermedications and physical restraints are problems in dementing disease or condition and other functionalthemselves. They are also perceived by special careunit advocates and others as manifestations of otherproblems in the nursing home care provided forindividuals with dementia—notably the failure ofmany nursing homes to use more appropriatemethods of responding to the individuals’ physicaland emotional needs and behavioral symptoms.

Reduction in the use of psychotropic medicationsand physical restraints is a major objective of manyspecial care units. Evidence cited later in this chapterand discussed at greater length in chapter 3 indicatesthat in general special care units have been success-ful in reducing the use of physical restraints but thatuse of psychotropic medications is as high or higherin special care units than in nonspecialized units.

Negative Consequences for Nursing HomeResidents With Dementia, Their Families,

Nursing Home Staff Members, andNondemented Nursing Home Residents

Problems in the care provided for nursing homeresidents with dementia have many negative conse-quences for the residents. These negative conse-quences include reduced quality of life, reducedphysical safety, and excess disability. The termexcess disability refers to functional impairment thatis greater than is warranted by an individual’sdisease or condition (47,219). The concept of excessdisability implies that an individual has certain

impairments that are caused by other factors. Thelatter impairments constitute excess disability.

Inappropriate or poor-quality nursing home carecan lead to excess disability in cognitive function-ing, mood, activities of daily living, and behavior.Box 1-B illustrates the development of excessdisability in a nursing home resident with dementia.The immediate cause of excess disability in this casewas a psychotropic medication. Box 1-C later in thischapter describes an alternate set of staff responsesin the same situation that solved the problem andavoided the use of psychotropic medications and theexcess disability.

In practice, it is often difficult to distinguishfictional impairments caused by an individual’sdementing disease or condition and functionalimpairments caused by inappropriate or poor-qualitynursing home care. Many commentators contend,however, that some and perhaps many of thefunctional impairments of nursing home residentswith dementia are due to problems in the care theyreceive rather than to their dementing disease orcondition (107,1 15,125,165,171 241,263,359,385,386).

Problems in the nursing home care provided forindividuals with dementia have negative conse-quences for the residents’ families. Many families ofindividuals with dementia feel intensely guilty,anxious, and sad about having to place the individualin a nursing home. These feelings may be due

Chapter I-Overview and Policy Implications ● 15

primarily to the patient’s condition and other factorsthat have made nursing home placement necessary,but the feelings are intensified if the family believesthe individual is receiving inappropriate or poor-quality care (84,162,263). In addition, the failure ofmany nursing homes to facilitate and supportfamilies’ ongoing involvement in their relative’scare may result in the development of a competitiveor adversarial relationship between the staff and thefamily which further increases the family members’anxiety (45,50,55,167,349,418).

Problems in the care provided for individuals withdementia also have negative consequences for nurs-ing home staff members. Residents with dementiaare often difficult for staff members to care forbecause of their communication deficits, impair-ments in activities of daily living, and behavioralsymptoms (60,107,167,170,181,191,263,352,359,385).The difficulty of caring for residents with dementiais said to cause stress, lowered morale, and burnoutfor staff members (191,263,346,352,398). Thesereactions may in turn lead to increased absenteeismand staff turnover. To the extent that residents’impairments are caused or exacerbated by inappro-priate or poor-quality care, the job of staff membersis unnecessarily difficult, and any resulting stress,absenteeism, and turnover are also attributable to theinappropriate care.

Lastly, nondemented nursing home residents mayexperience negative consequences because of prob-lems in the care provided for residents with demen-tia. Behavioral symptoms of residents with demen-tia, e.g., restlessness, screaming, repetitive verbali-zations, and combativeness, are upsetting for nonde-mented residents (46,220,241,263,268,352,373). Thecognitive and fictional impairments of residentswith dementia may also be upsetting for nonde-mented residents. Experts disagree about the overallimpact on nondemented nursing home residents ofliving in close proximity to residents with dementia,but the two studies OTA is aware of that address thisissue found significant negative effects for thenondemented residents (438,507). In a study of 72nondemented nursing home residents, Teresi et al.found that the nondemented residents who shared aroom or had a room adjacent to a demented residentwere significantly more likely than the other nonde-mented residents to express dissatisfaction with theirlife and their environment and to be perceived asdepressed by staff members (438). They were also

significantly less likely to receive visits or phonecalls from family or friends.

It is unclear whether the negative effects onnondemented nursing home residents of living inclose proximity to residents with dementia are dueprimarily to characteristics of the demented resi-dents that are caused by their dementing illness or tocharacteristics that are caused by inappropriatenursing home care. To the extent that the negativeeffects are due to characteristics caused by inappro-priate care, the inappropriate care is also responsiblefor the reduced quality of life of the nondementedresidents.

Special care units promise to provide betternursing home care than is currently available forindividuals with dementia. By providing better care,they expect to benefit residents, residents’ families,and nursing home staff members. Better care canonly reduce impairments that are not inevitablycaused by the residents’ dementing disease orcondition. Likewise, better care for residents canonly alleviate that portion of family members’feelings of guilt, anxiety, and sadness that is due toinappropriate care, not the portion of those feelingsthat is caused by the residents’ impairments ordeteriorating condition. Similar considerations applyto the potential impact of better care on nursinghome staff members. Research findings with respectto the effect of special care units on residents,families, and nursing home staff members should beconsidered in the context of these inherent limita-tions on potential positive outcomes.

The situation is different for nondemented nurs-ing home residents. Placing demented residents inseparate units eliminates for nondemented residentsthe negative effects of living in close proximity withdemented residents regardless of the factors thatcause the negative effects. Some commentatorsbelieve that placing individuals with dementia inphysically separate units may be justifiable solely onthe grounds that it benefits nondemented residents,assuming the placements do not harm the dementedresidents (221,356).

SPECIAL CARE UNITSThe first special care units in this country were

established in the mid 1960s and early 1970s(413,485,494). In the mid to late 1970s and the firsthalf of the 1980s, interest in specialized nursinghome care for individuals with dementia grew


rapidly because of increasing general awareness ofAlzheimer’s disease and the special needs of nursinghome residents with dementia (273). In this period,some nursing homes established special care units.6

Other nursing homes established special activityprograms for their residents with dementia.7

Reports on these early special care units andprograms reflect each facility’s search for workableapproaches in caring for individuals with dementia(273). The reports are primarily descriptive. Many ofthem include case examples that illustrate thebehavioral and other resident problems the unit wasdesigned to address.

Much of the literature on special care unitsconsists of descriptive reports of this kind. Thesereports generally cite one or more theoretical con-cepts as the rationale for the physical design featuresand patient care practices that have been imple-mented in a particular unit and make that unit specialin the view of the report authors. Many of the reportsalso provide nonquantitative, anecdotal evidence ofthe beneficial outcomes of the unit.

Reports on early special care units do not suggestmarketing interests, but some recent reports doreflect such interests. In the past few years, marketdemand has clearly become an important factor inthe establishment of special care units (273).

This section discusses the theoretical concepts ofspecialized dementia care that are frequently cited inthe special care unit literature. It briefly describesseveral ideas about special care units from othercountries that have influenced the development ofspecial care units in this country. Lastly, it summa-rizes the findings from the available descriptive andevaluative studies of special care units.

Six Theoretical Concepts of SpecializedDementia Care and Their Implications forStaff Composition and Training and the

Individualization of Care

Six interrelated concepts pervade the literature onspecial care units. The six concepts are discussed atsome length in this report because OTA’s review ofthe literature on special care units and discussions

with experts on dementia care indicate that theseconcepts constitute the core of what is or should bespecial about special care units, more so than anyparticular physical design features or other charac-teristics of the units. Although experts disagreeabout particular physical design features and otherspecial care unit characteristics, there appears to beconsiderable agreement about the concepts.

The six theoretical concepts apply to the care ofindividuals with dementia generally and are notlimited to special care units or even to nursing homecare. One or more of the concepts are cited invirtually all articles and books about special careunits, although few sources cite them all. Theconcepts are often used to explain and justify theparticular physical design features and patient carepractices used in a given special care unit orrecommended for special care units generally. Theconcepts also have important implications for staffcomposition and training and the individualizationof care.

1. Something can be done for individuals withdementia.

This concept argues against the pervasive nihil-ism that has characterized the care of individualswith dementia. It posits instead that even thoughmost of the diseases and conditions that causedementia are incurable at present, some aspects ofdementia are treatable, and treatment will improvethe individual’s functioning and quality of life(91,125,165,268,353,364,371,403). The other fiveconcepts discussed in this section can be thought ofas ways of operationalizing the first concept. Acorollary to the first concept that is implicit in muchof the special care unit literature but explicitly statedby only a few commentators is the value judgmentthat individuals with dementia have a right to carethat improves their functioning and quality of lifeeven if the disease or condition that causes theirdementia is irreversible and progressive (33,66,170,399).

2. Many factors cause excess disability inindividuals with dementia. Identifying andchanging these factors will reduce excess

6For ~xmple, of ~peci~ ~me ~~ ~~~bli~hed ~ ~~ ~eri~d, see Berger (27), Bl~en~ Jewish Home (32), Bohg md Bohg (34), Bowsher(38), Bnce (44), Clarke (87), Goodman (158), Grossman et al. (163), Kromm and Kromm (234), Liebowitz et al. (253), Peppard (345), Wallace (478),and Wilson and Patterson (505).

T See, for ~wple, H~c~k ~d Ba~ (173), Johnson and Chapman (21 1), McGrowder-Lin and Bhatt (299), Sawer ~d Mendolovi~ (400)sand Schwab et al. (403).


disability and improve the individuals’functioning and quality of life.

As discussed earlier, excess disability is fuc-tional impairment that is greater than is warranted byan individual’s disease or condition (47,219). Ex-cess disability in individuals with dementia can becaused by untreated acute or chronic illnesses,depression, and sensory impairments; overuse orinappropriate use of psychotropic or other medica-tions or physical restraints; excessive environmentalnoise; lack of stimulation and exercise; inappropri-ate caregiver responses to individuals’ behavioralsymptoms, and other factors. The literature onspecial care units contains numerous examples ofsituations in which changing a factor that wascausing excess disability resulted in dramatic im-provement in an individual’s functioning and qualityof life.

3. Individuals with dementia have residualstrengths. Building on these strengths willimprove their functioning and quality of life.

Although individuals with dementia are usuallydescribed in terms of their impairments, even thosewith severe impairments have residual strengths andabilities (125,328,353,399,519). It has been noted,for example, that some individuals with dementiawho are no longer able to speak coherently can stillsing, and some can remember the words to old songs(295,487,491). By building on this strength, musicprograms and music therapy are intended to improvethese individuals’ quality of life and allow them tointeract on some level with other people.

Another example of the implementation of thisconcept is the use of familiar activities. Manyindividuals with dementia remember how to do tasksthey did earlier in their lives. Activities such ascooking and laundry-folding for women and wood-working for men are intended to build on theseremaining abilities and give the individuals a feelingof competence (108,518).

4. The behavior of individuals with dementiarepresents understandable feelings and needs,even if the individuals are unable to expressthe feelings or needs. Identifying andresponding to those feelings and needs willreduce the incidence of behavioral symptoms.

The behavior of individuals with dementia isfrequently regarded as an inevitable and essentiallymeaningless consequence of their dementing dis-

ease or condition, and little effort is made tounderstand or explain it. In contrast, experts indementia care point out that the behavior of individ-uals with dementia often expresses meaningfulfeelings, intentions, and needs (60,125,273,287,353,361,385,403,408,482,517). They contend that ifnursing home staff members and other caregiverscan figure out the meaning of the individuals’behavior and respond to that meaning, the caregiversmay be able to prevent or resolve behavioralsymptoms without resorting to psychotropic medi-cations or physical restraints. Box 1-C describes thesame elderly man with dementia who is described inbox 1-B and illustrates the way in which interven-tions based on an understanding of the meaning of anindividual’s behavior may prevent the developmentof behavioral symptoms and avoid the use ofpsychotropic medications and physical restraints.The special care unit literature contains manysimilar accounts.

The first efforts to explain specific behavioralsymptoms in individuals with dementia focused onwandering. Beginning in the 1970s, several re-searchers have studied wandering behavior andconcluded that although the behavior often seemsmeaningless on the surface, it actually represents avariety of meaningful intentions and needs fordifferent individuals (e.g., a search for someone orsomething, a search for security, a wish to go home,or a lifelong coping style) (106,306,361,417). Basedon this conclusion, a number of innovative andreportedly effective methods of responding to wan-dering behavior have been developed.

Two books-Care of Alzheimer’s Patients: AManual for Nursing Home Staff (165) and Under-standing Difficult Behaviors (385)-discuss themany possible reasons for behavioral symptoms andsuggest ways of responding to the problems basedon these reasons. Both books recommend andexemplify a flexible, problem-solving approach tobehavioral symptoms. Other commentators havealso noted that responding effectively to the behav-ioral symptoms of individuals with dementia ofteninvolves a flexible, trial and error approach (353,399,516).

Rader refers to wandering and other behaviors ofindividuals with dementia as agenda behavior; thatis, behavior by which a person with dementiaattempts to meet his or her own agenda (359,361).She urges caregivers of individuals with dementia to


Box 1-C—The Use of Behavioral Interventions With a Nursing Home Resident With Dementia

One evening an elderly man with dementia who had recently been admitted to a nursing home was pickingup his newspaper at the receptionist’s desk. Abruptly, he threatened to hit the receptionist with his cane if she didnot call him a cab, so he could “go to town, ’ The receptionist stood up, looked directly at the resident and said ina respectful, matter-of-fact tone, “I see something is bothering you.’ The resident answered in a low, harsh voice,“I should be working, not being lazy.” The receptionist asked him about his work and listened intently as he talkedabout the work he used to do.

A pattern developed with the new resident. He did well during the day with minimal assistance, but everyevening he became very confused and agitated. A nurse aide was assigned to take a walk with him at these times.As they walked together around the facility, they often talked about the past and the resident’s busy professionallife. Sometimes they just walked. When the resident showed sorrow, the nurse aide shared the sorrow with him byactive listening and gently touching him on the arm.

Several weeks passed, The resident became less agitated and more content to wander around the unit,sometimes stopping to take imaginary measurements of a doorway or a piece of furniture. The intervention of thefamiliar nurse aide prevented the development of a behavioral problem that might have led to the use of psychotropicmedications or physical restraints.

SOURCE: Adapted from M. Bowsher, “A Unique and Successful Approach to Care for Moderate Stage Alzheimer’s Victims,” Green HillsCenter, West Liberty, OH, unpublished manuscrip~ no date.

try to understand the agenda that underlies theindividual’s behavior and to allow the individual toplay out that agenda as much as possible, rather thansuperimposing the caregiver’s own agenda.

On the basis of the concept that the behavior ofindividuals with dementia represents understand-able feelings and needs, Feil and others advocate theuse of validation therapy (120,136,407). Validationtherapy involves understanding and validating thepersonal meaning of an individual’s behavior. It isan alternative to reality orientation, a therapymethod which requires the caregiver to consistentlyreorient the confused person to current reality. Manycommentators contend that reality orientation isfrustrating and usually ineffective for individualswith dementia, except perhaps early in the course oftheir dementing disease or condition (120,170,273,359,361, 436,483).

5. Many aspects of the physical and socialenvironment affect the functioning ofindividuals with dementia. Providingappropriate environments will improve theirfunctioning and quality of life.

The relationship between the environment and thefunctioning of older people has been the topic ofempirical research and theory-building in environ-mental psychology for 30 years (183,242). It is nowgenerally accepted that the interaction between anolder person’s environment and the person’s charac-

teristics can affect his or her functioning, eitherpositively or negatively. According to Lawton:

The quality of the outcome of a person-environment transaction is a function of the degreeof environmental demand or press. . and the compe-tence of the person. When the degree of demand ismatched to the person’s competence, a positiveoutcome in terms of affective response or adaptivebehavior is the rule. When press is high in relation tocompetence, psychological disturbance in the formof strain is likely to occur. When press is low inrelation to competence, sensory deprivation andatrophy of skills are likely (243).

In this theory, the terms environmental demandand environmental press refer to the motivating oractivating quality for a particular individual of thephysical and other aspects of that individual’senvironment (242). The term person-environment fitdenotes the degree of congruence between environ-mental demand or environmental press and the needsand characteristics of an individual. The theoryproposes that person-environment fit can be im-proved by changing the environment (218,242).

The theory also proposes that the impact of theenvironment is greater for individuals with lowcompetence, including individuals with dementia,than for other people. According to Lawton:

As individual competence decreases, the environ-ment assumes increasing importance in determiningwell-being. One corollary of this hypothesis is that


the low-competent are increasingly sensitive tonoxious environments. The opposite and morepositive corollary is that a small environmentalimprovement may produce a disproportionate amountof improvement in affect or behavior in the low-competent individual (241).

The concept that appropriate environments willimprove the functioning and quality of life ofindividuals with dementia appears frequently in thespecial care unit literature. In the context of thetheory, the term environment includes all aspects ofa person’s surroundings, but the concept is citedmost often in connection with physical aspects of theunits. Many articles and books that discuss thedesign of special care units identify one or moreimpairments or needs of individuals with dementiaand propose physical design features to compensatefor or respond to the impairments or needs. Twobooks exemplify this approach: Designing for De-mentia: Planning Environments for the Elderly andConfused (67) and Holding Onto Home: DesigningEnvironments for People With Dementia (93).

Physical design features are seen as potentiallycompensating for or responding to the impairmentsand needs of individuals with dementia in thefollowing general ways:

. by assuring safety and security;

. by supporting functional abilities;

. by assisting with way-finding and orientation;

. by prompting memory;

. by establishing links with the familiar, healthypast;

. by conveying expectations and eliciting andreinforcing appropriate behavior;

. by reducing agitation;● by facilitating privacy;. by facilitating social interactions;. by stimulating interest and curiosity;. by supporting independence, autonomy, and

control; and. by facilitating the involvement of families

(62,67,93,184).

Many different physical design features are justi-fied on the basis of the concept that appropriateenvironments will improve the functioning andquality of life of individuals with dementia. Thesedesign features range from the overall shape andfloor plan of the unit (see fig. 1-3) to the use ofenvironmental cues, such as color coding of roomsand corridors to help residents find their way, and

personal markers, such as residents’ pictures placednear their rooms to help them identify the rooms.

Physical design features are often referred in thespecial care unit literature as prosthetic because theyare intended to compensate for, rather than cure,impairments that are believed to be unchangeable.Since the impairments are unchangeable, it isassumed the prosthetic features will be neededpermanently. Physical design features that compen-sate for functional impairments are said to be costeffective because the design features act continu-ously and may substitute for more costly staffinterventions (185,243).

Sometimes very strong claims are made aboutparticular physical design features for special careunits, as if there were proof of the effectiveness orlack of effectiveness of the features. Numerousarticles state with certainty, for example, that floorpatterns with dark areas or dark borders should notbe used in special care units because individualswith dementia will perceive the dark areas as holesand be afraid to walk on or over them. Likewise it isoften said that certain types of art work, wallpaper,and carpet patterns cause delusions and hallucina-tions in nursing home residents with dementia. ToOTA’s knowledge, there is no research-based evi-dence for these claims.

OTA has heard particular physical design featuresjustified on the basis of claims, such as thatindividuals with dementia may mistake a lightreflected from a shiny floor as a blob that is chasingthem, that they feel threatened by the person in themirror who does not respond to their greeting, thatthey sometimes mistake their shadows for pools ofwater and try to jump over, that they try to pick theflowers in floral-print wallpaper, etc. One suspectsthat these claims arise from anecdotes about individ-ual residents or someone’s guess about the responseof individuals with dementia to a particular designfeature and that the anecdotes and guesses are thengeneralized to all residents with dementia.

In reality, very little research has been done to testthe impact of particular physical design features onindividuals with dementia. Moreover, the conclu-sions of several of the existing studies are contradic-tory. Some of these studies are described in chapter4. Unfortunately, some nursing homes incorporatephysical design features for which strong claims aremade and believe they have thereby created anappropriate environment for their residents with

John Douglas French Center, Los Angeles, CA

The building is structured in a “butterfly” shape with 4 units maintainingrooms for “families” of 12-13 residents located around a shared nurses’station. Each family unit includes a mix of private and semi-private rooms.There is direct access to a secure courtyard.

IJ 1

-

d

Weiss Institute, Philadelphia Geriatric Center, Philadelphia, PA

The unit is comprised of a large central space, around which residents’rooms are located. The open plan of the 40-bed unit allows staff easy visualaccess to all residents and provides a continuous path for wanderers. Theunit has a therapeutic kitchen for residents.

Figure 1-3—Alternate Shapes and Floor Plans for Special Care Units

Corinne DoIan Alzheimer’s Center, Heather Hill, Chardon,OH

The building is comprised of 2 triangular units with a shared supportand bathing core. The open plan of each 12-bed unit allows staff easy visualaccess to all residents, and provides a continuous path for wanderers. Eachunit has a fully equipped residential-style kitchen. There is direct access to asecure courtyard, as well as to several paved paths beyond the yard forresidents and visitors.

n

Friendship House, West Bend, IN

The building is comprised of 2 units with 4 “households” each. A nurses’station, elevator and services are located at the center of each unit of4 households. A protected outdoor courtyard is defined by the two units.

SOURCE: M.P. Calkins, Design for Dementia: Planning Environments for the Ekfetfyand Confused, 1988; U. Cohen and G.D. Weisman, Holding On To Home, 1991; U. Cohen and G.D. Weisman,Environments for People Wth Dementia: Case Studies, 1988.


dementia, when, in fact, no evidence exists that thespecifc features are effective. Lawton has notedthat:

There is a strong tendency for intuitive, a priorireasoning about what is “good” for Alzheimerpatients to become accepted as fact. . .The hunger forinformation is so great among practitioners thatalmost any unsupported assertion can be rapidlyaccepted (244).

As noted earlier, the concept that appropriateenvironments will improve the functioning andquality of life of individuals with dementia is citedmost often in connection with physical designfeatures for special care units, but it is sometimesalso cited in connection with other unit characteris-tics, such as activity programs and daily routine.Activity programs and the daily routine on the unitare perceived as potentially compensating for theimpairments of residents with dementia in manyways, e.g., by supporting functional abilities, prompt-ing memory, conveying expectations, eliciting andreinforcing appropriate behavior, facilitating socialinteractions, and stimulating interest and curiosity(358,392,519).

Coons has gone farthest in developing a model ofspecialized dementia care, referred to as a therapeu-tic milieu, in which all aspects of the physical andsocial environment and the daily routine on the unitare designed to be therapeutic (104,105,109).8 Thismodel was demonstrated for several years at WesleyHall, a special care unit in a retirement facility inChelsea, MI.

A different model of care, referred to as a lowstimulus unit, has been developed by Hall and hercolleagues (170,171). This model is based on theconcept that appropriate environments will improvethe functioning and quality of life of individuals withdementia and the perception of these clinicians thatindividuals with dementia have a “progressivelylowered threshold for stress” due to their reducedability to receive and process external stimuli. Halland others believe that in traditional nursing homeunits, residents with dementia are overwhelmed bymultiple environmental stimuli, including noisefrom telephones, televisions, radios, Muzak, andpaging systems; high-glare floors; hurrying staff;visitors; other residents; and large group activities.They believe that in response to these stimuli, the

residents become increasingly agitated, confused,and sometimes combative. To compensate for theresidents’ lowered threshold for stress, Hall and hercolleagues propose units in which environmentalstimuli are reduced: no telephones ring on the unit;television, radio, Muzak, and paging are eliminated;staff and visitor traffic through the unit is reduced;dining and activities take place in small groups; andresting is encouraged by environmental cues, such ascomfortable chairs in the hallways. Many lowstimulus units have been established on the basis ofthis model (169,209,334). While agreeing with someaspects of the low stimulus model, other cliniciansand researchers contend that the main problem is notexcessive stimuli, but insufficient stimuli of appro-priate types. They argue that an increase in selectedstimuli will improve the functioning and quality oflife of individuals with dementia (107,183,243,259,272). The ideal level and type of stimuli areunclear, however (96,185,244,287).

Like the other five concepts discussed in thissection, the concept that appropriate environmentswill improve the functioning and quality of life ofindividuals with dementia is theoretical. It is inter-preted differently by different individuals and isused to justify a great variety of physical designfeatures and other unit characteristics. Disagree-ments among experts about the right characteristicsfor a special care unit make it difficult for nursinghome administrators and others to design a specialcare unit. These disagreements do not, however,invalidate the underlying concept. Instead, theypoint out the need for research to test the effective-ness of the recommended characteristics.

6. Individuals with dementia and their familiesconstitute an integral unit. Addressing theneeds of the families and involving them in theindividuals’ care will benefit both theindividuals and the families.

Families of individuals with dementia are oftensaid to be the second victim of the dementia. Theyare generally perceived by experts in dementia careas part of the client unit. As a result, meeting theirneeds becomes a legitimate objective of specializeddementia care.

Families can also assist in various ways in the careof nursing home residents with dementia. They area source of valuable information about the residents,

g me Con=pt of therapeutic m-lieu was f~st used in the treatment of mentally ill persons in psychiatric hospitis (215).


who often cannot provide accurate informationabout themselves. As Hegeman and Tobin havenoted, families can ‘‘help to preserve the uniqueidentity of residents and help the staff and theresident be aware of that identity” (178). Familiescan also provide physical assistance, emotionalsupport, and advocacy. Their presence helps to makeany setting more home-like and familiar for theresident (174,296,358,418).

Meeting the needs of families of nursing homeresidents with dementia means providing them withinformation, emotional support, and a structure thatfacilitates their involvement in the residents’ care.Families are perceived to benefit from informationabout dementia and ways of communicating with aperson with dementia, as well as from supportgroups, counseling, and other forms of emotionalsupport (55,128,168,296,358,41 8,5 16).

To facilitate the involvement of families in theresidents’ care, it is necessary to provide both awelcoming atmosphere and administrative and care-giving practices that recognize the families’ legiti-mate role in the residents’ care. Families can beinvolved, for example, in care planning conferencesand other situations in which decisions are beingmade about the residents’ care. They may also beencouraged to act as volunteers on the unit (46,55,125,168,174,418).

By providing information, emotional support, anda structure that facilitates the involvement of fami-lies, it may be possible to lessen their feelings ofanxiety and guilt and avoid the development of acompetitive or adversarial relationship between thestaff and the families. Families differ, however, andthe best ways of providing information and supportand involving families also differ (128,168,358).

Implications for Staff Composition and Training

The six concepts discussed above have importantimplications for staff composition and training. Withrespect to staff composition, the concepts indicatethe need for a multidisciplinary approach to care. Toidentify and change the factors that cause excessdisability requires the involvement of health careprofessionals capable of diagnosing and treating thecauses of excess disability, e.g., acute and chronicillnesses, depression, and sensory impairments.Likewise, to provide activity programs that build onresidents’ residual strengths, support functionalabilities, and facilitate social interactions requires

the involvement of individuals who are skilled invarious therapeutic recreation specialties. Althoughthese health care professionals and other therapistsdo not necessarily have to be part of the unitstaff-and to make them part of the staff may beprohibitively expensive-some means of involvingthem in the residents’ ongoing care is essential foreffective implementation of the concepts.

With respect to staff training, the concepts requirea change for all staff members in widely heldnihilistic attitudes about nursing home residentswith dementia. In addition, since the concepts do notprovide precise formulas for care, staff membersmust not only understand the concepts but also beable to interpret and apply them in caregivingsituations. In most special care units, as in nursinghomes generally, nurse aides provide most of thedaily care. These aides must be able to interpret andapply the concepts—sometimes in difficult, emo-tionally-charged situations. To do so requires knowl-edge, problem-solving skills, and judgment. Specialcare units that adopt the concept of therapeuticmilieu often regard housekeepers and other nonprofes-sional staff members as part of the care team. Theseindividuals also must understand the concepts andbe able to apply them.

Implications for the Individualization of Care

Three of the six concepts clearly emphasize theindividualization of care. They require the staffmembers to: 1) identify and change the factors thatcause excess disability in individual residents; 2)identify and build on the residual strengths ofindividual residents; and 3) identify and respond tothe feelings arid needs expressed in the behavior ofindividual residents. As noted earlier, nursing homeresidents with dementia are diverse, and theircharacteristics and needs change over time. Thethree concepts that emphasize the individualizationof care fit well, at least in theory, with this diversity.

The concept that appropriate environments willimprove the functioning and quality of life ofindividuals with dementia may also fit well in theorywith the diverse and changing needs of nursinghome residents with dementia. In practice, however,the concept is probably more difficult to apply, sincespecial care units must be designed and built forgroups of individuals. The objectives in special careunit design include flexibility and the capacity toadapt to resident change (10,67,287,296,358). Ne-vertheless, given the extreme diversity of nursing

Chapter I-Overview and Policy Implications ● 23

home residents with dementia, it would seem thatthe more closely the physical environment of aspecial care unit matches the needs of one individualor one type of individual with dementia, the lesslikely the unit would provide the best environmentfor other types of individuals with dementia. Thesame concern may apply to other features of specialcare units, such as activity programs.

This concern has led a few nursing homes toestablish several special care units that providedifferent levels and types of care intended to matchthe characteristics and needs of residents in differentstages of their illness (34,473). A second alternative,adopted by some nursing homes with only onespecial care unit, is to discharge residents from theunit-usually to a nonspecialized unit in the samefacility-when the level and type of care provided inthe special care unit no longer matches the residents’characteristics and needs. Both these alternativesrequire moving residents, which is likely to increasetheir confusion. Moving residents also may havenegative consequences for the residents’ familieswho are often emotionally attached to the unit staffmembers and for the unit staff members who areoften attached to the residents and their families(40,375,473).

A third alternative is to allow special care unitresidents to age in place, that is, to remain on the unituntil they die. Anecdotal evidence suggests thatsome special care units that adopt this policybecome, in effect, terminal care settings as most ofthe residents progress into the later stages of theirillness (40,419). This creates problems for newresidents who are admitted to a unit in which mostof the other residents are severely cognitively andphysically impaired. OTA is not aware of anyresearch that compares these three alternatives, andthe special care unit literature contains little discus-sion of this important issue.

Ideas About Special Care UnitsFrom Other Countries

Special care units for people with dementia existin many other countries. Information about theseunits reaches the United States primarily throughreports from foreign visitors who are knowledgeableabout the special care units in their own countriesand through reports of Americans who have visited

the units in other countries. There are a fewdescriptive studies on special care units in particularcountries,9 but most of the available information isanecdotal. OTA is not aware of any formal researchcomparing special care units in different countries.

Information about special care units in othercountries influences thinking about special careunits in the United States in several ways. First,special care units in other countries demonstratealternate models of care. For example, a primaryobjective of special care units in some countries is toprovide a comfortable, home-like environment fortheir residents. These units have few rules andmaintain a flexible daily schedule that is responsiveto the habits and preferences of individual residents.In visiting these units, American observers havebeen impressed with their relaxed atmosphere andthe apparent contentment of the residents (273).Reports on special care units of this kind in othercountries create an incentive for the establishment ofsimilar units in this country.

Physical restraints are used less frequently or notat all in special care units in some other countries(273,498). The knowledge that restraints are lessoften used in other countries has been one incentivefor reducing their use in the United States.

Special care units in some other countries aremore able to innovate than special care units in theUnited States (273). Awareness of this differencecalls attention to the factors that encourage orconstrain innovation in different countries. One suchfactor is nursing home regulations. As discussed inchapter 6, nursing home regulations in the UnitedStates sometimes interfere with the implementationof innovative physical design and other features inspecial care units. Nursing homes are less tightlyregulated in most other countries and are thereforemore able to innovate. Public programs in manyother countries also make a less rigid distinction thanpublic programs in the United States between healthcare and social services, and the same publicprograms are more likely to pay for both types ofservices in other countries. As a result, there arefewer artificial barriers to the development of specialcare units that provide a mix of medical and socialservices. Lastly, public funding is more likely to beavailable for nonmedical residential care in othercountries than in the United States. When the same

9 see, for ex~ple, No- Severe Dementia: The Provision of Longstay care (330).


public programs pay for both medical and socialservices and public funding is available for nonmed-ical residential care, there is a strong financialincentive for government agencies to support thedevelopment of nonmedical residential care modelsthat are less costly than nursing homes. Since 1986,for example, the Australian government has pro-vided grants to stimulate the development of specialcare units in hostels as an alternative to nursinghomes for individuals with dementia (101).

Despite these advantages in other countries, nocountry has the answers with respect to special careunits or problems in the care of nursing homeresidents with dementia (273). Questions about theeffectiveness of various models and components ofcare are pervasive. Clinicians and researchers fromother countries frequently come to the United Statesin search of ideas about physical design features andpatient care practices for special care units. Ade-quately trained staff and sufficient funding are inshort supply everywhere.

Findings From Research onSpecial Care Units

Research on special care units is in an early stage,but some descriptive and evaluative studies havebeen conducted in the past few years. OTA’sconclusions from the available descriptive studiesare listed in table 1-2. The findings from thesestudies are discussed in detail in chapter 3, and someof the most important findings for policy purposesare reviewed in this section. The findings from theavailable evaluative studies are discussed in detail inchapter 4 and reviewed briefly in this section.

Number of Nursing Homes That Have a SpecialCare Unit

OTA estimates that in 1991, 10 percent of U.S.nursing homes had a special care unit. This numberincludes nursing homes that group some of theirresidents with dementia in physically distinct clus-ters in units that also serve some nondementedresidents.

As noted earlier, OTA’s estimate is based on thefindings of two recent studies. One of the studies-a1991 survey of all U.S. nursing homes with morethan 30 beds—found that 9 percent of the nursinghomes reported having either a special care unit ora special program for residents with dementia in aphysically distinct part of the facility (246). The

second study-a 1990 survey of all nursing homesin five northeastern States—found that seven per-cent of the nursing homes reported having a specialcare unit, and an additional five percent reported thatalthough they did not have a special care unit, theydid place some of their residents with dementia inphysically distinct groups or clusters in units thatalso served some nondemented residents (194).Thus, a total of 12 percent of the nursing homesreported using some method to physically groupresidents with dementia--either in a special careunit or a cluster unit.

The lack of an accepted definition of the termspecial care unit makes it difficult to developaccurate figures on the number and proportion ofnursing homes that have a special care unit. Thefigures cited above are based on self-report. Thefigures from the 1991 survey generally reflect theopinion of each nursing home administrator or othersurvey respondent about what a special care unit is.According to the researchers who conducted the1990 survey, however, some nursing homes thatplace residents with dementia in a physically sepa-rate unit and provide special services in the unit donot use the term ‘‘special care’ for these arrange-ments and therefore may not respond affirmativelyto a survey question about whether they have aspecial care unit (436). Surprisingly, the researchersalso found that in some nursing homes, the adminis-trator and the director of nursing disagreed aboutwhether the facility had a special care unit (194).

Some people believe the term special care unitshould mean more than just a physically separatespace and the nursing home’s claim that it provides‘‘special care. Depending on the additional criteriathat are used, some and perhaps many of the nursinghomes included in the figures just cited might not becounted as having a special care unit.

To OTA’s knowledge, the 1990 survey of allnursing homes in five northeastern States was thefirst to identify large numbers of nursing homes withcluster units. It is unclear whether cluster unitsshould be counted as special care units. Many of thecluster units identified in the 1990 survey incorpo-rated features that are recommended for special careunits (e.g., physical design features, special stafftraining, and family support groups), althoughcluster units were less likely than special care unitsto incorporate these features (194).


Table 1-2-Conclusions From Descriptive Studies of Special Care Units

Number of Nursing Homes That Have a Special Care Unit

• OTA estimates that in 1991, 10 percent of all nursing homes in the United States had a special careunit. In at least some States, this figure includes nursing homes that place some of their residents withdementia in “clusters” in units that also serve nondemented residents.

• The proportion of nursing homes that have a special care unit varies in different parts of the countryand in different States,

• Many nursing homes that do not have a special care unit are planning to establish one, and somenursing homes that have a special care unit are planning to expand the unit.

Characteristics of Nursing Homes That Have a Special Care Unit● Larger nursing homes are more likely than smaller nursing homes to have a special care unit.• As of late 1987, most nursing homes that had a special care unit were private, for-profit facilities. At

that time, multi-facility nursing home corporations owned about one-third of all the facilities that hada special care unit. There is no evidence, however, that ownership of special care units is dominatedby a small number of multi-facility nursing home corporations.

Characteristics of Special Care Units● Special care units are extremely diverse.• Most special care units have been established since 1983, although a few have been in operation for

20 to 25 years.• The goals of special care units differ. For some units, the primary goal is to maintain residents’ ability

to perform activities of daily living. Other units focus on maintaining residents’ quality of life,eliminating behavioral symptoms, or meeting residents’ physical needs,

. Most existing special care units were not originally constructed as special care units, and at leastone-fifth were neither originally constructed nor remodeled for this purpose.

• The use of specific physical design and other environmental features varies in existing special careunits. Many of the physical design and other environmental features cited as important in the specialcare unit literature are used in only a small proportion of special care units.

• The most extensively used environmental feature in special care units is an alarm or locking system,found in more than three-fourths of existing units.

• On average, special care units probably have fewer residents than nonspecialized nursing home units.

• On average, special care units probably have more staff per resident than nonspecialized nursing homeunits.

• Although the majority of existing special care units provide special training for the unit staff, at leastone-fourth of existing units do not.

• Less than half of existing special care units provide a support group for unit staff members.

● The types of activity programs provided by special care units vary greatly, but existing special careunits are probably no more likely than nonspecialized units to provide activity programs for theirresidents.

* About half of existing special care units provide a support group for residents’ families.

● Special care unit residents areas likely or more likely than other nursing home residents with dementiato receive psychotropic medications.

• Special care unit residents we probably less likely than other nursing home residents with dementiato receive medications of all types.



Table l-2-Conclusions From Descriptive Studies of Special Care Units-(Continued)

● Special care unit residents are less likely than other nursing home residents with dementia to bephysically restrained.

o Special care units vary greatly in their admission and discharge policies and practices. About half ofall special care units admit residents with the intention that the residents will remain on the unit untilthey die.

● The cost of special care units varies depending on the cost of new construction or remodeling, if any,and ongoing operating costs. On average, existing special care units probably cost more to operate thannonspecialized nursing home units, primarily because of the higher average staffing levels on specialcare units.

• Special care units generally have a higher proportion of private-pay residents than nonspecializednursing home units, and the private-pay residents are often charged more for their care in the specialcare unit than they would be in a nonspecialized unit.

Characteristics of Special Care Unit Residents

• Special care unit residents are younger than other nursing home residents, and they are more likelythan other nursing home residents to be male and white.

● Special care unit residents are more likely than other nursing home residents to have a specificdiagnosis for their dementing illness.

• Special care unit residents are probably somewhat more cognitively impaired and somewhat lessphysically and functionally impaired than other nursing home residents with dementia

● Special care unit residents are probably somewhat more likely than other nursing home residents withdementia to participate in activity programs.

* Special care unit residents are more likely than other nursing home residents with dementia to fall.

SOulmr!: CM%ce of ‘lk@nology Assessment, 1992.

In this context, it is interesting to note that the Because of this diversity, no single descriptivespecial care unit described in box 1-A at the statement is true of all special care units.beginning of this chapter is technically not a separateunit, because it does not have a nurses’ station andother features the State requires for a nursing homeunit. That unit is viewed by the facility’s administra-tors as a separate entity. A similar arrangement inanother nursing home might be viewed by itsadministrators as a clustering of residents withdementia in one section of a larger unit that alsoserves nondemented residents, and they might reportit as such on a survey questionnaire.

Characteristics of Special Care Units and SpecialCare Unit Residents

All studies of special care units show that existingunits are extremely diverse. They vary in their goals,physical design features, staff-to-resident ratios,staff training programs, provision of staff and familysupport groups, activity programs, use of psy-chotropic medications and physical restraints, andadmission and discharge policies and practices.

On average, special care units probably havefewer residents and more staff per resident thannonspecialized nursing home units (291). Staff-to-resident ratios vary greatly among units, however.

Most special care units provide special trainingfor their staff, but at least one-fourth of existing unitsdo not provide special training. In response to the1987 National Medical Expenditure Survey, 26percent of the nursing homes with a special care unitreported they did not provide special training for theunit staff (248). Likewise, in response to the 1990survey of all nursing homes in 5 northeastern States,30 percent of the facilities with a special care unitand 47 percent of the facilities with a cluster unitreported they did not provide special training for theunit staff (194). Given the emphasis on staff trainingin the special care unit literature, the finding thatmore than one-fourth of existing units do not providespecial training is surprising. The finding is proba-

Chapter l--Overview and Policy Implications ● 27

bly correct, however, since nursing homes areunlikely to underreport the provision of staff train-ing.

The most widely used physical design feature inspecial care units is an alarm or locking system,found in more than three-fourths of existing units(181,194,247). Although numerous physical designfeatures have been recommended for special careunits, most of the recommended features are used inonly a small proportion of existing units (194,485,494).

Some special care units have formal (written)admission and discharge policies, but most probablydo not (194). In response to the 1990 study of allnursing homes in five northeastern States, three-fourths of the facilities with a special care unitreported using each of three criteria to select theirresidents: 1) the degree of the individual’s dementia;2) the individual’s need for supervision; and 3) theindividual’s behavioral symptoms (194). Most of thefacilities reported that they seek individuals withmore rather than less severe behavioral symptoms,but 15 percent reported that they seek individualswith less severe behavioral symptoms for their unit.One-third reported that the individuals they admitmust be able to ambulate independently.

Reported admission practices may or may notreflect actual admission practices in special careunits. Findings from the Multi-State Nursing HomeCase-Mix and Quality Demonstration-a 5-yearcongressionally mandated study that includes spe-cial care unit residents among the 6800 nursinghome residents in the study sample-suggest thatthe major factor distinguishing special care unitresidents from individuals with dementia in nonspe-cialized nursing home units is the severity of theirphysical impairments (382). Data from a subsampleof 127 special care unit residents and 103 residentswith dementia in nonspecialized units in the samefacilities indicate that individuals with severe physi-cal impairments and physical care needs are lesslikely to be admitted to special care units than tononspecialized units. Once other variables werecontrolled, there was no significant difference inbehavioral symptoms between the special care unitresidents and the residents with dementia in thenonspecialized units.

About half of existing special care units admitresidents with the expectation that the individualswill remain in the unit until they die (194). Otherspecial care units admit residents with the expecta-

328-405 - 92 - 2 QL 3

tion that they will be discharged from the unit atsome time prior to their death. In the latter units, thereported reasons for discharge are: 1) that a residenthas become nonresponsive, physically abusive, orunable to ambulate independently; 2) that theresident needs intensive medical care; and 3) that theresident’s private funds are exhausted (194,485,492).

As noted in table 1-2, special care unit residentsare as likely or more likely than individuals withdementia in nonspecialized units to receive psy-chotropic medications (256,292,413). They are muchless likely to be physically restrained, however(256,292,391,413). A University of North Carolinastudy of 31 randomly selected special care units and32 matched, nonspecialized units in 5 States foundthat only 16 percent of the special care unit residentswere physically restrained at one point in time,compared with 36 percent of the residents withdementia in nonspecialized units (413).

Finally, five studies show that special care unitresidents are significantly more likely to fall thanother nursing home residents with dementia(99,265,292,497,521). In one study, the special careunit residents were not only more likely to fall butalso more likely to be hospitalized for a hip fracture(99). In another study, the increase in falls amongspecial care unit residents did not result in anincrease in injuries due to the falls (54). The greaterincidence of falls among special care unit residentshas received little attention thus far, in part becausethe relevant data from three of the studies have notyet been published. The reasons for the greaterincidence of falls are not known.

Costs, Charges, and Payment Methods

Very little information is available about the costof special care units. The cost of creating a specialcare unit obviously varies, depending on the extentof new construction or remodeling, if any. One studyof 12 nonrandomly selected special care units foundthat the reported costs for new construction andremodeling ranged from $4100 to $150,000 (275).Another unit was created for $1300, which coveredthe cost of an alarm system, color coding, and a fewother physical changes to the unit (70).

Most—but not all-special care units report thattheir operating costs are higher than the operatingcosts of nonspecialized units (70,477,485). Of 13nonrandomly selected special care units in Florida,for example, 7 reported that their operating costs


were higher than the operating costs of nonspecial-ized units in the same facility; 5 reported nodifference in operating costs, and one reported loweroperating costs (64).

The Multi-State Nursing Home Case-Mix andQuality Demonstration found that on average theamount of staff time spent caring for residents withdementia was greater in the special care units than inthe nonspecialized units in the study sample (143).The University of North Carolina study had similarfindings (413). The greater amount of staff timespent caring for special care unit residents undoubt-edly translates into higher average operating costs inthe special care units.

Many-but not all-nursing homes charge morefor care in their special care unit than in theirnonspecialized units (247,256,413,477,494). Mostspecial care units also have a higher proportion ofprivate-pay residents (292,413,477). It is the private-pay residents who are charged more for their care ina special care unit than they would be in anonspecialized unit. To OTA’s knowledge, nopublic program currently pays more for care in aspecial care unit than in a nonspecialized nursinghome unit.

According to preliminary data from the 1991survey of all U.S. nursing homes with more than 30beds, about half the nursing homes with special careunits charged their private-pay residents more in aspecial care unit than the residents would have beencharged in a nonspecialized unit in the same facility(246). The excess charge averaged $9.24 a day andranged from $1 to $83 a day.

Effectiveness of Special Care Units

OTA is aware of 15 studies that evaluate theeffectiveness of special care units for residents anda few additional studies that evaluate the effective-ness of special care units for residents’ families andunit staff members. These studies are discussed indetail in chapter 4.

Nine of the 15 studies did not use a control group(22,24,56,88,160,171,245,297,312). Each of thesestudies found some positive outcomes. The positiveoutcomes vary from one study to another, and someof the studies’ findings are contradictory. Excludingthese contradictory findings, the positive residentoutcomes found in more than one of the nine studiesare decreased nighttime wakefulness, improvedhygiene, and weight gain. A few of the studies found

improvements in the important areas of residents’ability to perform activities of daily living andresidents’ behavioral symptoms, but an equal num-ber of studies did not find such improvements.

All nine studies suffer from one or more methodo-logical problems that could affect the validity oftheir findings. One such problem is small samplesizes: 6 of the 9 studies had fewer than 12 subjects.Another methodological problem is inadequate re-search design and implementation. Some of thestudies are more like descriptive reports than rigor-ous research from which valid conclusions can bedrawn; in these studies, the outcomes are not clearlydefined, and the measurement process is moreimpressionistic than objective or standardized. Onlyfour of the nine studies report the statistical signifi-cance of their findings. Lack of control groups isanother methodological problem, since without acontrol group, the impact of the special care unitcannot be separated from the impact of other factorsthat may affect resident outcomes. Finally, many ofthe studies were conducted by unit staff members orother individuals who were involved in planning oradministering the unit. These individuals have anobvious interest in finding positive outcomes. Thepotentially powerful effect of their expectations,coupled with small sample sizes, lack of a rigorousresearch design, and lack of control groups mean thestudies’ results—both positive and negative-arequestionable.

Six of the 15 studies evaluating the effectivenessof special care units for their residents used a controlgroup. Four of the six studies with a control groupfound no statistically significant positive residentoutcomes that could be attributed to the special careunits (80,99,195,489). The resident outcomes meas-ured in one or more of these four studies werecognitive functioning, ability to perform activities ofdaily living, mood, behavioral symptoms, and rate ofhospitalization.

Two of the six studies with a control group foundpositive resident outcomes. One study found thatover a l-year period, 14 residents of one special careunit declined significantly less than 14 residentswith dementia in nonspecialized units of the samefacility in their ability to perform activities of dailyliving (392). The other study found that 13 residentsof one special care unit exhibited significantly fewercatastrophic reactions than 9 residents with demen-tia in nonspecialized units of the same facility (265).

Chapter 1--Overview and Policy Implications . 29

In the latter study, the special care unit residents alsointeracted significantly more with staff members,but there was no effect of the unit on the residents’ability to perform activities of daily living.

The samples for the six studies that used a controlgroup are larger than the samples for the nine studiesthat did not use a control group. Their researchdesign and implementation are more rigorous, andthe study outcomes are more precisely defined andmeasured. Use of a control group also increases thepresumed validity of their findings. On the otherhand, each of the studies has one or more methodo-logical problems that could affect the validity of itsfindings. Although the study samples are, on aver-age, larger than the study samples in the nine studiesthat did not use a control group, some of the samplesare still quite small. Selection bias is anotherproblem that could affect the validity of the studies’findings. If the special care unit residents and thecontrol group subjects differed in significant ways atthe start of the studies, these differences, rather thanthe impact of the special care unit, could account forthe observed outcomes. Randomization of subjectsto the special care unit or control group would be theideal way to address this problem, but familypreferences, subject attrition, and other factorsinterfered with randomization in one of the twostudies in which it was attempted (265,489). Othermethodological problems that could affect the valid-ity of the studies’ findings are discussed in chapter4.

Four studies evaluate the effect of special careunits on the unit staff over time. Three of thesestudies found no statistically significant effects(81,88,195). The fourth study found a significantreduction in stress among 15 special care unit staffmembers and a significant difference on one of threeindicators of burnout between the 15 special careunit staff members and 49 staff members onnonspecialized nursing home units (265). This studyalso found a statistically significant improvement inthe scores of the special care unit staff members onone of six indicators of job satisfaction. The studyfound no other significant effects of the special careunit on staff stress, burnout, or job satisfaction.

Three studies measured staff knowledge aboutdementia (81,88,265). In each of the studies, thespecial care unit staff members received trainingabout dementia. None of the studies found anystatistically significant effect of the training on the

special care unit staff members’ knowledge aboutdementia (see ch. 4).

Four studies evaluate the effect of special careunits on residents’ families over time. Two of thefour studies found no statistically significant effects(76,265). One of the remaining studies found asignificant increase in family members’ satisfactionwith the care provided for their relative withdementia over the 3-month period after the individ-ual was admitted to a special care unit (88). Theother study found a significant reduction in familymembers’ feelings of anxiety, depression, guilt, andgrief after their relative with dementia was admittedto a special care unit (489). One descriptive studyfound that families of special care unit residentswere significantly more likely than families ofresidents with dementia in nonspecialized nursinghome units to visit their relative regularly (413). It isnot clear whether the latter finding is attributable tothe effect of the special care units or to preexistingdifferences between the two groups of families,however.

A few of the 15 evaluative studies had negativefindings. Maas and Buckwalter report a trend forindividuals with dementia to become more activeafter being admitted to a special care unit (265). Thisincreased activity includes both positive behaviors,such as interacting with staff members, and negativebehaviors, such as noisiness, restlessness, and scream-ing. Bullock et al. found an increase in verbal abuseand resistiveness over time among the special careunit residents they studied (56).

Insummary, only two of the six evaluative studiesthat used a control group found any positive residentoutcomes. Only one of the four studies that evalu-ated the effect of special care units on the unit stafffound any positive outcomes, and only two of thefour studies that evaluated the effect of special careunits on residents’ families found any positiveoutcomes. For most outcomes, the positive findingsof one study are contradicted by the findings of otherstudies. Moreover, some of the statistically signifi-cant positive findings in these studies are relativelytrivial, and a few of the studies had negativefindings.

The limited positive findings in some of theseevaluative studies and the lack of positive findingsin other studies are surprising. After reporting thelack of positive findings in a study of families of


special care unit residents, one researcher com-mented:

Finally, I am left trying to reconcile these results,showing no special care unit superiority, with thepalpable sense of excitement, of mission, and ofrelief that the special care unit families, but not theother families, show (76).

This comment mirrors the response of manyresearchers and others to whom OTA has spoken inthe course of this study: that is, surprise that theevaluative studies conducted thus far generally donot show the positive outcomes they expected to findand thought they had observed informally.

Methodological problems may account in part forthe failure of some of the studies to find positiveoutcomes. Small sample sizes are a particularproblem because studies with very small sampleslack the statistical power to detect small, butclinically significant, positive outcomes (279).

In addition to methodological problems, numer-ous difficult conceptual and methodological issuescomplicate the process of designing and conductingspecial care unit research. Table 1-3 lists many ofthese issues, some of which are discussed in moredetail in appendix B.

Citing these methodological problems and con-ceptual and methodological issues, some commenta-tors discount the findings of the available studies.They imply that no credible research has been doneon special care units or that the studies that had nopositive findings had no findings at all.

In contrast, OTA concludes that at least the sixevaluative studies that used a control group arecredible studies in an area in which good research isdifficult to design and conduct. These studies werecarefully designed and implemented. The specialcare units they studied incorporated the patient carephilosophies, staff training, activity programs, andphysical design features recommended in the specialcare unit literature. Only one of the studies success-fully randomized subjects to the special care unit andthe control group, but the other studies used acceptedstatistical methods to correct for pre-existing differ-ences among the subjects that could affect theoutcomes. Although each of the studies has method-ological problems, it is unlikely the lack of positivefindings is due entirely to these problems. Despite

methodological problems, the studies’ findings aremeaningful and deserve careful consideration bypolicymakers, special care unit advocates, andothers.

It is important to note that none of the availablestudies directly measured the impact of special careunits on residents’ quality of life. Quality of life isdifficult to define operationally and particularlydifficult to measure in individuals with dementia.Several of the clinicians who reviewed this report forOTA pointed out, however, that improvements inresidents’ quality of life maybe the primary positiveoutcome of special care units.

Finally, for policy purposes, it is important to notethat the available evaluative studies provide little orno information about the effectiveness of differenttypes of special care units or particular features inspecial care units. In each of the six evaluativestudies with a control group, the special care unitsdiffered in many ways from the control groupsettings. 10 It is unclear whether the overall milieu ofthe special care units or their particular featuresaccount for the studies’ findings. If particularfeatures account for the findings, it is unclear whichfeatures.

The only evaluative study with a control groupthat found a significant effect of the special care uniton the residents’ ability to perform activities of dailyliving focused on a unit that was created with theaddition of an activity room but no other physicaldesign changes (392). The distinguishing character-istics of the unit, in the view of the researchers, werethe staff’s efforts to accomplish the followingobjectives:

. to identify residents’ specific cognitive impair-ments,

. to treat depression, delusions, and hallucina-tions,

. to identify medication side effects,● to maintain residents’ physical health,. to reduce the use of physical restraints, and. to increase residents’ participation in activities

(392).

The ongoing involvement of a psychiatrist on thestaff also seems to be unique to this study. It isunclear which, if any, of these characteristics aredifferent enough from the characteristics of the

10 Table 4.2 ~ Ch. 4 fists he ch~ges tit were ~de to create he Special Cme tits in each of the Six studies.


Table l-3-Conceptual and Methodological Issues in Designing andConducting Special Care Unit Research

• Special care units are extremely diverse. It is difficult to determine which units should be included ma study sample and which of the many possible unit characteristics are important to study. For purposesof evaluative research, it is difficult to determine whether the intervention to be studied should be theunit’s overall milieu or its particular features and, if particular features, which features.

• Individuals with dementia are extremely diverse. It is difficult to determine which of theircharacteristics are important to study.

• The characteristics of individuals with dementia are interrelated and changeover time. In the contextof an evaluative study, it is difficult to determine whether these changes reflect the progression of theresidents’ dementing disease or the effects of the special care units.

. Residents’ families and special care unit and other nursing home staff members are diverse. It is

●

•

Ž

•*

●

•

●

e

●

•o●

*

●

●

difficult to determine which of their characteristics are important to study.Many of the potentially important characteristics of the units, the residents, their families, and the staffmembers are conceptually vague, difficult to define operationally, and difficult to measure.The available assessment instruments do not include all the potentially important characteristics of theunits, the residents, their families, or the unit staff members. The reliability and validity of some ofthe available instruments has not been demonstrated, and many of the available instruments exhibitceiling or floor effects that obscure the full range of responses.There is insufficient baseline information about many potentially important resident, family, and staffcharacteristics.It is difficult to identify an appropriate control or comparison group.Preexisting differences between special care unit residents and individuals with dementia in othersettings are likely to bias a study’s findings. Because of family preferences and other factors, randomassignment of subjects to a special care unit or a control group setting maybe impractical.Researchers often cannot control the services that subjects in the control group receive.There is disagreement about the outcomes to be studied. This disagreement reflects different valuesin the care of nursing home residents with dementia and different expectations about the areas in whichpositive outcomes may be found.Many potentially important resident outcomes, e.g., quality of life and satisfaction with care, are verydifficult to measure in persons with dementia. The outcomes that are easiest to measure are likely tobe trivial.There are many conceptual and practical difficulties in obtaining consent for research participationfrom individuals with dementia and their families.Because of their cognitive impairments, nursing home residents with dementia are often unable toparticipate in conventional research interviews or to provide accurate information about themselves.Sensory impairments and physical illnesses exacerbate this problem.Proxy-derived information may not be reliable or valid.It is difficult to effectively blind interviewers to the subjects’ treatment status.Sample attrition is very high. Some special care unit studies have lost one-third or more of theirsubjects in a year. Although longer studies may be more likely to find significant effects, attrition isso great that the final sample may be too small to show the effects.The findings of small studies conducted in different special care units often cannot be pooled becauseof differences in the characteristics of the units.It is unclear when measurements should be made. New admissions to a special care unit may exhibittemporary negative effects of the move. Long-time residents may have experienced any positiveeffects of the unit before the beginning of the study.

SOURCE: Offke of Technology Assessment, 1992.


special care units in the other five evaluative studieswith a control group to account for their contradic-tory findings.

THE REGULATORYENVIRONMENT FOR SPECIAL

CARE UNITSBecause of the diversity of special care units, the

fact that existing units frequently do not incorporaterecommended physical design and other features,and pervasive claims that some special care unitsactually provide nothing special for their residents,many Alzheimer’s advocates, State officials, andothers believe there should be special regulations forspecial care units. As of early 1992, special regula-tions were in place or in various stages of develop-ment in many States:

●

●

●

●

●

Six States-Colorado, Iowa, Kansas, Tennes-see, Texas, and Washington-had special regu-lations for special care units.Five States-Nebraska, New Jersey, NorthCarolina, Oklahoma, and Oregon-were in theprocess of drafting or approving special regula-tions for special care units.One additional State-Arkansas-had legisla-tion mandating the development of specialregulations for special care units.Two States—Kentucky and Michigan-hadspecial requirements for special care units orspecial Alzheimer’s nursing homes establishedwith exemptions from the States’ certificate ofneed process.In three additional States—Arizona, Indiana,and Rhode Island, the State-appointed Alz-heimer’s task force or long-term care advisorycouncil had recommended the development ofregulations, and in two of the States—Arizonaand Rhode Island-the State-appointed bodyhad developed draft regulations.

At the State level, interest in regulating specialcare units is growing rapidly. In some States, thisinterest is unopposed. In other States, the issue ofspecial regulations for special care units is highlycontroversial.

State regulations for special care units have beenor will be superimposed on the existing regulatorystructure for nursing homes—a complex, multifac-eted structure with six major components:

1)

2)3)

4)

5)

6)

In

the Federal regulations for Medicare andMedicaid certification of nursing homes,State licensing regulations for nursing homes,State certificate of need regulations for nursinghomes,other State and local government regulationsthat affect nursing homes,the survey and certification procedures associ-ated with each type of regulations, andthe oversight procedures of each State’s Long-Term Care Ombudsman Program.

addition to these six components, Federal,State, and local government regulations for nursinghomes incorporate standards established by privateorganizations, such as the National Fire PreventionAssociation’s Life Safety Code standards. Specialcare units must comply with these standards, as wellas the regulations and survey, certification, andoversight procedures listed above and any specialregulations that may apply.

Special care unit operators and others oftencomplain that the regulations and survey, certifica-tion, and oversight procedures for nursing homesdiscourage innovation in special care units byinterfering with the use of physical design and otherfeatures they believe would be effective for residentswith dementia. OTA has been told about instances inwhich special care units could not get approval forthe use of innovative features of various kinds;instances in which approval was held up for years,thus adding enormously to the cost of establishingthe unit; and instances in which approval was givenby one government agency and later denied byanother government agency, sometimes after thespecial care unit opened. Thus, while there ispressure on the one hand for more regulation ofspecial care units, some people advocate less regula-tion, at least on a selective basis, to allow greaterinnovation.

The regulatory structure for nursing homes iscurrently in flux due to implementation of thenursing home reform provisions of OBRA-87 andrelated legislation. The nursing home reform provi-sions of OBRA-87 changed the Federal regulationsfor Medicare and Medicaid certification of nursinghomes and the survey and certification proceduresassociated with those regulations. Many provisionsof OBRA-87 are relevant to the frequently citedcomplaints about the care provided for nursing homeresidents with dementia. This section summarizes

Chapter l-Overview and Policy Implications . 33

OTA’s findings with respect to the relevant provi-sions of OBRA-87 and the existing State regulationsfor special care units. Both of these topics arediscussed at greater length in chapter 5.

On the basis of the information presented here andin chapter 5, OTA concludes that OBRA-87 pro-vides a better framework for regulating special careunits than any of the existing State special care unitregulations or any special regulations that could bedevised at this time. This conclusion and alternativesto address the concerns that lead some people toadvocate special regulations for special care unitsare discussed in a later section of this chapter, as aremethods to allow greater innovation in special careunits.

The Nursing Home Reform Provisionsof OBRA-87

Through OBRA-87, Congress sought to create acomprehensive regulatory structure that would as-sure high-quality, individualized care for all nursinghome residents. Under OBRA-87, a nursing homemust now meet the following requirements to becertified for Medicare or Medicaid:

●

●

●

●

●

“The facility must care for its residents in amanner and in an environment that promotesmaintenance or enhancement of each resident’squality of life.”‘‘The facility must promote care for residents ina manner and in an environment that maintainsor enhances each resident’s dignity and respectin full recognition of his or her individuality. ’‘‘The facility must conduct initially and period-ically a comprehensive, accurate, standardized,reproducible assessment of each resident’sfunctional capacity.’“The facility must develop a comprehensivecare plan for each resident that includes meas-urable objectives and timetables to meet aresident’s medical, nursing, mental, and psy-chosocial needs that are identified in thecomprehensive assessment. ’“Each resident must receive and the facilitymust provide the necessary care and services toattain or maintain the highest practicable physi-cal, mental, and psychosocial well-being, inaccordance with the comprehensive assessmentand plan of care” (463).

Chapter 5 lists other provisions of OBRA-87 thatare relevant to the frequently cited complaints about

the care provided for nursing home residents withdementia. These other provisions deal with main-taining residents’ functional abilities, providingactivities that meet residents’ needs, providingspecialized rehabilitative services, minimizing theuse of psychotropic medications and physical re-straints, allowing residents to use their own belong-ings, involving residents and their families in careplanning, training for nurse aides, and other issues.

The provisions of OBRA-87 rarely mentiondementia, but the resident assessment system devel-oped to implement OBRA-87 emphasizes the evalu-ation of a resident’s cognitive status and theproblems and care needs that are common amongnursing home residents with dementia (see ch. 5). Asjust noted, the regulations require that residents’needs must be assessed and that once their needs areidentified, appropriate services must be provided tomeet the needs.

If fully implemented, the provisions of OBRA-87would greatly improve the care of nursing homeresidents with dementia. Two factors could limit thebenefits of OBRA-87 for individuals with dementia.One obvious factor is a failure to implement theprovisions, which could occur for a variety ofreasons, including insufficient government fundingfor nursing home care, for inspections, or forsurveyor training. The second factor is lack ofknowledge among many nursing home administra-tors, staff members, and surveyors about whatconstitutes appropriate care for individuals withdementia-e. g., lack of knowledge about whatactivities and rehabilitative services would meet theresidents’ needs.

Existing State Regulations forSpecial Care Units

As noted above, six States—Colorado’ Iowa,Kansas, Tennessee, Texas, and Washington-hadregulations for special care units as of early 1992.Each of the States’ regulations address severalcommon areas, e.g., admission criteria, safety, stafftraining, and physical design, but their requirementsin these areas differ (see ch. 5). Each State requiressome features that are not addressed in the otherStates’ regulations, e.g., Iowa’s requirement that aunit and its outdoor area must have no steps or slopesand Washington’s requirement that the units floors’walls, and ceilings must be of contrasting colors.Some of the requirements are very detailed.


Thus far, State regulations for special care unitshave been developed largely without regard for theprovisions of OBRA-87. Some of the six States’requirements for special care units duplicate OBRArequirements that apply to all nursing homes. Someof the special care unit requirements, e.g., thosedealing with residents’ rights to have visitors, areweaker than the comparable OBRA requirements.

OTA’s analysis of the six States’ regulationsindicates several problems that are likely to arise inany special care unit regulations that could bedevised at present. First, by requiring particularfeatures in special care units, the six States’ regula-tions imply that those features are unique to or moreimportant in the care of residents with dementia thanin the care of other nursing home residents. Yet someof the required features probably are not moreimportant for residents with dementia than for otherresidents. Examples are Iowa’s and Tennessee’srequirements for an interdisciplinary care planningteam, Colorado’s requirement for sufficient staff toprovide for the residents’ needs, and Texas’ require-ment for a social worker to assess the residents onadmission, conduct family support group meetings,and identify and arrange for the use of communityresources. If these features are important for allnursing home residents, it is misleading and poten-tially harmful to residents of nonspecialized units torequire the features differentially for special careunits.

Second, by requiring particular features in specialcare units, the six States’ regulations imply thatthose features are more important in the care ofresidents with dementia than other features that arenot required by the regulations. Yet experts indementia care disagree about which features aremost important in the care of these residents. Theexisting special care unit regulations emphasize stafftraining and physical design features and place farless emphasis on specialized activity programs andprograms to involve and support residents’ families.Although there is no research-based evidence thatany of these features are more likely than the othersto produce positive resident outcomes, some expertsin dementia care would undoubtedly argue thatspecialized activity programs and family supportprograms are as important as staff training andphysical design features in the care of these resi-dents.

Third, by requiring particular features in specialcare units, the six States’ regulations imply that theresources available to the unit should be expendedfor the required features rather than other features.Since most special care units have limited resources,features not required in special care unit regulationsare likely to be neglected.

The six States’ requirements for physical designfeatures are especially troublesome, in part becausethey are so detailed. To incorporate some of therequired features involves extensive remodeling,with obvious cost implications. In some facilities,the required features cannot be incorporated, evenwith extensive remodeling. For such facilities, therequirements can lead to costly new construction ora decision by the nursing home not to establish aspecial care unit (337). If there were evidence of theeffectiveness of particular physical design features,it might be reasonable to require the features. Torequire the features without such evidence is proba-bly inappropriate.

The impact of the six States’ special care unitregulations on the growth of special care units ineach State is unclear. Anecdotal evidence suggeststhat the regulations have discouraged some nursinghomes from establishing special care units. TheStates vary in the extent to which they are enforcingtheir regulations, but several nursing homes in atleast two of the States have closed their special careunit because the unit could not meet the Staterequirements (169,267). It is possible that specialcare unit regulations could cause the closing of unitsthat provide good care for their residents, eventhough they do not meet one or more of the Staterequirements. There is no evidence to determinewhether this has occurred.

As noted earlier, Oklahoma is developing regula-tions for special care units. The regulations areintended by their supporters to set a‘ ‘basic standardof care,” rather than to define what would be ‘‘idealor high-quality care” (118). In the developmentprocess, the draft regulations have become increas-ingly detailed, moving away from what some of theirsupporters first envisioned as broad, general guide-lines that would inform families, nursing homeadministrators, and others about what constitutesbasic care. In the spring of 1992, a telephonefollowup to the 1991 survey of all U.S. nursinghomes with more than 30 beds found that someOklahoma nursing homes that had a special care unit


in 1991 reported they had since closed the unit (246).When asked why they had closed their special careunit, most of the respondents declined to give areason, but one respondent said the unit in hisfacility had been closed in anticipation of verydetailed regulatory requirements the unit would notbe able to meet. OTA has no information about thequality of care provided by this unit or any of theother special care units in Oklahoma that wereclosed between 1991 and 1992.

POLICY IMPLICATIONSFindings from the available research on special

care units and the information just presented aboutthe regulatory environment for special care units andproblems with the existing State special care unitregulations have implications for each of the policyareas addressed in this report: consumer education,research, regulation, and reimbursement.

Implications for Consumer Education AboutSpecial Care Units

The diversity of existing special care units sub-stantiates the need for consumer education. Familiesand others who make decisions about nursing homecare for individuals with dementia could reasonablyassume that all special care units are alike. Theyneed to know that special care units vary in virtuallyevery respect, including the number of residents theyserve, their patient care philosophies and goals, theirphysical design features, their staff-to-resident ra-tios, their admission and discharge policies, andtheir charges. Ideally families and others would haveeasy access to information about each of thesecharacteristics for the special care units they areconsidering. If such information is not available,families and others need to know what questions toask to obtain the information when they call or visita special care unit.

To compile information about the special careunits in a given jurisdiction would be more or lessdifficult, depending on the number of units in thejurisdiction. In jurisdictions with more than onespecial care unit, definitional issues would have tobe resolved so that information about different unitswould be comparable. Since the units are likely tochange over time, an ongoing effort would berequired to update the information.

Compiling and updating information about thespecial care units in a given jurisdiction could be aproject of an Alzheimer’s Association chapter,another private agency, or a public agency .11 Inmostjurisdictions, a local agency would be the mostappropriate organization to perform this task. Be-cause of the amount of detail involved and thenecessity for frequent updates, the information couldnot be effectively compiled and updated at theFederal level. In States with relatively few specialcare units, it probably could be compiled andupdated at the State level.

Descriptive information about the characteristicsof particular special care units would be useful tofamilies and others because the characteristics ofsome units (e.g., the units’ patient care philosophies,discharge policies, or design features) would matchtheir individual needs, preferences, and values. Itshould be recognized, however, that the availableresearch findings do not provide objective standardsto help families and others evaluate special careunits. Although some unit characteristics may seemright intuitively and match the needs, preferences,and values of some families, the available researchfindings do not prove that any particular unitcharacteristics are associated with better residentoutcomes.

Based on the available information, the messagefor consumers is that special care units vary greatly;that there is little research-based evidence of betterresident outcomes in special care units than innonspecialized units; and that although a givenspecial care unit may have better resident outcomesthan another special care unit or a nonspecializedunit, there is no research-based evidence to identifythe unit characteristics that explain the differentoutcomes. On the positive side, it can be said thatspecial care units are likely to have fewer residentsand more staff members per resident than nonspe-cialized nursing home units; that in comparison withthe residents of nonspecialized units, special careunit residents are less likely to be physicallyrestrained; and that even though there is littleresearch-based evidence of better resident outcomesin special care units than in nonspecialized units,there is much less evidence of worse outcomes inspecial care units. Consumers need to know, how-ever, that these statements refer to averages that maynot apply to a given unit. Although this message

11 IU some jfis&ctions, a public or private agency compiles and updates similar types of information about IOCd nursing homes.

36 . Special Care Units for People With Alzheimer’s and Other Dementias

does not meet the need for objective standards toevaluate special care units, it does accurately repre-sent what is known about the units.

A few States have or are developing consumereducation materials about special care units. NewHampshire has published an 8-page booklet in-tended for family members who are trying toevaluate special care units and nursing home opera-tors who are interested in establishing a special careunit (325). The booklet describes the characteristicsof an individual with Alzheimer’s disease, the needsof the individual and the family, and the characteris-tics of specialized dementia care. It provides ques-tions and a checklist that families can use to evaluatespecial care units. For nursing home operators, thebooklet lists reasons for having a special care unit,questions the nursing home operator and staff shouldconsider in establishing a special care unit, andfactors that will influence the success of the unit.

The American Association of Homes for theAging, the Massachusetts Alzheimer’s Disease Re-search Center, the National Institute on Aging’sAlzheimer’s Disease Education and Referral Center,the University of South Florida’s Suncoast Geron-tology Center, and the University of Wisconsin-Milwaukee’s Center for Architecture and UrbanPlanning Research have developed guidelines forspecial care units, and other organizations aredeveloping such guidelines (see ch. 5). The Alz-heimer’s Association released its special care unitguidelines in July 1992. Some of these organiza-tions’ guidelines are intended primarily to assistfamilies in evaluating special care units and otherorganizations’ guidelines are intended primarily toassist nursing home operators in planning andsetting up a special care unit.

OTA’s review of the various organizations’ spe-cial care unit guidelines indicates that the guidelinesare quite similar in content, despite some differencesin emphasis, format, and wording. Each organiza-tion’s guidelines cite numerous unit characteristicsthe organization considers desirable. This informa-tion is useful for families and others who are tryingto evaluate special care units, but consumers need toknow that statements about the desirability of par-ticular unit characteristics are based on expert opin-ion and that experts disagree about these matters.

Information about the theoretical concepts ofspecialized dementia care discussed earlier in thischapter may also be useful for families and others

who are trying to evaluate special care units. Theyneed to know, however, that the concepts are notimplemented in all special care units and that thesame concept may be implemented differently, withdifferent results, in different units.

Given the availability of special care unit guide-lines developed by various organizations, there is noneed for Federal agencies to develop additionalguidelines. Federal agencies that serve elderly peo-ple and their families could play a valuable role,however, in disseminating the available guidelinesand promoting their use.

As noted earlier, the task of compiling andupdating information about the characteristics ofspecial care units in a given jurisdiction is probablymost effectively performed by local agencies, in-cluding Alzheimer’s Association chapters. In somejurisdictions, however, local agencies that receiveFederal funding, such as area agencies on aging(AAAs), might be the most appropriate organiza-tions to perform the function.

In thes summer of 1992, the Alzheimer’s Associa-tion contracted for a study to identify and documentconsumer problems with special care units. Theresults of this study, which will be available in thespring of 1993, will provide useful informationabout the extent and types of problems families andothers encounter in dealing with special care unitsand may indicate a need for additional governmentinitiatives in this area.

Implications for Research onSpecial Care Units

The findings of the available special care unitstudies confirm the need for research on manyunresolved issues. For public policy purposes, themost important research issues are those pertainingto effectiveness. Evaluative research is needed toanswer three interrelated questions about the effec-tiveness of special care units for their residents:

1)

2)

3)

Do special care units improve resident out-comes?If so, is it the overall milieu or particular unitcharacteristics that are effective, and if it isparticular unit characteristics, which charac-teristics?Are special care units effective for all nursinghome residents with dementia or only certain


types of residents with dementia, and if onlycertain types, which types?

Research on the effectiveness of special care unitsfor residents’ families, unit staff members, andnondemented nursing home residents is also needed.

Descriptive information is needed to provide abetter general understanding of special care unitsand to develop descriptive topologies. Such typolo-gies, which would be based on unit and perhapsresident characteristics, are important for designingevaluative studies and understanding and generaliz-ing from their findings. To be useful for publicpolicy purposes, descriptive topologies must repre-sent the full range of existing units.

Information is needed about the cost of caring forindividuals with dementia in special care units vs.nonspecialized nursing home units. Because of thediversity of special care units, this information willbe useful only if it is developed in the context of aninclusive typology of the units.

OTA is aware of several sources of forthcomingdescriptive information that will meet some of theseneeds. One source is the 1991 survey of all nursinghomes with more than 30 beds. The survey’sfindings with respect to the proportion of nursinghomes that had a special care unit in 1991 were citedearlier in this chapter. The survey also includedquestions about the physical features of the units,their admission and discharge criteria, staff trainingprograms, staff support groups, activity programs,family programs, and sources of reimbursement.

A second source of forthcoming descriptiveinformation is the resident assessments mandated bythe nursing home reform provisions of OBRA-87.All Medicare and Medicaid-certified nursing homesare now required to assess each of their residents,including special care unit residents, at the time ofthe residents’ admission to the nursing home andannually thereafter. OBRA-87 mandated the devel-opment of a set of core items to be addressed in therequired assessment, and the core items include each

of the resident characteristics discussed in thischapter.

Lastly, as noted earlier, the Multi-State NursingHome Case-Mix and Quality Demonstration in-cludes special care unit residents among the 6800nursing home residents in the study sample. Infor-mation has been collected on more than 300residents of 20 special care units in 6 States (137). ToOTA’s knowledge, this study is the first to includea time-and-motion analysis of resource use inspecial care units.

Given the pervasive complaints and concernsabout the care provided for nursing home residentswith dementia, the extensive involvement of govern-ment in regulating nursing homes and paying fornursing home care, and the competing claims ofspecial care unit advocates and critics, one mightexpect that Federal agencies would have fundedmany special care unit studies. In 1984, the TaskForce on Alzheimer’s Disease of the U.S. Depart-ment of Health and Human Services noted the needfor this research (470). In 1986, Congress mandatedspecial care unit research (P.L. 99-660), but fundingfor the research was never appropriated. Between1986 and 1990, seven Federal agencies each pro-vided funding for one special care unit study .12Three of the studies were small pilot studies, and twowere relatively small components of large-scalenursing home studies. Two of the National Instituteon Aging’s Alzheimer’s Disease Research Centerseach provided funding for one special care unitstudy. The Alzheimer’s Association, the BrookdaleFoundation, the State of California, and threeuniversities each provided funding for one specialcare unit study. Most of the other special care unitstudies have been small pilot studies with no fundingsource. 13

In 1990, the Alzheimer’s Disease Research Centerat Washington University in St. Louis sponsored aspecial care unit conference that included workshopsfor researchers. The intent of the workshops was toidentify the problems that were obstructing progressin special care unit research. Many interrelated

12 The seven agencies and the studies for which they provided full or partial funding are: 1) ~“ “stration on Aging: “Special Care Units forAlzheimer’s Disease Patients: An Exploratory Study of Dementia Speciilc Units” (64); 2) Agency for Health Care Policy and Research: 1987 NationalMedical Expenditure Survey (249); 3) Department of Veterans Affairs: “A Comparison of Alzheimer Care Units: Veterans Administration State, andPrivate” (232); 4) Health Care Financing Administration: Multi-State Nursing Home Case-Mix and Quality Demonstration (144,382); 5) HealthResources and Services A&mm“ “stration: “Hospitalization Rates in Nursing Home Residents With Dementia: A Pilot Study of the Impact of a SpecialCare Unit” (99); 6) National Center for Nursing Research: “Nursing Evaluation Research: Alzheimer’s Care Unit” (265); and 7) National Institute onAging: “Five-State Study of Special Care Units in Nursing Homes” (194).

Is ‘r’ables 3-1% b, and c in & 3 and tables L&l ~d A-Z in Ch. A ~St tie funding Sources for ~1 the speci~ cme unit studies discussed in ~S RpOfi.


problems were identified, including the difficulty ofobtaining funding for special care unit research, thedifficulty of getting special care unit researchpublished, and numerous conceptual and methodo-logical issues in designing and conducting this kindof research (see app. B). Following the conference,the researchers formed an ad hoc group, theWorkgroup on Research and Evaluation of SpecialCare Units, to address the identified problems. Bythe end of 1991, the workgroup had over 100members (193). It has no formal sponsor and nofunding.

In the fall 1991, the National Institute on Agingfunded nine studies under anew “Special Care UnitsInitiative, ’ and the agency funded a tenth study inearly 1992. Two of the studies will develop descrip-tive topologies of special care units. Two otherstudies will compare service use and costs forspecial care unit residents and demented and nonde-mented residents in nonspecialized units in a total of24 nursing homes. Another study will compareresident outcomes in the special care units andnonspecialized units in the Multi-State NursingHome Case-Mix and Quality Demonstration.

The National Institute on Aging’s “Special CareUnits Initiative” represents a major commitment tospecial care unit research. The results of the 10studies will greatly expand knowledge about specialcare units. Moreover, the studies were funded underan arrangement that requires the 10 research teamsto collaborate on the development of commondefinitions and assessment procedures so that, al-though the studies focus on different issues, theirfindings will be comparable.

As noted earlier, the effectiveness of special careunits is the most important research issue for publicpolicy purposes. Although several of the NationalInstitute on Aging studies will evaluate the effec-tiveness of the units they are studying, the complex-ity of the policy-related questions about effective-ness means more research will be needed on thisissue. Some researchers believe that a clinical trialwith a randomized case control design will eventu-ally be needed to determine the effectiveness ofspecial care units (143,41 1). Currently funded stud-ies will provide the basis for designing such aclinical trial. The legal and ethical issues discussedlater in this chapter also raise important policy-related questions that are not addressed in theNational Institute on Aging studies.

To complement special care unit research, studiesare needed in two broad areas:

1.

2.

physical design features and care methods forpeople with dementia generally; andalternatives to special care units, includingspecial programs for nursing home residentswith dementia in nonspecialized units, specialresidential care programs inboard and care andassisted living facilities, and special adult dayand in-home services.

Studies in the first area can be conducted inspecial care units or in other residential and nonresi-dential care settings. It may be easier and moreefficient to conduct some of these studies in specialcare units, however, because all the residents havedementia.

Research on specific design features and patientcare methods may help to explain the findings ofspecial care unit research. If certain design featuresor care methods are shown to be effective orineffective in general or for certain types of resi-dents, those findings may explain the results ofspecial care unit studies. More importantly perhaps,studies of specific design features and care methodscan identify features and methods that will improvethe care of residents with dementia in nonspecializedunits and other settings as well as in special careunits.

The Robert Wood Johnson Foundation and theCleveland Foundation have funded research onvarious design features and patient care methods intwo special care units at the Corinne Dolan Alz-heimer’s Center in Chardon, OH. Studies of this kindhave also been conducted in some of the special careunits at VA medical centers (159). Three special careunits that constitute the Dementia Study Unit at theVA medical center in Bedford, MA, have been thesite for numerous studies on the care of individualswith dementia in the late stages of their illness. ToOTA’s knowledge, the Dementia Study Unit is theonly research group in the country to focus its effortson the difficult, emotionally charged, clinical issuesin late-stage and terminal care for individuals withdementia. The research group has studied swallow-ing and feeding difficulties (476), tube feeding(475), use of antibiotics vs. palliative measures totreat fever in late-stage patients (135), and use of ahospice-like approach to care for late-stage patients(474).


Implications for Government Regulation ofSpecial Care Units

The diversity of special care units, the fact thatexisting units often do not incorporate the featuresrecommended for special care units, and pervasiveclaims that some special care units just use the wordsspecial care as a marketing tool and actually providenothing special for their residents lead many Alz-heimer’s advocates, State officials, and others tosupport the development of special regulations forspecial care units. On the other hand, the lack ofagreement among experts about what features aremost important in the care of residents with demen-tia and the lack of research-based evidence showingthat any particular features are associated with betterresident outcomes make it difficult to justify theselection of particular features that should be re-quired in special care units.

The Alzheimer’s Association has developed leg-islative principles that identify 11 areas a Stateshould include when drafting special care unitlegislation or regulations: 1) statement of mission,2) involvement of family members, 3) plan of care,4) therapeutic programs, 5) residents’ rights,6) environment, 7) safety, 8) staffing patterns andtraining, 9) cost of care, 10) quality assurance, and11) enforcement (4). As described in chapter 5, thespecial care unit guidelines developed by variousorganizations identify similar areas that requirespecial consideration in the care of nursing homeresidents with dementia. Thus, there appears to besome agreement about the areas of concern.

Having agreement about areas of concern ishelpful in “thinking about the particular features thatmight be desirable or required in special care units,but agreement about areas of concern is not the sameas agreement about particular features. For example,agreement that therapeutic programs and physicalenvironment are areas of concern does not constituteagreement about which therapeutic programs orphysical design features should be required. OTAhas observed that in discussions about special careunit regulations, agreement about areas of concernoften masks considerable disagreement about partic-ular features and gives an erroneous impression thatthere is consensus about the particular features thatshould be required.

As noted earlier, OTA’s analysis of the existingState regulations for special care units indicates

several problems that are likely to arise in anyspecial care unit regulations that could be devised atpresent. First, regulatory requirements for particularfeatures in special care units imply that thosefeatures are unique to or more important for specialcare unit residents than for other nursing homeresidents. Yet many of the features that are importantfor special care unit residents are probably just asimportant for other residents. This is especially truesince most nursing home residents with dementia arenot in special care units now and may never be.

Second, regulatory requirements for particularfeatures in special care units imply that thosefeatures are more important in the care of specialcare unit residents than other features that are notrequired by the regulations and that the resourcesavailable to the unit should be expended for therequired features. Most special care units havelimited resources, so features that are not required inspecial care unit regulations are likely to be ne-glected. Yet experts in dementia care disagree aboutwhich features are most important in the care ofthese residents.

The problem of special care unit regulations thatomit features regarded as important by some demen-tia experts could be solved by expanding theregulations to require those features. The more theregulations are expanded, however, the more likelyit is that the required features will be important forother nursing home residents as well.

Given these problems, OTA concludes that OBRA-87 provides a better framework for regulatingspecial care units than any special regulations thatcould be devised at this time. The advantages ofOBRA-87 are its comprehensiveness, its emphasison individualized care, and its mandated assessmentand care planning procedures. The primary problemwith OBRA-87 for special care units is the sameproblem faced by anyone who ties to developregulations for special care units: i.e., the lack ofagreement among experts about what features aremost important in the care of residents with demen-tia and thus what should be special about special careunits. Solving this problem through support forresearch to evaluate the effectiveness of particularfeatures may eventually provide a substantive basisfor special care unit regulations. In the meantime, itis important to consider alternate ways of addressingthe concerns that have led many Alzheimer’s


advocates, State officials, and others to favor thedevelopment of special care unit regulations.

Alternatives to Special Care Unit Regulations

Alzheimer’s advocates, State officials, and otherswho favor the development of special care unitregulations often cite the need to protect individualswith dementia from poor-quality care and the needto protect these individuals and their families fromnursing homes that claim to provide special care butactually do not. Some people who favor the develop-ment of special care unit regulations also cite a needto assist nursing homes in designing their specialcare units and to assist surveyors in inspecting theunits. Each of these objectives can be achievedwithout special regulations.

In discussions about special care unit regulations,it is sometimes suggested that there are two types ofspecial care units—’ good’ units and ‘bad’ units—and that regulations are needed to eliminate the“bad’ units. In this context, it is probably more ac-curate to think about four types of special care units:

1.

2.

3.

4.

units that provide the features a given observerconsiders important for residents with demen-tia,units that do not provide those features but doprovide other features the unit operator, staff,or advisers consider important for residentswith dementia,units that claim to provide special care butactually provide nothing special for theirresidents, andunits that provide poor-quality care that wouldbe inappropriate for any nursing home resi-dent.

Anecdotal evidence suggests that there are veryfew units of the last type, and the one study that hasaddressed this issue supports that conclusion (154).OBRA-87 provides a sufficient basis for censuringunits of that type, without the need for specialregulations.

Most special care units are of the first three types.Objective classification of particular units into thesetypes would be difficult, since the classificationdepends on a given observer’s opinion about thefeatures that are important in a special care unit anda judgment about the intentions of each facility’sadministrators. Although some nursing home ad-ministrators may knowingly provide no specialservices in their special care unit, other administra-

tors probably believe erroneously that they areproviding appropriate care. One commentator refersto the latter units and their administrators as“innocent” (21).

An earlier section of this chapter discussed theneed for consumer education about special careunits. As noted there, families and others who aretrying to evaluate special care units need to knowthat existing units vary greatly. They need compara-ble information about the characteristics of thespecial care units in their geographic area andinformation about characteristics that may be impor-tant in a special care unit. Lastly, they need to knowthat experts disagree about the importance of partic-ular unit characteristics and that their personalpreferences and values are relevant in selecting aunit. These types of information will not protect allpotential special care unit residents and their fami-lies from nursing homes that provide no specialservices in their special care unit. Neither will theseindividuals be protected, however, by regulationsthat require special care units to incorporate featuresthat have not been proven to be effective.

For the purpose of consumer protection, nursinghomes could be required to disclose certain informa-tion about their special care units to potentialresidents and their families. In particular, they couldbe required to disclose what is special about the unit;how the unit differs from nonspecialized units in thesame facility; how physical restraints and psy-chotropic medications are used in the unit; whetherthere are behavioral problems that cannot be handledon the unit; whether it is expected that individualswho are admitted to the unit will be dischargedbefore their death and, if so, for what reasons. Adisclosure requirement could be mandated at theFederal level within the framework of OBRA-87 orat the State level within the framework of Statelicensing regulations. Such a disclosure requirementwould be quite different from regulations thatrequire particular features in a special care unit. Itwould make useful information available to con-sumers without suggesting that particular featuresare known to be effective. A disclosure requirementwould not eliminate the need for the other types ofconsumer information described above.

Guidelines are the best method to assist nursinghomes in designing their special care units. Severalof the guideline documents mentioned earlier in thischapter and discussed at greater length in chapter 5


are intended primarily for this purpose.14 More sothan regulations, guidelines can convey the objec-tives of specialized dementia care, the currentuncertainty about the most effective methods ofcare, and the need for innovation and evaluativeresearch in special care units.

Surveyor guidelines developed within the frame-work of OBRA-87 are the best method to assistnursing home surveyors in inspecting special careunits. Since 1989, the Joint Commission on Accred-itation of Healthcare Organizations (JCAHO) hasbeen working on guidelines to help its surveyorsevaluate special care units. JCAHO is a privateorganization that accredits hospitals, home healthagencies, mental health organizations, and about1000 nursing homes in the United States (214). Thecommission’s effort to develop guidelines evolvedfrom its surveyors’ questions about how to evaluatethe increasing number of special care units they wereseeing in nursing homes accredited by the commis-sion (434).

JCAHO’s draft surveyor guidelines provide whatis, in effect, a detailed answer to the question, ‘Whatconstitutes appropriate care for nursing home resi-dents with dementia?’ The guidelines are based onthe commission’s standards for all nursing homes(435). No changes have been made to the basicstandards. Instead, statements have been added nextto many of the standards to explain the implicationsof the standard for the care of residents withdementia and to describe the process the surveyorshould follow in scoring the special care unit on thatstandard. Although some commentators may dis-agree with some of the statements, the JCAHOguidelines provide a valuable model which could beadapted to OBRA regulations.

Waivers and Other Methods To AllowInnovation in Special Care Units

As noted earlier, special care unit operators andothers often complain that the existing regulationsand survey and certification procedures for nursinghomes discourage innovation by interfering with theuse of physical design and other features theybelieve would be effective for residents with demen-tia. From a societal perspective, one objective, and

perhaps the most important objective, of special careunits is to develop better ways of caring for nursinghome residents with dementia. To accomplish thisobjective, methods must be found to allow andencourage innovation in special care units.

One method to allow greater innovation in specialcare units is to eliminate regulations that restrictinnovative physical design and other features. Al-though this method may eventually be appropriate,the current lack of agreement about the features thatare important in a special care unit and the lack ofresearch-based evidence for the effectiveness ofparticular features make decisions to eliminateexisting regulations premature.

A better method is to create a process by whichindividual special care units could obtain waivers toimplement physical design features, patient carepractices, and other innovations they believe willbenefit residents with dementia. Most existingregulatory codes have a process for granting waiv-ers, but in some and perhaps many States, thewaivers that are granted are for relatively trivialchanges (201). The purpose of creating a waiverprocess for special care units would be to allow theimplementation and evaluation of nontrivial innova-tions. Since such innovations would change the careof individuals with dementia in significant ways, thewaivers should only be granted on a facility-by-facility basis after careful prior review by a panelthat includes health care professionals, consumeradvocates, industry representatives, architects, de-signers, surveyors, fire marshals, building inspec-tors, and others. The panel would have to determinewhether a proposed innovation was worth evaluat-ing and whether sufficient safeguards had been builtinto the proposal to protect the residents. The panelwould also have to monitor the waivered innova-tions on an ongoing basis to assure the safety andwell-being of the residents. A panel of this kindprobably would function most effectively at theState level, but the Federal Government couldencourage the development of such panels throughdemonstration grants.

At present, State efforts with respect to specialcare units are focused primarily on the development

14 E-Pl~~ of @&~c dOCW~nt~ int~~d~d to assist n~sing homes in &Si@g a special Care tit are tie American Association Of Homes fOrthe Aging’s “Best Practices” document (10); the Massachusetts Akheimer’s Disease Research Center’s “Blueprint” document (287); the Universityof Wisconsin-Milwaukee’s Center for Architecture and Urban Planning Research’s “Design Guide” (95); and the Alzheimer’s Association’s“Guidelines for Dignity,’ released in July 1992. The forthcoming VA guidelines for special care units in VA medical centers will also be useful fornursing homes that are trying to establish a special care unit.


of special regulations. To OTA’s knowledge, noState has created a process for waiving regulationsthat interfere with innovation in special care units. Afew States have provided grants to nursing homesand other facilities to create model special care units.In at least one of these States, the State’s ownregulations made it difficult for some of the facilitiesthat received the grants to implement the featuresthey considered appropriate for individuals withdementia, thus defeating the purpose of the grants. Ifspecial care units are to fulfill the societal objectiveof developing better methods of care for nursinghome residents with dementia, policies to allow andencourage innovation must receive at least as muchattention as methods to regulate and control theunits.

In addition to a waiver process, several othermethods to allow and encourage innovation inspecial care units are discussed in chapter 6. Someof the methods pertain primarily to special careunits, e.g., providing training materials and pro-grams to inform surveyors and others about prob-lems in the care of nursing home residents withdementia and the importance of developing alternateapproaches to their care. Other methods pertain to allresidential facilities for older people, e.g., simplify-ing the process for obtaining approval of new designor other features, eliminating conflicts and inconsis-tencies in the requirements of different agencies andregulatory codes, and including in any new regula-tions an explicit statement of the purpose of eachrequirement; such a statement would provide gov-ernment officials with a basis for allowing innova-tions that meet the purpose, if not the precisestipulations, of the requirement.

Fire safety regulations and interpretations of firesafety regulations are often cited as limiting the useof innovative physical design features in special careunits. A conference or invitational meeting jointlysponsored by the Alzheimer’s Association, theNational Fire Protection Association, and the Fed-eral Government would be a valuable first step indelineating this problem and identifying possiblesolutions.

Implications for Reimbursement forSpecial Care Units

Although most special care unit operators reportthat it costs more to create and operate a special careunit than a nonspecialized nursing home unit, somespecial care unit operators disagree. As noted earlier,the cost of new construction or remodeling to createa special care unit varies greatly for different units.Ongoing operating costs also vary. This variation incosts provides little justification for an across-the-board increase in government reimbursement forcare in special care units.

Ninety percent of government-funded nursinghome care is paid for by Medicaid (250). Medicaidreimbursement for nursing home care varies indifferent States. It is low in many States and very lowin some States. High-quality nursing home care forindividuals with dementia probably costs more thanMedicaid pays in these States, regardless of whetherthe care is provided in a special care unit or anonspecialized unit. High-quality nursing home carefor individuals with other diseases and conditionsprobably also costs more than Medicaid pays inthese States. To improve quality of care, it may benecessary to increase Medicaid reimbursement forall nursing home care in these States. In the contextof this OTA report, however, the question is whetherreimbursement should be increased differentially forspecial care units.15

The results of two studies cited earlier indicatethat average staff time and therefore the average costof care is higher for residents with dementia inspecial care units than in nonspecialized nursinghome units (143,413). If future studies confirm thisfinding, one could argue that government reimburse-ment should be increased differentially for care inspecial care units. If the higher average cost of carein special care units is not associated with betterresident outcomes, however, increasing governmentreimbursement will raise government expendituresand create financial incentives for the establishmentof more special care units without necessarilyimproving the care available for individuals withdementia----dearly not a desirable result. On theother hand, if the higher average cost of care in

15 Arelat~but~erentquestiOn is whethergovernment reimbursement should be increased differentially for nursing home residents witi dementkvs. nondemented residents in any nursing home unit. Two studies have found that certain types of residents with dementia (i.e., those who do not havesevere impairments in activities of daily living or extensive medical care needs) use more staff time and therefore more of a nursing home’s resourcesthan nondemented residents who have the same impairments and medical care needs (16,144). Given these findings, it would be reasomble forgovernment to differentially increase reimbursement for these types of residents with dementia.

Chapter 1--Overview and Policy Implications ● 43

special care units is associated with better outcomesfor individuals with dementia, policymakers will befaced with a difficult question of values, sinceincreasing government reimbursement for the careof demented and nondemented residents in nonspe-cialized units would probably produce better out-comes for those individuals as well.

In the past, reimbursement for nursing home careinmost State Medicaid programs was based on a flatrate system that paid nursing homes at the same ratefor each of their Medicaid-eligible residents, regard-less of differences in the resources required for eachindividual’s care. As of 1990, 19 State had switchedto case-mix systems to determine the level ofMedicaid reimbursement for nursing home care(51). Case-mix systems are intended to match thelevel of reimbursement for individual residents tothe resources used and therefore the cost of their care(142). To implement an increase in governmentreimbursement for care in special care units proba-bly would involve more complex mechanisms inStates with case-mix vs. flat rate reimbursementsystems. Such an increase is not indicated, however,unless and until there is better evidence than iscurrently available that special care units improveresident outcomes.

LEGAL AND ETHICAL ISSUES INSPECIAL CARE UNITS

Because of the cognitive impairments of specialcare unit residents, difficult legal and ethical issuesarise in connection with many aspects of their care.These issues are not unique to special care units, butthey tend to be magnified in special care unitsbecause of the concentration of individuals withdementia and the likelihood that they are in the laterstages of their illness and at least moderatelycognitively impaired.

Many of the difficult legal and ethical issues in thecare of individuals with dementia have been ana-lyzed at length in three previous OTA reports(457,458,459) and in a supplement to The MilbankQuarterly based on OTA contract documents (496).These issues are: criteria and procedures for deter-mining an individual’s decisionmaking capacity;methods of enhancing decisionmaking capacity;competency determinations; criteria and proceduresfor designating a surrogate decisionmaker; rightsand responsibilities of family members as surrogatedecisionmakers; criteria for surrogate decisions;

guardianship and conservatorship; decisions aboutfinancial matters, use of services, and medical carein the end of life; advance directives; the role ofethics committees; risk taking and professional andprovider liability; and the ethical aspects of resourceallocation. Other agencies and individuals have alsowritten extensively about many of these issues.

This section describes some of the particularlytroublesome legal and ethical issues that arise withrespect to three aspects of the care of individualswith dementia in special care units: locked units,admission and discharge, and informed consent forresearch participation. These issues and many of theissues noted above require further clarification andanalysis as they apply to special care units.

The 1991 report of the Advisory Panel onAlzheimer’s Disease includes a section on values(2), and the panel is working on a report on legalissues in the care of individuals with dementia (450).The panel’s 1991 report discusses value differencesand potential value conflicts among the four mainconstituencies involved in the care of individualswith dementia: the individuals, their families, formalservice providers, and the public. Although notfocused on special care units, the panel’s analysis ofthese value differences and potential value conflictsis relevant to some of the most difficult ethicalquestions that arise in special care units, e.g.,questions about whose interests should be givenprecedence in defining the goals of care, makingday-to-day decisions about care, and selecting theoutcomes to be studied in special care unit research.In each of these areas, nondemented nursing homeresidents constitute an important fifth constituencywhose interests must be considered.

Issues With Respect to Locked Units

At least three-quarters of existing special careunits have an alarm or locking system to keepresidents from leaving the unit unescorted or withoutstaff knowledge. Probably at least half of these unitsare locked, although the exact proportion is notknown and undoubtedly varies from State to State.

People’s attitudes about locked special care unitsdiffer (20,178). Some people regard locked units asa way of providing greater freedom and autonomyfor individuals with dementia who otherwise mightbe physically restrained or medicated to keep themfrom wandering away from the unit. At the otherextreme, some people regard locked units as a form


of involuntary confinement that restricts freedomand autonomy and violates the civil rights ofindividuals with dementia. Some people considerlocked units a necessary placement option, whereasothers consider them unnecessary and argue thatwandering residents can be managed effectively inan unlocked unit with an alarm system.

People distinguish in various ways betweenlocked units they regard as acceptable and lockedunits they regard as unacceptable. Some peopleregard locked units that provide adequate staff andactivities as acceptable and locked units that do notprovide these features as unacceptable. Likewise,some people regard as acceptable locked units thathave direct access to an outdoor area, such as anenclosed courtyard or garden, where residents canwander freely (although they are still confined),whereas they regard as unacceptable locked unitsthat do not have such an outdoor area. It is unclearwhether these differences are important from a legalor an ethical point of view.

Some people also distinguish between lockedunits and units that are not locked but have someother method of keeping residents from leaving theunit, e.g., camouflaging the exit doors or using a typeof doorknob that most people with dementia cannotfigure out how to open. Again, although somepeople regard these as distinct alternatives, it isunclear whether the distinction is important from alegal or an ethical point of view.

Units that are not locked but have another methodof keeping residents from leaving the unit are oftenreferred to as secure, secured, protected, or protec-tive units. These terms are also used—sometimes aseuphemisms-for the term locked. This semanticproblem makes it difficult for people to communi-cate clearly about the legal and ethical issues raisedby various methods of keeping residents fromleaving a special care unit.

Some States prohibit locked nursing home unitsor classify them in a different regulatory categorythan unlocked units.16 At least one State official hasargued that locked units constitute physical re-straints in the context of OBRA regulations and thus

require ongoing efforts to move the residents to aless restrictive environment (85).

Families often worry about the safety of a personwith dementia who wanders. Anecdotal evidencesuggests that one thing some families are looking forin a special care unit is assurance that the person willbe safe. They may prefer a locked unit for thisreason. On the other hand, some families may bevery reluctant to place their relative with dementia ina locked unit.

The effect of locked units on the residents isunclear. One study compared the behavior of 22special care unit residents after they encountered alocked vs. an unlocked exit door. The study foundthat the residents were much less agitated after theyencountered the unlocked door (315). Some resi-dents who encountered the unlocked door tested thedoor several times-apparently to be sure it wasunlocked-and then decided not to go out.

Issues With Respect to Admissionand Discharge

Nursing home admission for a nondementedperson raises difficult legal and ethical issues, in partbecause decisions about nursing home admission areseldom autonomous (8,307). The admission of aperson with dementia to a special care unit may raiseeven more difficult issues if the person is incapableof an autonomous decision, the unit is locked, orboth.

Many commentators have debated the similaritiesand differences between the admission of an elderlyperson to a nursing home and the admission of apsychiatric patient to a mental hospital.17 The twosituations are generally perceived as different enoughso that the legal protections that apply to mentalhospital admissions are considered unnecessary orinappropriate for nursing home admissions. In thecase of locked units and individuals who lackdecisionmaking capacity, however, some peoplebelieve additional legal protection is needed. Onepossibility is a requirement for a legally appointedguardian to give consent when a person who lacksdecisionmaking capacity is admitted to a locked

16 AS descfi~ in chapter 5, Colorado’s special care unit regulations apply OI@ to locked tit%17 s=, fore~ple, Cohen, “CaringfortheMentallyIll Elderly Without DeFacto Commitments to Nursing Homes: The Right to the LeastR@rictive

Environment” (90); Moody, “Ethical Dilemmas in Nursing Home Placement” (307); and Spring, “Applying Due Process Safeguards” (420).


unit. Another possibility is a requirement for a civilcommitment in such cases.

These requirements would provide additionalprotection for individuals with dementia and at thesame time create grave obstacles to special care unitadmission. Many families would be unwilling topursue either guardianship or a civil commitment,and some individuals with dementia have no one toinitiate the necessary legal proceedings for them. Ifbetter care is available in a special care unit, legalrequirements intended to protect potential specialcare unit residents could be seen instead as denyingthem access to better care. In fact, if better care isavailable in a special care unit, any decision not toadmit an individual to a special care unit or todischarge an individual from the unit could be seenas denying the individual access to better care. Suchdecisions could be regarded as discriminatory,depending on the basis for the decision.

Some of the difficult legal and ethical issues withregard to discharge involve a conflict between thepresumed right of the unit and its staff to determinewho will be cared for in the unit and the presumedright of residents to remain in the unit if they or theirfamilies so choose. A recent case in a Washington,DC, nursing home illustrates one such conflict. Inthis case, the family of a 91-year-old special careunit resident challenged the facility’s decision todischarge the resident from the unit (204). Thefacility, which had a formal discharge policy,wanted to move the resident to another unit because,in the opinion of the unit staff, she could no longerbenefit from the special care unit. The family arguedthat the resident, who had been in the same room forsix years, might experience ‘‘transfer trauma” as aresult of the move. The hearing examiner ruled thatthe facility could not move the resident even thoughit was clear that the resident did not meet thefacility’s criteria for placement on the unit.

A related issue pertains to special care units thatadmit but later discharge individuals who havebehavioral symptoms which, in the opinion of theunit staff, cannot be managed on the unit. Somepeople believe special care units should be expectedto and should be able to care for individuals withsevere behavioral symptoms. They suggest thatspecial care units that discharge such individualsmay be violating their formal or informal admission

agreement with the residents and the residents’families. On the other hand, the facility is liable forinjuries to other residents that may be caused by aphysically aggressive resident and responsible to theother residents and their families for the overallatmosphere in the unit, which may be negativelyaffected by behaviorally disturbed residents.

Issues With Respect to Consent forResearch Participation

Special care unit researchers report that obtaininginformed consent for research participation byspecial care unit residents is very difficult (79,411,436).Most of the residents are not capable of givinginformed consent, and many residents’ families arereluctant to give consent. As a result, studies thatrequire informed consent are likely to end up withsmall samples that may not be representative of thelarger population of residents. To address thisproblem, some special care unit studies have beendesigned to avoid the need for informed consent. Insuch studies, the researchers review the residents’medical records, observe the residents, and talk tothe unit staff, but they do not interact directly withthe residents because to do so is perceived to requireinformed consent. In contrast, record reviews, resi-dent observation, and staff interviews are not per-ceived to require informed consent.

OTA is not aware of any published analyses of theissue of informed consent for research participationby special care unit residents. Much has been writtenabout this issue, however, as it pertains to nursinghome residents in general and individuals withdementia in any setting. In addition, several re-searchers who are part of the Workgroup on Re-search and Evaluation of Special Care Units arepreparing a paper on ethical issues in special careunit research that includes a discussion of informedconsent for research participation (495).

In the late 1970s and early 1980s, the NationalCommission for the Protection of Human Subjectsin Biomedical and Behavioral Research and thePresidents’ Commission for the Study of EthicalProblems in Medicine and Biomedical and Behav-ioral Research studied and made recommendationsabout informed consent for research participation bynursing home residents (322,350). Other commenta-


tors have also made recommendations on thisissue. 18

All of these recommendations arise from seriousconcerns about the potential exploitation of nursinghome residents as research subjects. They wouldstrictly limit the types of research that could beconducted in nursing homes and the participation ofresidents who are not capable of informed consent.The National Commission for the Protection ofHuman Subjects in Biomedical and BehavioralResearch recommended, for example, that researchinvolving nursing home residents should only beallowed if it is relevant to a condition the subjectssuffer from, i.e., therapeutic research, and only ifappropriate subjects cannot be obtained in any othersetting. Cassel recommended that surrogates shouldbe formally designated to make decisions aboutresearch participation on behalf of residents who arenot capable of informed consent (74).

None of these recommendations has been incor-porated into law, and no special regulations oninformed consent for research participation bynursing home residents are now in effect. OBRA-87gives residents the right to refuse to participate inresearch (463) but does not address the issue ofinformed consent for research participation. Thus,research in nursing homes is governed by the generalFederal law which allows consent for researchparticipation by a legally authorized representativeon behalf of an incompetent person. The term legallyauthorized representative is not defined in theFederal law.

In 1981, the National Institute on Aging spon-sored a conference to explore the legal and ethicalissues with respect to informed consent for researchparticipation by individuals with dementia in anysetting (301). After the conference, a task force drewup guidelines that recommend the use of noninstitu-tionalized subjects whenever possible (302). Federallaw requires institutions that receive Federal re-search funds to have an institutional review board(IRB) to review research proposals involving humansubjects, and the task force’s guidelines cite severalcriteria IRBs could use to evaluate the informedconsent procedures to be used in a given study. Theguidelines point out that the greater the risks posedby a study and the less likely an individual subject

will benefit directly, the more stringent the informedconsent procedures should be. These guidelines arenot part of any official regulations, however.

Researchers generally turn to a nursing homeresident’s family to obtain consent for researchparticipation. It is assumed the family’s decisionwill reflect the wishes and best interests of theresident. The one published study OTA is aware ofthat has addressed families’ decisions about researchparticipation by an elderly relative casts doubt onthat assumption. The researchers asked the familiesof 168 nursing home residents with dementia toconsent to the residents’ participation in a low-riskstudy of urinary catheters (480). About half thefamilies consented. Fifty-five of the families saidthey believed their relative would not consent toparticipate in the study, but17ofthe55(31 percent)consented anyway. Twenty-eight of the families saidthey would not choose to participate in the studythemselves, but 6 of the 28 (20 percent) consentedfor their relative with dementia to participate.

The preliminary findings of a similar study beingconducted by researchers at the University ofChicago are more positive. As of the spring 1992, theresearchers had interviewed 100 noninstitutional-ized individuals with mild to moderate dementia andtheir family caregivers (395). The individuals withdementia were asked whether they would participatein several hypothetical, high- and low-risk medicalstudies. The family caregivers were asked threequestions: whether they would consent for theirrelative with dementia to participate in the studies,whether they thought their relative would consent toparticipate, and whether they would be willing toparticipate themselves. Preliminary findings fromthe study show discrepancies between the responsesof the individuals with dementia and their familycaregivers, but the family caregivers generally havenot volunteered their relative with dementia forhigh-risk studies (395). In fact, the caregivers havebeen less willing than the individuals with dementiato consent to the individuals’ participation in high-risk studies. On the other hand, the family caregivershave been more willing than the individuals withdementia to consent to the individuals’ participationin the low-risk studies.

18 see, for example, Annas Wd GkMM, “Rules for Research in Nursing Homes” (13); Cassel, “Research in Nursing Homes: Ethical Issues” (73);Cassel, “Ethical Issues in the Conduct of Research in Long Term Care” (74); and Dubler, “Lcga.1 Issues in Research on Institutionalized DementedPatients” (122).


Numerous studies that have used hypotheticalscenarios to compare treatment decisions by elderlyindividuals and their families have found discrepan-cies between their responses (119,340,404,449,45 1,523). It has been suggested that family memberswould be more likely to make a treatment decisionthe way their elderly relative would make it if theywere specifically instructed to do so, and thefindings of one study support that suggestion (449).Even when families are asked specifically to makea decision the way their elderly relative would makeit, however, the decisions are not always the same(404,449).

If the necessary descriptive and evaluative re-search is to be conducted in special care units,informed consent procedures must be devised thatwill protect the residents from exploitation and at thesame time allow the use of research methods thatrequire informed consent, e.g., methods that involvedirect interaction with the residents. Some commen-tators have suggested the use of a durable power ofattorney for this purpose (13,302). With a durablepower of attorney, a person who is still capable ofmaking decisions for himself or herself can desig-nate someone to make decisions in the future whenhe or she is no longer capable. The problem with thisapproach is that most special care unit residentsprobably are not capable of executing a valid durablepower of attorney, and many will not have executeda durable power of attorney for research participa-tion at an earlier time when they were capable ofdoing SO.

Some special care units now require individualswith dementia to have a durable power of attorneyfor health care decisions prior to their admission tothe unit. Anecdotal evidence indicates that in somecases, these documents are being executed byindividuals who are not capable of making decisionsfor themselves (156). The same problem could arisewith a durable power of attorney for researchparticipation.

Other approaches that have been proposed are theuse of a nursing home council (13), a multidiscipli-nary nursing home committee (23,74), or an inde-pendent advocacy group (29) to approve and overseenursing home research, including the proceduresthat would be used to obtain informed consent.Certainly if a panel were established to allowwaivers for special care unit research, as suggested

earlier in this chapter, that panel could perform thesefunctions.

Lastly, it must be noted that although most specialcare unit residents probably are not capable of givingvalid informed consent, some are, and they should beasked. Preliminary findings of the ongoing Univer-sity of Chicago study of informed consent forresearch participation by noninstitutionalized indi-viduals with dementia show that many of theseindividuals are able to provide helpful informationabout their values and preferences, even though theyare not capable of giving valid informed consent(395). Some and perhaps many special care unitresidents may also be capable of providing suchinformation.

OTHER ISSUES OF IMPORTANCETO NURSING HOME RESIDENTS

WITH DEMENTIAThree additional issues are important for all

nursing home residents with dementia, includingspecial care unit residents. These three issues arediscussed briefly below.

The Availability of Physicians’ Services

Physicians’ services are essential for all nursinghome residents with dementia. Yet the special careunit literature contains little discussion of the role ofphysicians in special care units. With the exceptionof the Tennessee regulations, the existing Stateregulations for special care units do not mentionphysicians except to require that a physician approvea resident’s admission to the unit and document thereason for the admission. Requirements for ongoingphysician care appear in other sections of theseStates’ nursing home regulations and in the Federalregulations for Medicare and Medicaid certificationof nursing homes. The lack of such requirements inthe special care unit regulations implies, however,that physicians’ role is limited to admission-relatedfictions.

Clearly, the appropriate role of physicians in thecare of nursing home residents with dementia goesfar beyond admission-related functions. One of themost frequent complaints about the care of theseresidents is that acute and chronic illnesses thatexacerbate their cognitive impairments and reducetheir functioning often are not diagnosed or treated.Diagnosis and treatment of these illnesses will


reduce excess disability and improve the residents’quality of life, even if the conditions that cause theirdementia are incurable and progressive. Ongoingphysician involvement is essential to identify andtreat residents’ acute and chronic illnesses.

One stated objective of some special care units isto get away from the ‘‘medical model” of care andadopt a ‘‘social model’ instead. Semantics aside,this objective is unrelated to the role of physicians,who are as essential in a social as a medical modelof care (146). In special care units, as in nursinghomes generally, the physician may be a teammember rather than the team leader (226), but thereis no question about the need for initial and ongoingphysician involvement in the care of residents withdementia in special care units and other nursinghome units.

The Availability of Mental Health Services

Many commentators have noted the lack ofadequate mental health services in nursing homes(58,175,339,393). Although Alzheimer’s diseaseand most of the other diseases that cause dementiagenerally are not considered mental illnesses, theirmanifestations include mental, emotional, and be-havioral symptoms that may respond to behaviormanagement techniques, psychotropic medications,and other mental health treatments. Psychiatrists,psychologists, psychiatric nurses, psychiatric socialworkers, and other mental health professionals withexpertise in the evaluation and treatment of thesesymptoms seldom work in nursing homes.

The lack of adequate mental health services inmost nursing homes is attributable to several factors.One factor is a lack of reimbursement. A secondfactor is the IMD exclusion. As an optional Medicaidbenefit, States may choose to provide Medicaidreimbursement for the care of individuals under age22 or over age 65—but not individuals age 22 to65—in an institution for mental diseases (IMD).Medicaid regulations define an IMD as ‘‘an institu-tion that is primarily engaged in providing diagno-sis, treatment, or care of persons with mentaldiseases, including medical attention, nursing care,and related services’ (460). If a nursing home isclassified as an IMD, it loses Medicaid funding forall its residents age 22 to 65. If the nursing home isin a State that does not provide Medicaid reimburse-ment for care in IMDs, it loses Medicaid funding forall its residents. Because of a fear of being classified

as an IMD, some nursing homes choose not toemploy mental health professionals, not to providemental health services, or both (192,205).

Medicaid regulations cite 10 criteria to be used indetermining whether a facility is an IMD. No singlecriterion is definitive; rather, the criteria are to beused together to determine whether a facility’s‘‘overall character is that of a facility established andmaintained primarily for the care and treatment ofindividuals with mental diseases” (460). Two of thecriteria are troublesome to nursing homes that carefor individuals with dementia:

1)

2)

“The facility specializes in providing psychiatric/psychological care and treatment. This may beascertained through review of patients’ re-cords. It may also be indicated by the fact thatan unusually large proportion of the staff hasspecialized psychiatric/psychological trainingor by the fact that a large proportion of thepatients are receiving psychopharmacologicaldrugs” (460).“More than 50 percent of all the patients in thefacility have mental diseases which requireinpatient treatment according to the patients’medical records” (460).

The second criterion, often referred to as the “50percent rule,” excludes residents with senility ororganic brain syndrome “if the facility is appropri-ately treating the patients by providing only generalnursing care. ” According to the regulations, resi-dents with senility or organic brain syndrome areexcluded because these conditions “are essentiallyuntreatable from a mental health point of view’(460). Residents with senility or organic brainsyndrome are not excluded from the 50 percent rule“if the facility is treating these patients for theeffects of a mental disorder, as opposed to providinggeneral nursing and other medical and remedialcare” (460).

A third factor that may discourage the provisionof mental health services in nursing homes isPreadmission Screening and Annual Resident Re-view (PASARR), a program mandated by OBRA-87that requires States to: 1) screen all nursing homeapplicants and nursing home residents to determinewhether they have mental illness or mental retarda-tion, and 2) evaluate all those who are found to havemental illness or mental retardation to determinewhether they need nursing home care and whetherthey need ‘‘specialized services” for their mental


illness or mental retardation. Mentally ill andmentally retarded nursing home applicants andresidents who are found in a PASARR evaluationnot to need nursing home care or to need “special-ized services” must be placed elsewhere. Mentallyill and mentally retarded nursing home residentswho have been in a nursing home for 30 months ormore can choose to remain in the nursing home evenif they are found not to need nursing home care or toneed “specialized services” (320).

The impact of PASARR on the availability ofmental health services in nursing homes is unclearand probably differs from State to State. Anecdotalevidence suggests that at least in some States,PASAAR has had the same effect as the IMDexclusion—that is, to cause some nursing homes notto employ mental health professionals, not toprovide mental health services, or both, because ofa fear that if the facility employs mental healthprofessionals or provides mental health services, itwill be perceived as caring for mentally ill peopleand therefore lose Medicaid funding.

The Federal regulations for Medicare and Medic-aid certification of nursing homes include provisionsthat would seem to require the involvement ofmental health professionals in assessing residents’care needs and the provision of some mental healthservices. 19 It is unclear how these provisions will beinterpreted and implemented.

The American Association of Retired Persons(AARP) is currently funding a study of barriers tomental health care in nursing homes (260). Thestudy, which will be completed in 1993, will provideinformation about regulations, reimbursement, andother factors that interfere with access to mentalhealth services by all nursing home residents,including residents with dementia.

The Use of Psychotropic Medications

As noted earlier, a large proportion of nursinghome residents receive psychotropic medications,and residents with dementia are more likely thanother residents to receive these medications. Psy-chotropic medications are frequently referred to inthe special care unit literature and elsewhere aschemical restraints or pharmacological restraints.The use of the word restraints in this context implies

that psychotropic medications are an undesirabletreatment option. This implication fits well concep-tually with the growing concern about the overuseand inappropriate use of physical restraints andpsychotropic medications in nursing homes. On theother hand, many commentators have noted thatpsychotropic medications are a valuable treatmentoption for some individuals with dementia(19,28,121,180,277,347,353,367,381,402,412). Forindividuals with depressive or psychotic symptomsor extreme agitation, psychotropic medications maybe the best treatment option. The important consid-eration in these instances is the selection of the rightmedication, in the right dose, for the right indication.

Clearly, psychotropic medications should not beused as a substitute for behavioral or environmentalinterventions that may be as effective or moreeffective and do not have the negative side effectsoften associated with psychotropic medications.Research is needed to determine the indications,dosages, and long-term effects of various psy-chotropic medications. Referring to psychotropicmedications as restraints may create an atmospherein which individuals with dementia will not receivemedications that could significantly improve theirquality of life.

ALTERNATIVES TO SPECIALCARE UNITS

As noted at the beginning of this chapter, theproliferation of special care units is occurring at thesame time as numerous other government andnongovernment initiatives that are likely to improvethe care of nursing home residents with dementia orprovide alternatives to nursing home care for them.This section briefly describes a few of these initia-tives. Each of the initiatives offers an alternate wayof accomplishing one or more of the same objectivesas special care units.

Initiatives To Reduce The Use of PhysicalRestraints for All Nursing Home Residents

OBRA-87 and related legislation require nursinghomes to reduce their use of physical restraints. Priorto and since the implementation of the OBRAregulations, many organizations have developedtraining programs and materials to help nursing

19 see sectio~ 483.20@j(2)(lll) and (vii), 483.20(f), and 483.45(a), Federal Register, Sept. 9, 1991 (463).zo s=, for example, Rader, “The JoyM Road to Restraint- Free Care” (360).


homes reduce the use of physical restraints.20 TheNational Institute on Aging has funded a 3-yearclinical trial on reducing the use of physical re-straints in nursing homes, and the Food and DrugAdministration (FDA) has increased its surveillanceof restraining devices (327).21

In 1989, the Kendal Corp. in Pennsylvaniainitiated “Untie the Elderly, ” a national program tocreate ‘restraint-free’ nursing homes. In December1989, the corporation and the Senate Special Com-mittee on Aging cosponsored a policy-orientedsymposium on reducing the use of physical re-straints in nursing homes. The corporation alsosponsors workshops to help nursing homes reducetheir use of physical restraints and publishes anewsletter that describes the successful efforts ofsome nursing homes to decrease restraint use.

In 1991, the Jewish Home and Hospital for Agedin New York City initiated a three and a half year“Restraint Minimization Project, ” with fundingfrom the Commonwealth Fund. The project isintended to demonstrate ways of reducing restraintuse in nursing homes. It is being implemented in 14nursing homes in 4 States.

Nursing homes often use physical restraintsbecause they are afraid of being sued for fall-relatedinjuries to residents who are not restrained. Yethistorically, there has been a greater risk of facilitiesbeing sued for overuse or misuse of restraints(196,224). By establishing a clear standard of care,OBRA requirements for reduced use of physicalrestraints will increase the legal risks associated withtheir overuse or misuse.

As noted earlier, several studies have found thaton average physical restraints are used far less inspecial care units than in other nursing home units.It is unclear whether this difference will be sustainedas the implementation of OBRA-87 creates pressureon all nursing homes to reduce their use of physicalrestraints. The 481 nursing homes that responded toa 1991 surwey conducted by the American Associa-tion of Homes for the Aging reported that theproportion of their residents who were physicallyrestrained had decreased from an average of 43percent in 1989 to an average of 23 percent in 1991(9). Only 13 percent of the nursing homes reported

having instituted a restraint reduction programbefore 1989, the year the pertinent OBRA regula-tions went into effect.

Dementia Training Programs for NursingHome Staff Members

One of the most frequently cited problems in thecare of nursing home residents with dementia is lackof staff knowledge about dementia. Many organiza-tions and individuals have developed training pro-grams and materials to address this problem. Onevideo training program, ‘‘Managing and Under-standing Behavior Problems in Alzheimer’s Diseaseand Related Disorders,’ was funded by the NationalInstitute on Aging and has 10 training modules, eachfocused on a different behavioral symptom (439).Other programs and materials include the following:

●

●

●

●

●

●

a training manual developed by the St. LouisChapter of the Alzheimer’s Association (39);a training manual and tape series developed bythe Wisconsin Alzheimer’s Information andTraining Center (509);a video training program developed by Com-munity Services Institute, Inc. (102);a training guide and resource manual developedfor the New Jersey Department of Health (471);a video training program developed by ChurchHome and distributed by the American Associ-ation of Homes for the Aging (86); anda training manual written by Lisa Gwyther anddistributed by the Alzheimer’s Association andthe American Health Care Association (165).

These training programs and materials are likelyto improve the care of nursing home residents withdementia generally.

In 1987, the Alzheimer’s Family Center, Inc. ofSan Diego, CA, established a School of DementiaCare which trains and certifies health care profes-sionals to work with individuals with dementia(422). In 1991, the Federal Government providedfunding to the center through the Job Training andPartnership Act to train ‘‘Certified Nursing Assist-ant Alzheimer Care Specialists’ to work withindividuals with dementia in nursing homes, adultday centers, and other settings (324).

zo SW, for example, Rader, “The Joyful Road to Restraint- Free Care” (360).21 ~ J~e 1992, he ~A propoSed a new fie tit ~o~d r~fie ~be~g of physical res~ts. me req~ed label wo~d include directions fOr use

of the restraints, a warning of potential hazards, and the phrase prescription only.

Chapter 1--Overview and Policy Implications ● 51

Specialized Programs for Residents WithDementia in Nonspecialized Nursing

Home Units

Instead of or in addition to a special care unit,some nursing homes have specialized programs forresidents with dementia in nonspecialized units. It isunclear how many nursing homes have such pro-grams. In response to a 1991 survey of all U.S.nursing homes with more than 30 beds, 13 percentof the 1463 nursing homes that said they had aspecial care unit or program for their residents withdementia reported that the program was not in aphysically separate part of the facility (247). Thus,it is likely that at least several hundred nursinghomes have specialized programs.

Some nursing homes have specialized day care oractivity programs.

22 One facility established a‘ wan-

derer’s lounge” where specialized activities areprovided several hours a day for 15 to 20 dementedresidents of the facility’s nonspecialized units (299).

Rovner established an experimental special careprogram for demented residents of nonspecializedunits in one Maryland nursing home (387). Theprogram was intended to duplicate the essentialcomponents of an apparently effective special careunit described earlier in this chapter and in chapter4 (392). The special care program consisted ofweekly visits to each resident by a psychiatrist anda nurse with the purpose of identifying residents’cognitive impairments, treating psychiatric symp-toms, reducing medication side effects, maintainingresidents’ physical health, reducing the use ofphysical restraints, and increasing the residents’participation in activities (387). Five hours ofspecialized activities were provided daily. Thespecial care program is being evaluated. Its impactwill be compared with the impact of the special careunit described earlier to determine their relative costand effectiveness.

Specialized Living Arrangements OutsideNursing Homes

Outside nursing homes, special care units andother specialized living arrangements for peoplewith dementia have been established in residentialcare facilities, assisted living facilities, mentalhospitals, and other settings. Three of the bestknown special care units in the United States are inresidential care facilities:23

. the Alzheimer’s Care Center in Gardiner, ME(303);

. the Corinne Dolan Alzheimer’s Center at HeatherHill in Chardon, OH (317), and

. Wesley Hall in the Chelsea United MethodistRetirement Home in Chelsea, MI (105).

In many discussions about special care units, nodistinction is made between these three units andother model special care units in nursing homes.From a public policy perspective, however, there areimportant differences between special care units inresidential care facilities and special care units innursing homes. Residential care facilities are muchless regulated than nursing homes. The FederalGovernment does not regulate residential care facili-ties.24 States license various types of residential carefacilities (251), but some types of residential carefacilities are not licensed in each State, and thelicensing requirements, where they exist, are lesscomprehensive and far less stringent than thelicensing requirements for nursing homes.25

Since special care units in residential care facili-ties are not subject to the same kinds of regulatoryrequirements as special care units in nursing homes,they are able to implement innovative physicaldesign features, staffing arrangements, and patientcare practices that may be difficult or impossible toimplement in a nursing home. Because of theminimal regulatory requirements, special care units

22 S= for exmple, Clentiel and Fleishell, ‘An Akheimer Day Care Center for Nursing Home Patients” (89); lkmczqk~d Ba*, “Adven~eProgram” (173); Johnson and Chapmaq “Quest for Life” (21 1); and Sawyer and Mendelovitz, “A Management Program for AmbulatoryInstitutionalized Patients With Alzheirner’s Disease and Related Disorders” (400).

23 Thetermresz2ientia/ carefacWies refers to a variety Of hvtig arrangements that provide room and board and some degree of protective supervision.Examples are retirement homes, homes for the aged, group homes, and adult foster homes.

24 me o~y F~w~ role ~ the re~ation of residenti~ Cme f~ilities is through the Keys Amendment to the social security Act. The KeysAmendment requires States to certify to the U.S. Department of Health and Human Semices that all residential care facilities in which a significantnumber of Supplemental Security Lncome (SS1) recipients reside meet appropriate standards. A 1989 GAO report found that the department does littlemore than record the receipt of the certifications and that only four States were submitting the required certifications (453).

25 Reswch Tfi~gle ~ti~te fi NoM c~ol~ is conducfig a Smdy for the us. Dep~ent Of Health ~d H~ Services of State licensingrequirements and other State regulations for residential care facilities. In addition to a 50- State review of existing regulations, the study will comparethe quality of care provided in licensed and urdicensed residential care facilites in 10 States.


in residential care facilities usually cost less toconstruct and operate than special care units innursing homes. As a result, they usually charge lessthan nursing homes.

Despite these advantages, there are serious poten-tial problems with special care units in residentialcare facilities. Anecdotal evidence suggests thatmost of these units are established outside a nursinghome in order to avoid nursing home regulations(273). This may be entirely appropriate if the intentis to avoid regulatory requirements that restrict theuse of physical design or other features the unitoperator believes will benefit individuals with de-mentia; it is clearly inappropriate if the intent is toavoid regulatory requirements that are important forthe safety or well-being of individuals with demen-tia. Many government reports have documentedwidespread abuse, exploitation, and neglect ofelderly and other individuals in residential carefacilities. 26 Given the vulnerability of individualswith dementia, the proliferation of special care unitsin minimally regulated residential care facilitiesraises the prospect of severely deficient care.

Specialized living arrangements for people withdementia are also being developed in assisted livingfacilities. The term assisted living facilities refers toliving arrangements in which a variety of supportiveservices are available to residents who each have aseparate apartment that is lockable and has its ownkitchen (501). Some people consider assisted livingfacilities a type of residential care facility, and otherpeople consider them a separate category of livingarrangements. They are less likely to be regulatedthan other residential care facilities and thereforeprobably present greater potential for deficient care.27

Psychogeriatric units in public and private mentalhospitals often serve elderly individuals with de-mentia as well as elderly individuals with acute andchronic mental illnesses, but some mental hospitalshave units that serve only individuals with dementia.Such units exist, for example, in two Virginia statehospitals (56,252).

Lastly, some organizations have developed or aredeveloping campus-like settings that provide avariety of living arrangements and other specializedservices for individuals with dementia.28 The livingarrangements available in such settings may includeapartments for an individual with dementia and hisor her spouse, residential care or assisted livingunits, and nursing home units.

In addition to programs intended to improve thecare of nursing home residents with dementia orprovide alternate residential care options for them,many services have been developed to assist individ-uals with dementia who are living at home and theircaregivers. These services include adult day care,respite care, specialized hospice programs, and avariety of other in-home and community-basedservices. All these programs and services providealternatives to special care units for some peoplewith dementia. Government policies for special careunits should be considered in relation to the fullrange of care options for these individuals.

CONCLUSION

A large number of nursing home residents in theUnited States have dementia--637,600 to 922,500according to national surveys-and almost all peo-ple with dementia will probably spend some time ina nursing home in the course of their illness. Theseindividuals may receive inappropriate care that willresult in excess disability and severely reducedquality of life.

Special care units of various types have beendeveloped and are proliferating in response to thisproblem. Special care units promise to provide bettercare for individuals with dementia than these indi-viduals would receive in other nursing home units.It is unlikely all nursing home residents withdementia will ever be cared for in special care units,but methods of care developed in special care unitscould eventually be implemented in other nursinghome units as well.

26 See, forexample, “Board and Care Homes in America: A National Tragedy” (455), and ‘Board and Care: LnsufflcientAssurances ThatResidents’Needs are Identified and Met” (453).

27 Gegon has developed special regdat.ions for assisted living facilities. In 1987, the State Medicaid progran ~gan pa@g for cm in designatedassisted living facilities for individuals who are eligible for Medicaid-funded nursing home care (501). One of these facilities serves individuals withdementia (504).

28 s=, for e~ple, Stein Gerontological ceut~, “Pathways: Program Development Plan” (423).

Chapter L-Overview and Policy Implications ● 53

Better methods of care for nursing home residentswith dementia are likely to benefit not only thoseresidents, but also their families, the nursing homestaff members who take care of them, and othernursing home residents who are not demented.Families will benefit because they will be moresatisfied with the care provided for their relativewith dementia and therefore may feel less guiltyabout having placed the individual in a nursing homeand less anxious about his or her well-being. Nursinghome staff members will benefit because the resi-dents are likely to be easier to manage. Nonde-mented nursing home residents will benefit becausethe behavioral and other symptoms of residents withdementia are often disturbing to them; better meth-ods of care are likely to reduce the incidence of thesesymptoms and thus improve the quality of thenondemented residents’ lives.

The number of nursing homes that have a specialcare unit is increasing rapidly. OTA estimates that10 percent of all U.S. nursing homes had a specialcare unit in 1991.

Existing special care units vary greatly in virtuallyall respects. Although experts agree about thetheoretical principles of specialized dementia care,the theoretical principles are implemented differ-ently in different special care units and are notimplemented at all in some special care units, andthere is considerable disagreement about the particu-lar features that are necessary in a special care unit.

Proponents of special care units make strongclaims about their effectiveness, but the availableresearch provides little support for the claims. Onlytwo of the six special care unit studies that used acontrol group found any positive outcomes forspecial care unit residents. Only one of the fourstudies that measured the impact of a special careunit on the unit staff members and only two of thefour studies that evaluated the effect of special careunits on the residents’ families found any positiveoutcomes. None of these studies is definitive byitself, but their combined findings are impressiveand suggest that we do not yet know exactly whatconstitutes effective nursing home care for individu-als with dementia.

Because of the diversity of existing special careunits, their rapid proliferation, and the widespreadperception that some special care units use the wordsspecial care as a marketing tool and actually provideno special services for their residents, there is strong

pressure to regulate special care units. On the otherhand, given the lack of agreement among expertsabout the particular features that are necessary in aspecial care unit and the lack of research-basedevidence of the effectiveness of special care units, itis difficult to determine what regulations should saybeyond general statements about goals and princi-ples and a listing of issues that require specialconsideration in the care of residents with dementia,e.g., staff training, environmental design, security,activity programs, family involvement, and residentrights.

Special care unit regulations are likely to discour-age innovation by suggesting that we already knowwhat constitutes effective care for nursing homeresidents with dementia. Regulations are also likelyto lock in for the future current beliefs about thefeatures that are important in special care units.

OTA concludes that the objective of improvingnursing home care for individuals with dementiawill be better served at present by initiatives todevelop greater knowledge and agreement about theparticular features that are important in the care ofnursing home residents with dementia than by theestablishment of regulations for special care units.Some people argue that we cannot wait for theresults of such initiatives to develop special care unitregulations. It is said that regulations are needed nowto protect individuals with dementia from poor-quality care. In contrast, OTA concludes that OBRA-87 provides a sufficient basis for censuring units thatprovide poor-quality care, without any special regu-lations. It is also said that regulations are needed toprotect individuals with dementia and their familiesfrom nursing homes that fraudulently claim toprovide special care but actually provide nothingspecial for their residents. OTA concludes thatindividuals with dementia and their families can bebetter protected from these nursing homes byinitiatives that would: 1) make available guidelinesthat describe the theoretical concepts and design andother features that are believed to be important inspecial care units, 2) make available informationabout the characteristics of special care units in localjurisdictions, and 3) require nursing homes todisclose to families and others what is special abouttheir special care unit. As noted earlier, theseinitiatives will not protect all potential special careunit residents and their families from nursing homesthat provide no special services in their special careunit. Neither will these individuals be protected by

54 . Special Care Units for People With A[zheimer’s and Other Dementias

regulations that require special care units to incorpo-rate features that have not been shown to beeffective.

The potential of special care units to developbetter methods of care for nursing home residentswith dementia is exciting. That potential cannot berealized without a greater commitment than cur-rently exists to evaluation of the units and their

impact on residents, residents’ families, unit staffmembers, and nondemented nursing home residents.Such evaluation must be pursued with the recogni-tion that some of the features that are currentlybelieved to be essential in special care units may notbe effective and that once effective methods of careare identified, they may not be unique to individualswith dementia.

Chapter 2

Nursing Home ResidentsWith Dementia:

Characteristics and Problems

ContentsPage

INTRODUCTION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 57PREVALENCE OF DEMENTIA IN NURSING HOMES . . . . . . . . . . . . . . . . . . . . . . . . . . . . 57

Dementia-Related Diagnoses of Nursing Home Residents . . . . . . . . . . . . . . . . . . . . . . . . . 58Factors That Could Change the Future Prevalence of Dementia in Nursing Homes . . . 60Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .61

CHARACTERISTICS OF NURSING HOME RESIDENTS WITH DEMENTIA . . . . . . 61Age, Gender, and Race . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 62Impairments in Activities of Daily Living . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 63Symptoms of Depression and Other Psychiatric Conditions . . . . . . . . . . . . . . . . . . . . . . . . 63Behavioral Symptoms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .64Typologies of Nursing Home Residents . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .64Factors That Could Change the Types of Individuals With Dementia in Nursing Homes. 68summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .69

PROBLEMS IN THE CARE PROVIDED FOR NURSING HOME RESIDENTSWITH DEMENTIA . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 70Complaints and Concerns About the Care Provided for Individuals With

Dementia in Many Nursing Homes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 70Use of Psychotropic Medications and Physical Restraints . . . . . . . . . . . . . . . . . . . . . . . . . . 72Negative Consequences for Residents With Dementia, Their Families, Nursing

Home Staff Members, and Nondemented Nursing Home Residents . . . . . . . . . . . . . . . 75Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . . . . . . . . 77

CONCLUSION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 78

TablesTable Page2-1. Distribution of Demented and Nondemented Nursing Home Residents by Age,

Gender, and Race, United States, 1985 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 622-2, Impairments in Activities of Daily Living in Demented and Nondemented Nursing

Home Residents, United States, 1985 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 632-3. Distribution of Psychiatric Symptoms in Demented and Nondemented Nursing

Home Residents, United States, 1987 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 632-4. Characteristics of Six Types of Nursing Home Residents, New York State . . . . . . . . 662-5. Frequently Cited Complaints and Concerns About the Care Provided for Nursing

Home Residents With Dementia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 71

Chapter 2

Nursing Home Residents With Dementia:Characteristics and Problems

INTRODUCTIONAt least half of all nursing home residents have

dementia. Special care units have been developedprimarily in response to perceived problems in thecare they receive in many nursing homes. The unitsare intended to offer better care for these individuals.

This chapter provides information about nursinghome residents with dementia. It begins with areview of the available data on the number andproportion of nursing home residents who havedementia, the proportion who have a diagnosis ofdementia, and the factors that could change thefuture prevalence of dementia in nursing homes. Thesecond section of the chapter discusses the charac-teristics of nursing home residents with dementiaand compares the characteristics of demented andnondemented residents. This comparison is useful in. .thinking about what is different about residents withdementia and what should be special about theircare.

The third section of the chapter discusses prob-lems in the care provided for residents with dementiain many nursing homes and the impact of theproblems on the residents, their families, the nursinghome staff members, and nondemented nursinghome residents. These problems are the primaryreason for the development and proliferation ofspecial care units. They explain to a great degreewhy there is a market for special care units. They arealso the rationale for many of the specific physicaldesign features and patient care practices recom-mended for special care units.

Overuse and inappropriate use of psychotropicmedications and physical restraints are problems forall nursing home residents, but several studiesdiscussed in this chapter show nursing home resi-

dents with dementia are more likely than nonde-mented nursing home residents to receive psy-chotropic medications and to be physically re-strained. While overuse and inappropriate use ofpsychotropic medications and physical restraints aremajor concerns in themselves, they are also per-ceived by special care unit advocates and others asmanifestations of the failure of most nursing homesto use more appropriate methods of care—particularly more appropriate methods of respond-ing to behavioral symptoms. Reduction in the use ofpsychotropic medications and physical restraints bythe substitution of more appropriate methods ofresponding to residents’ behavioral and other symp-toms is a primary objective of many special careunits.

PREVALENCE OF DEMENTIA INNURSING HOMES

The 1985 National Nursing Home Survey con-ducted by the National Center for Health Statisticsidentified 19,100 nursing homes in the United States(467). The 19,100 nursing homes had 1,491,400residents and a total bed capacity of 1,624,200.1

Estimates of the prevalence of dementia innursing homes vary, but data from several sourcesshow that at least half of all nursing home residentshave dementia. Data from the 1985 National Nurs-ing Home Survey, a large-scale survey of a nation-ally representative, stratified random sample of allnursing homes, indicate that 696,800 nursing homeresidents--47 percent of all nursing home residents—had senile dementia or chronic or organic brainsyndrome (469). The terms senile dementia andchronic or organic brain syndrome were used in thepast and are sometimes still used for the clinicalsyndrome referred to in this report and generally as

1 The term nursing home was defined in the 1985 National Nursing Home Survey as a facility that has three or more beds and provides nursing care,personal care (e.g., help with bathing, walking, eating, using the toilet, or dressing) and/or supervision. Another mtional survey, the 1986 Inventory ofImng-RxmCare Places, gathered information about nursing homes and residential carefaciZities, such as homes for the aged, tbat provide personal carebut do not routinely provide nursing care (466). By comparing data from the 1985 National Nursing Home Survey and the 1986 Inventory of Img-lkrmCare Places, the National Center for Health Statistics concluded that 2200 of the facilities identified as nursing homes in the 1985 National Nursing HomeSurvey were actually residential care facilities (467); thus, the 19,100 facilities identified by the 1985 National Nursing Home Survey included 16,900nursing homes with a bed capacity of 1,558,400 and 2200 residential care facilities with a bed capacity of 71,000. Despite this determina tioq the dataon nursing home residents derived from the 1985 National Nursing Home Survey is based on the 1,491,400 residents of the 19,100 facilities, and thisOTA report uses those figures.

–57–

58 ● Special Care Units for People With Alzheirner’s and Other Dementias

dementia. These terms include dementia caused byAlzheimer’s disease.

The figures from the 1985 National NursingHome Survey on the number and proportion ofnursing home residents with senile dementia orchronic or organic brain syndrome were derivedfrom the residents’ diagnoses, as recorded in theirmedical records, and the judgments of members ofthe nursing staff at each nursing home surveyed.Staff members were shown a list of 10 mentalconditions, including senile dementia and chronic ororganic brain syndrome, and asked whether theresidents in the survey sample had any of theconditions (467). Staff members based their answerson their knowledge of the residents and informationin the residents’ medical records, including but notlimited to the residents’ recorded diagnoses.

Other data from the 1985 National Nursing HomeSurvey indicate that 922,500 nursing home residents—62 percent of all nursing home residents—were sodisoriented or memory-impaired that their perform-ance of the activities of daily living, mobility, andother tasks was impaired nearly every day (467).These figures were also derived from interviewswith members of the nursing staff at each nursinghome and reflect the staff members’ judgmentsbased on their knowledge of the residents andinformation in the residents’ medical records.

The 1987 National Medical Expenditure Survey,another large-scale survey conducted by the Agencyfor Health Care Policy and Research, also includeda nationally representative sample of nursing homes.The survey found that 637,600 nursing homeresidents-42 percent of all nursing home residents—had seniledementia or chronic or organic brain syndrome(237). These figures were derived from interviewswith nursing home staff members. The staff mem-bers were instructed to base their responses oninformation in the residents’ medical records, in-cluding but not limited to the residents’ recordeddiagnoses.

As noted in chapter 1, dementia is a clinicalsyndrome characterized by decline of cognitivefunctions, including memory, in an alert individual.To be accurate, a diagnosis of dementia and/or thedisease or condition that is causing the dementiamust be based on a comprehensive patient evalua-tion using accepted diagnostic criteria. Estimates ofthe prevalence of dementia in nursing homes derivedfrom the results of interviews with nursing home

staff members may not be accurate because staffmembers’ judgments about residents’ mental statusare not necessarily based on such an evaluation.

Very few studies have used comprehensive diag-nostic evaluations to determine the prevalence ofdementia in nursing homes, but the results of threestudies that have used such evaluations suggest morethan half of all nursing home residents have clini-cally diagnosable dementia. Based on comprehen-sive medical and psychiatric evaluations of a ran-dom sample of 50 residents of a 180-bed nursinghome in Maryland, Rovner et al. concluded that 78percent of the residents had clinically diagnosabledementia (390). Based on similar evaluations of 65of the 68 residents of a nursing home in Iowa,Chandler and Chandler concluded that 72 percent ofthe residents had clinically diagnosable dementia(82). Lastly, based on similar evaluations of 454individuals admitted to 8 nursing homes in Mary-land between February 1987 and March 1988,Rovner et al. concluded that 67 percent of theindividuals had clinically diagnosable dementia(389). The results of these three studies cannot begeneralized with certainty because of the smallnumber of nursing homes involved, but they suggestthe findings of the 1985 National Nursing HomeSurvey and the 1987 National Medical ExpenditureSurvey underestimate the true prevalence of demen-tia in nursing homes.

Dementia-Related Diagnoses ofNursing Home Residents

Although large proportions of nursing homeresidents were said to have senile dementia orchronic or organic brain syndrome by the nursinghome staff members interviewed for the 1985National Nursing Home Survey and the 1987National Medical Expenditure Survey and evenlarger proportions were found to have clinicallydiagnosable dementia in the three studies just cited,relatively few nursing home residents have a diagno-sis of dementia in their medical records. In fact, oneof the frequent complaints about the care of nursinghome residents with dementia is that their dementiais not carefully or accurately diagnosed and some-times is not diagnosed at all (17,82,370,389,390,433).

Data from the 1985 National Nursing HomeSurvey show that at the time of the survey, 16percent of all residents had a recorded primarydiagnosis of dementia or of a disease or condition

Chapter 2-Nursing Home Residents With Dementia: Characteristics and Problems ● 59

that causes dementia. The 16 percent included 3percent who had a primary diagnosis of Alzheimer’sdisease or another specified or unspecified degener-ation of the brain (ICD-9-CM codes 331.0, 331.2,and 331.9)2; 3 percent who had a primary diagnosisof senile dementia or another organic psychoticcondition (ICD-9-CM codes 290-294), 9 percentwho had a primary diagnosis of organic brainsyndrome (ICD-9-CM code 310); and 1 percent whohad a primary diagnosis of senility without psycho-sis (ICD-9-CM code 797) (467).

Of the nursing home residents who were said bymembers of the nursing staff at each facility to haveeither senile dementia or chronic or organic brainsyndrome, about one-third had a recorded primarydiagnosis of any mental disorder, including 7percent who had a primary diagnosis of seniledementia or another organic psychotic condition(ICD-9-CM codes 290-294) and 19 percent who hada primary diagnosis of organic brain syndrome(ICD-9-CM code 310) (467). Of the residents whowere said by members of the nursing staff to bedisoriented or memory-impaired, 4 percent had aprimary diagnosis of senile dementia or anotherorganic psychotic condition, and 12 percent had aprimary diagnosis of organic brain syndrome.

Nursing home residents generally have severaldiagnoses in their medical records. Considering allthe diagnoses listed in residents’ medical records,the 1985 National Nursing Home Survey found 23percent of the residents had any diagnosis ofdementia or of a disease or condition that causesdementia (189). As noted earlier, the 1985 surveyfound 47 percent of all residents had dementia. Thusfewer than half of the residents with dementia had arecorded diagnosis of dementia or a diagnosis of adisease or condition that causes dementia. More-over, most of those with a recorded diagnosis ofdementia had a general diagnosis, such as chronic ororganic brain syndrome. These general diagnoseswere widely used in the past but have been largelyreplaced in most settings by more specific diagnosesthat identify the cause of an individual’s dementia,e.g., Alzheimer’s disease or multi-infarct dementia.

There are many possible reasons why a nursinghome resident with dementia may not have arecorded diagnosis of dementia or a diagnosis of adisease or condition that causes dementia. One

possible reason is that the physician who determinesthe person’s diagnoses is not aware of the person’sdementia. A second possible reason is that althoughthe physician is aware of the person’s dementia, thephysician does not think the dementia is as importantas the person’s other medical conditions and there-fore does not document it in the person’s medicalrecord. A third possible reason is that the physiciandoes not feel competent to diagnose the dementia. Afourth reason is that in some States, Medicaidpolicies restrict eligibility for Medicaid-funded nurs-ing home care for persons with dementia (83). As aresult, physicians who want to help their patientswith dementia obtain Medicaid funding for nursinghome care may choose not to document the dementiain the patients’ medical records. Lastly, manynursing home administrators and staff are reluctantto admit someone they believe will be difficult tomanage, and they tend to regard people withdementia as difficult to manage (170,454,520). Forthis reason, physicians who want to help theirpatients with dementia to be admitted to a nursinghome may not document the dementia in thepatients’ medical records.

The proportion of nursing home residents withdementia who have a recorded diagnosis of dementiaor a diagnosis of a disease or condition that causesdementia is likely to increase in the future and mayhave already increased since the 1985 NationalNursing Home Survey. Findings from the 1987National Medical Expenditure Survey suggest theproportion of nursing home residents who had sucha diagnosis in their medical records was slightlyhigher in 1987 than it was in 1985 (236).

One reason for the expected increase in theproportion of nursing home residents who have arecorded diagnosis of dementia is the growingawareness among physicians and others of Alz-heimer’s disease and other diseases that causedementia. In addition, the resident assessment proc-ess mandated by the nursing home reform provisionsof the Omnibus Budget Reconciliation Act of 1987(OBRA-87) requires evaluation of a resident’scognitive status. The Minimum Data Set, the resi-dent assessment instrument developed for the imple-mentation of OBRA-87, includes six questionsabout cognitive status on its first page (see fig. 5-1in ch. 5). By calling attention to residents’ cognitive

2 ICD.9.CM ~O&=~ we &PO~tic ~~d~- from tie Intermtional cla~~ifi”cation of Diseases, $lth Revision, clinical Mod@”cation, published b 1980.

328-405 - 92 - 3 QL 3


status, this assessment instrument increases thelikelihood dementia will be diagnosed.

Preadmission Screening and Annual ResidentReview (PASARR), another mandated componentof OBRA-87, also increases the likelihood thatdementia will be diagnosed. OBRA-87 requiresStates to have a PASARR program that 1) screens allnursing home applicants and nursing home residentsto determine whether they have mental illness ormental retardation, and 2) evaluates all those foundto have mental illness or mental retardation todetermine whether they need nursing home care andwhether they need “active treatment” for theirmental illness or mental retardation. Mentally ill andmentally retarded nursing home applicants andresidents who are found in a PASARR evaluationnot to need nursing home care or to need “activetreatment” must be discharged. (Mentally ill andmentally retarded nursing home residents who havebeen in a nursing home for 30 months or more canchoose to remain in the nursing home even if they arefound not to need nursing home care or to need‘‘active treatment. ’ ‘)3

In the original OBRA-87 language, a nursinghome applicant or resident with a primary orsecondary diagnosis of a mental disorder as definedin the American Psychiatric Association’s Diagnos-tic and Statistical Manual of Mental Disorders, 3rdedition (DSM III) was considered to have mentalillness and therefore to be subject to a PASARRevaluation. According to DSM III, dementia is amental disorder, but an amendment to the originalOBRA-87 language exempted individuals with aprimary diagnosis of dementia, including Alz-heimer’s disease or a related disorder, from thePASARR evaluation process. OBRA-90 extendedthat exemption to individuals who have any diagno-sis of dementia as long as they do not have a primarydiagnosis of a serious mental illness (320).

Since a PASARR evaluation can result in adetermin ation that an applicant or resident cannot beadmitted to or cannot remain in a nursing home,PASARR creates an incentive for physicians whowant to have their patients admitted to or remain ina nursing home to give the patients a diagnosis ofdementia in order to exempt them from the evalua-tion. The current lack of a definitive physical marker

for Alzheimer’s disease, the most common cause ofdementia, means that disproving such a diagnosiswould be difficult. OTA is not aware of any data thatshow an increase in the proportion of nursing homeresidents who have a diagnosis of dementia since theimplementation of PASARR in January 1989, butanecdotal evidence suggests such an increase hasoccurred, at least in some States.

Factors That Could Change the FuturePrevalence of Dementia in Nursing Homes

At least three factors could change the prevalenceof dementia in nursing homes in the future. Onefactor is the availability of alternate residential caresettings for people with dementia, e.g. adult fosterhomes and board and care and assisted livingfacilities. These types of settings are proliferating insome parts of the country and may substitute fornursing homes for some individuals with dementia.

A second factor that could change the prevalenceof dementia in nursing homes is the availability ofsupportive services for individuals with dementiawho live at home, e.g., adult day services andin-home and overnight respite services. Such serv-ices may prevent or postpone nursing home place-ment for some individuals.

A third factor that could affect the future preva-lence of dementia in nursing homes is changes inMedicare or Medicaid eligibility, coverage, or reim-bursement policies that either encourage or discour-age nursing home care for persons with dementia. Asnoted earlier, Medicaid policies in some Statesrestrict eligibility for Medicaid-funded nursing homecare for people with dementia. Any changes inMedicaid policies in those or other States thatresulted in more or less restrictive eligibility policiesfor persons with dementia would affect the numberof residents with dementia in nursing homes.

With respect to reimbursement policies, flat ratesystems, which reimburse nursing homes at the samerate for all residents, generally create a financialincentive for nursing homes to admit individualsthey regard as relatively easy and thus inexpensiveto care for and to deny admission to individuals theyregard as relatively difficult and thus more expen-sive to care for (51,416). Since many nursing homeadministrators and staff members regard individuals

3 me ofibu~ B@~t Re~~~fiatio~ At of 1990 (OBRA.90) c~ged me te~ active t~eatme~t to specialized se~-ces for PASARR p~SeS.

OBR4-90 also changed the term mental illness to serious mental iZlness for PASARR purposes (320).

Chapter 2--Nursing Home Residents With Dementia: Characteristics and Problems ● 61

with dementia as relatively difficult to care for, theymay be reluctant to admit these individuals under aflat rate reimbursement system.

As of 1990, 19 States were using case-mixreimbursement systems for Medicaid-funded nurs-ing home care (51), and Congress has mandateddevelopment of a case-mix reimbursement systemfor Medicare-funded nursing home care. The pur-pose of case-mix reimbursement systems is torecognize explicitly differences among nursing homeresidents in the resources required and therefore thecost of their care and to adjust the level ofreimbursement to reflect those differences (142,416).To the extent that the level of reimbursement forresidents with dementia in a given case-mix systemcorresponds to nursing home administrators’ per-ception of the relative difficulty and cost of caringfor these residents vs. other types of residents, theadministrators are likely to be willing to admitindividuals with dementia.4 Anecdotal evidencesuggests the level of reimbursement for individualswith dementia vs. other individuals in existingcase-mix systems does not correspond to adminis-trators’ perceptions of the relative difficulty and costof their care and in effect discourages admission ofindividuals with dementia.

Summary

A very large number of nursing home residentshave dementia-637,000 to 922,500 individualsaccording to national surveys. Not all of theseindividuals have a diagnosis of dementia in theirmedical records, however. In 1985, at least one-halfof all nursing home residents with dementia did nothave a diagnosis of dementia in their medicalrecords. Moreover, most of the residents who had adiagnosis of dementia had a general diagnosis, suchas organic brain syndrome, rather than a specificdiagnosis, such as Alzheimer’s disease. These find-ings support the complaint of many special care unitadvocates and others that dementia in nursing homeresidents frequently is not carefully or accuratelydiagnosed and sometimes is not diagnosed at all.

The proportion of nursing home residents withdementia that has a diagnosis of dementia in theirmedical records is probably higher now than it was

in 1985. For reasons discussed earlier, that propor-tion is likely to continue to increase in the future.

The true proportion of nursing home residentswith dementia could increase or decrease, dependingon several factors, e.g., the availability of appropri-ate care in alternate settings and Medicare andMedicaid policies that encourage or discouragenursing home care for persons with dementia.

CHARACTERISTICS OFNURSING HOME RESIDENTS

WITH DEMENTIAThe 1985 National Nursing Home Survey, the

1987 National Medical Expenditure Survey, andseveral smaller studies provide information aboutvarious characteristics of nursing home residents.OTA has used this information to compare thecharacteristics of nursing home residents with de-mentia and nondemented nursing home residents. Inthis section the two groups of residents are comparedwith respect to age, gender, race, impairments inactivities of daily living, and psychiatric and behav-ioral symptoms. Two topologies of nursing homeresidents are discussed.

Information about the characteristics of dementedand nondemented nursing home residents is usefuli n ”thinking about what should be special aboutnursing home care for individuals with dementia.The data presented in this section show that residentswith dementia generally are older than nondementedresidents. They are also more likely to have impair-ments in activities of daily living and psychiatric andbehavioral symptoms. There is considerable over-lap, however, between demented and nondementedresidents in the distribution of these characteristics.

Information about the characteristics of nursinghome residents with dementia is also useful inthinking about whether there are certain types ofindividuals with dementia who might be moreappropriate than other types for special care units.Probably the most important information for thispurpose is information about their coexisting medi-cal conditions and physical impairments. To OTA’sknowledge, that information is not available fromresearch based on a nationally representative sampleof nursing home residents. The 1985 National

AExis~g case-mix reimbmsement systems generaUy do not use dementia or a resident’s cognitive status as variables to defhe case mix. Otiervariables, such as disorientatio~ need for supervision and speci.ilc behavioral symptoms, which maybe proxies for dementia, are used to define casemix in some reimbursement systems (142).


Nursing Home Survey provides information aboutthe primary and other diagnoses of all nursing homeresidents. For residents with dementia, diagnosesrelated to their mental status have been extractedfrom the survey data, but their other diagnoses havenot been extracted. According to an official of theNational Center for Health Statistics, that informa-tion would be of questionable validity because of thelarge number of diagnostic categories and therelatively small number of individuals in many ofthe categories (189). One of the topologies ofnursing home residents discussed later in this sectionincorporates information about residents’ coexistingmedical conditions and physical impairments thatwas derived from data on residents of New Yorknursing homes.s

Age, Gender, and Race

Table 2-1 presents data from the 1985 NationalNursing Home Survey on the age, gender, and raceof demented and nondemented nursing home resi-dents. For the purpose of the comparisons in thissection, demented nursing home residents are resi-dents who had a diagnosis of dementia in theirmedical records or were said by members of thenursing home staff to have senile dementia orchronic or organic brain syndrome. Nondementednursing home residents are residents who did nothave a diagnosis of dementia in their medicalrecords and were not said by members of the nursinghome staff to have senile dementia or chronic ororganic brain syndrome.

According to the survey data, demented nursinghome residents were, on average, older than nonde-mented nursing home residents. As shown in table2-1,48 percent of residents with dementia were overage 85, compared with 33 percent of the nonde-mented residents.

The proportion of residents with dementia in-creased with age, from 20 percent of residents underage 65, to 38 percent of those age 65 to 74,49 percentof those age 75 to 84, and 56 percent of those overage 85 (data not shown) (469). Conversely, theproportion of nondemented residents decreased withage.

Three-quarters of nursing home residents withdementia were female (see table 2-l). A preponder-ance of female residents among all residents withdementia is to be expected since female nursinghome residents greatly outnumber male residents.The survey data indicate, however, that femalenursing home residents were more likely than maleresidents to have dementia (48 percent vs. 40percent, respectively) (data not shown) (469).

The proportion of nursing home residents withdementia did not differ by race. As shown in table2-1, the proportion of demented nursing home

Table 2-l—Distribution of Demented andNondemented Nursing Home Residents by

Age, Gender, and Race, United States, 1985

All Demented Nondementedresidents residents residents

(N=1,491,400) (N =696,800) (N= 794,600)

AgeUnder 65.. . . 127065-74 . . . . . . . 1475-84 . . . . . . . 3485+. . . . . . . . . 40

GenderMale. . . . . . . . 28Female. . . . . . 72

RaceWhite. . . . . . . 92Black. . . . . . . 7Other. . . . . . . 1

5%123648

2575

9271

18%163333

3268

9271

SOURCE: Adapted from U.S, Department of Health and Human Serviees,“Mental Illness in Nursing Homes: United States, 1985,” PublicHealth Serviee, National Center for Health Statistics, DHHSPub. No. (PHS) 89-1758, Hyattsville, MD, Februafy 1991.

5 me 1985 National Nursing Home SWey provides information about the primary reason for residents’ admission to a nWS@ home as report~

by their next of kin. According to these next-of-kin reports, the primary reasons for admission for 32 percent of all residents overage 65 who had mentaldisorders were Alzheirner’s disease, confusio~ forgetfulness, senility, or other emotional, mental, or nervous conditions. The primary reasons foradmission for the remaining residents over age 65 who had mental disorders were stroke (10 percent), atherosclerosis and other heart and circulatoryconditions (10 percent), hip or other fractures (7 percent), arthritis or another bone, muscle, or joint condition (4 percent), cancer (1 percent), centralnervous system diseases or injuries (2 percent), diseases of the digestive or endocrine systems (3 percent), 10SS of vision or hearing (2 percent), respiratoryconditions (2 percent), Parkinson’s disease (2 percent), dizziness, fainting, or falls (1 percent), genitourinmy diseases (1 percent), old age or generaldebilitation (3 percent), or other or no main reason (21 percent) (469). Although interesting in itself, this information is of little value in determiningthe coexisting medical conditions and physical impairments of residents with dementia for two reasons. Firs~ the category of persons with mentaZdisorders includes residents with schizophrenia, other psychoses, depressive and anxiety disorders, mental retardation, and alcohol and drug abuse, sswell as persons with dementia. In addition, since the residents’ next of kin were asked about only one condition-the condition they considered theP-reason for the residen~’ a~ssion to the nwsing home, heir responses provide no information about the medical conditions and physiea.1impairments of residents admitted because of mental conditions and no information about secondary medical conditions and physical impairments ofresidents admitted because of physical conditions.

Chapter 2--Nursing Home Residents With Dementia: Characteristics and Problems . 63

Table 2-2—lmpairments in Activities of Daily Livingin Demented and Nondemented Nursing Home


Table 2-3—Distribution of Psychiatric Symptomsin Demented and Nondemented Nursing Home



(N= 1,491,400) (N =696,800) (N= 794,600)


(N=1,518,400) (N =643,600) (N =856,200)

Needs help with:Bathing. . . . . . . . . 89% 96% 82%Dressing. . . . . . . 75 87 65Using the toilet. . 61 74 49Transferring. . . . . 60 70 51Continence. . . . . 52 69 37Eating. . . . . . . . . . 39 54 27

SOURCE: Adapted from U.S. Department of Health and Human Services,“Mental Illness in Nursing Homes: United States, 1985,” PublicHealth Service, National Center for Health Statistics, DHHSPub. No. (PHS) 89-1758, Hyattsville, MD, February 1991.

residents who were white, black, or ‘‘other” corre-sponds exactly to the proportion of nondementednursing home residents in each category.

Impairments in Activities of Daily Living

Table 2-2 presents data from the 1985 NationalNursing Home Survey on impairments in activitiesof daily living among demented and nondementednursing home residents. The data show nursinghome residents with dementia were considerablymore likely than nondemented nursing home resi-dents to need assistance with each of the activities ofdaily living. For example, 96 percent of residentswith dementia needed assistance with bathing,compared with 82 percent of nondemented resi-dents. Sixty-nine percent of residents with dementianeeded assistance to remain continent, comparedwith 37 percent of nondemented residents.

Symptoms of Depression and OtherPsychiatric Conditions

Data from the 1987 National Medical ExpenditureSurvey indicate that symptoms of depression andother psychiatric conditions are common amongnursing home residents with dementia. The surveydata show that 70 percent of nursing home residentswith dementia had depressive symptoms, includingworry, apprehension, drowsiness, withdrawal, impa-tience, and suspiciousness (see table 2-3). Sixty-one

Depressivesymptoms. . . . . . 64% 70% 61%

Psychoticsymptoms. . . . . . 30 36 26

Behavioral problems0 problems. . . . . 53 41 631+. . . . . . . . . . . . . 47 59 401-4. . . . . . . . . . . . 43 53 375-10. . . . . . . . . . . 4 6 2

SOURCE: Adapted from U.S. Department of Health and Human Services,published and unpublished datafromthe 1987National MedicalExpenditure Survey, Institutional Population Component, Cur-rent Residents, Agency for Health Care Pol”ky and Research,Rockville, MD, 1991.

percent of the nondemented residents had depressivesymptoms (464).6

The 1987 National Medical Expenditure Surveyfound 36 percent of nursing home residents withdementia had psychotic symptoms, such as delu-sions and hallucinations (see table 2-3). Twenty-sixpercent of nondemented residents had such symp-toms.

Although these figures show that many nursinghome residents with dementia have depressive andpsychotic symptoms, it should be noted that not allnursing home residents with dementia have thesesymptoms. Seventy percent of the residents withdementia had depressive symptoms according to thesurvey data, but 30 percent of the residents withdementia did not have such symptoms. Likewise, 36percent of the residents with dementia had psychoticsymptoms, and 64 percent did not.

It is also clear from the survey data that depressiveand psychotic symptoms are not unique to residentswith dementia. Sixty-one percent of the nonde-mented residents had depressive symptoms, and 26percent had psychotic symptoms. In fact, datatabulated for OTA by the Agency for Health CarePolicy and Research show that 53 percent of allnursing home residents who had depressive symp-

S The reported prevalen~ of depression and depressive symptoms among nursing home residents varies greatly depending on the S~@ s~Ple ~dthe procedures by which the condition and its symptoms are identified. Moreover, clinicians disagree about what constitutes depression and depressivesymptoms in persons with dementia. A study of 227 residents of one Pennsylvania nursing home found that 87 of the 166 residents with dementia (52percent) and 69 of the 111 cognitively normal residents (62 percent) had major or minor depression based on self reports and observer ratings (342).Another study of 454 residents of 8 Maryland nursing homes found that 29 of the 306 residents with dementia (9 percent) and 110 of the 148 cognitivelynormal residents (74 percent) had major depression or depressive symptoms (388,389).


toms and 49 percent of all residents who hadpsychotic symptoms were not demented (464).

Behavioral Symptoms

Both the 1985 National Nursing Home Surveyand the 1987 National Medical Expenditure Surveyfound behavioral symptoms were more common innursing home residents with dementia than in othernursing home residents. The 1985 survey collectedinformation about six behavioral symptoms (disrobing/exposing oneself, screaming, being physically abu-sive to self or others, stealing, getting lost orwandering into unacceptable places, and inability toavoid simple dangers) (468). Fifty-eight percent ofresidents with dementia exhibited one or more ofthese symptoms, whereas only 24 percent of nonde-mented residents exhibited one or more of thesymptoms.

The 1987 National Medical Expenditure Surveycollected information about 10 behavioral symp-toms (wandering, physically hurting others, physi-cally hurting oneself, dressing inappropriately, cry-ing for long periods, hoarding, getting upset, notavoiding dangerous things, stealing, and inappropri-ate sexual behavior) (237). Fifty-nine percent ofnursing home residents with dementia exhibited oneor more of these symptoms, compared with 40percent of nondemented residents (see table 2-3).

Wandering is probably the most frequently citedbehavioral symptom of nursing home residents.Data from the 1987 National Medical ExpenditureSurvey and a previous National Nursing HomeSurvey conducted in 1977 show 11 percent of allnursing home residents wander (237,465). At leastthree smaller studies have shown nursing homeresidents with dementia are more likely than othernursing home residents to wander (98,1 16,417). Onestudy of 402 residents of a 520-bed nursing home inRockville, MD, found, for example, that 47 percentof the 216 demented residents wandered, comparedwith 31 percent of the 186 nondemented residents(98).

Sundowning is another frequently cited behav-ioral symptom of nursing home residents. The termsundowning refers to an observed increase in agi-tated and confused behaviors that occurs in someindividuals in the late afternoon. A study of 89randomly selected residents of one 180-bed nursinghome in Washington, DC, found 15 percent of the 59residents with dementia exhibited this symptom,

compared with 7 percent of the 30 nondementedresidents (132).

Excessive or disruptive noisemaking, includingscreaming, moaning, and repetitive verbalizations,is a third frequently cited behavioral symptom ofnursing home residents. At least two studies haveshown demented residents are more likely thannondemented residents to exhibit this symptom(72,97).

Although these figures indicate nursing homeresidents with dementia are more likely than othernursing home residents to exhibit behavioral symp-toms, it is clear not all nursing home residents withdementia exhibit such symptoms. As shown in table2-3, the 1987 National Medical Expenditure Surveyfound 41 percent of nursing home residents withdementia did not exhibit any of the measuredsymptoms (464). Likewise, the 1985 National Nurs-ing Home Survey found 42 percent of nursing homeresidents with dementia did not exhibit any of themeasured symptoms (468).

It is also clear from the survey data that behavioralsymptoms are not unique to residents with dementia.The 1987 National Medical Expenditure Surveyfound 40 percent of nondemented nursing homeresidents exhibited one or more behavioral symp-toms (see table 2-3). Moreover, data from the twonational surveys show 35 to 47 percent of nursinghome residents who exhibited one or more behav-ioral symptoms were not demented (464,468).

The results of a study of a random sample of 1139residents of 42 New York nursing homes also showbehavioral symptoms are not unique to residentswith dementia. The study found 23 percent of theresidents exhibited serious behavioral symptoms,including dangerous, physically aggressive, andverbally noisy or abusive behaviors (520). Two-thirds of the residents who exhibited serious behav-ioral symptoms had dementia. By implication, it isclear that one-third of the residents who exhibitedserious behavioral symptoms did not have dementia.

Topologies of Nursing Home Residents

Several topologies have been proposed to de-scribe different types of nursing home residents. Onetypology delineates five general types of residents(339). The five types are based on differences in theprimary reason for the individuals’ admission to a


nursing home and their expected lengths of stay. Thefive types are:

1.

2.

3.

4.

5.

individuals who are terminally ill and willremain in the facility for 6 months or less;individuals who require short-term rehabilita-tion or treatment for subacute illness and willremain in the facility for 6 months or less;individuals who are primarily physically im-paired and will remain in the facility for longerthan 6 months;individuals who are primarily cognitively im-paired and will remain in the facility for longerthan 6 months; andindividuals who have significant cognitive andphysical impairments and will remain in thefacility for longer than 6 months (339).

In this typology, individuals with dementia areincluded in two of the groups-long-stay residentswho are primarily cognitively impaired and long-stay residents who are both cognitively and physi-cally impaired.

A more complicated typology that was developedwith the use of a statistical grouping technique calledgrade of membership (GOM) and data on thecharacteristics of 3427 residents of New Yorknursing homes delineates 6 types of nursing homeresidents (283). The six types are:

1.

2.

3.

4.

limited impaired residents who usually have aprimary diagnosis of heart disease, diabetes,arthritis, or a cognitive or mental disorder butare relatively healthy, have few impairments inactivities of daily living or sensory impair-ments, and require relatively little nursingcare;oldest-old, deteriorating residents who areover age 85, have multiple medical problems,including cancer, heart disease, arthritis,stroke, diabetes, and digestive, neurological,and pulmonary problems, but no dementia, andrequire more nursing care than any of the othertypes except type 6;acute and rehabilitative residents who areacutely ill, usually have been admitted from ahospital for rehabilitation following hip frac-ture, stroke, or another condition, generally donot have dementia, and are usually dischargedhome after a short stay;behavioral problem residents who usuallyhave a primarv diagnosis of a mental illness

and exhibit psychiatric and behavioral symp-toms;

5. dementia residents who are relatively old andusually have stroke, dementia, and/or psychi-atric symptoms, as well as impairments inactivities of daily living; and

6. severely impaired residents who are relativelyyoung, often terminally ill, and have medicalproblems, such as stroke, renal failure, andrespiratory and neurological diseases, andsevere impairments in activities of daily liv-ing; they have the longest stays and usuallyrequire nursing services, such as wound care,sterile dressings, and turning and positioning(283).

Table 2-4 presents data on the resident character-istics associated with each of the six types. Thefigures in table 2-4 represent the probability that anindividual who is exactly like that type has theparticular characteristic. Individuals with a diagno-sis of Alzheimer’s disease or senile dementia areincluded in four types—1,4, 5, and 6 (283). Thesefour types differ greatly in their other diagnoses,physical impairments, and care needs.

The GOM technique is intended to model thecomplex clinical reality of disease and functionalstatus in elderly people (283). Although the typo-logy just described is derived from data on thecharacteristics of residents of New York nursinghomes, experience in using the GOM technique withdata on other nursing home residents indicates thesame six types emerge (282). Thus, the six typesprobably describe real types of nursing homeresidents, and the four types that include individualswith dementia probably represent more accuratelythan the simpler typology described earlier theclinical reality of dementia in nursing homes.

The GOM typology is useful in thinking aboutwhich individuals with dementia might be appropri-ately cared for in special care units vs. nonspecial-ized units or other settings. For example, in type6--severely impaired residents, there is a 20 percentprobability that an individual of this type has aprimary diagnosis of Alzheimer’s disease or seniledementia and therefore might be an appropriatecandidate for placement in a special care unit. On theother hand, all individuals of this type have impair-ments in activities of daily living-100 percentrequire assistance in transferring, eating, dressing,bathing, toileting, and hygiene, and 100 percent are


Table 2-4—Characteristics of Six Types of Nursing Home Residents, New York State

Type of nursing home residents

Limited Oldest-old Acute and Behavioral Severelyimpaired deteriorating rehabilitative problem Dementia impaired

Variable Frequency (1) (2) (3) (4) (5) (6)

1. Primary diagnosisCancer. . . . . . . . . . . . . .Heart disease. . . . . . . . .Stroke. . . . . . . . . . . . . . .Diabetes. . . . . . . . . . . . .Arthritis. . . . . . . . . . . . . .Renal problems.. . . . . .Digestive problems. . . . .Hip fracture. . . . . . . . . . .Liver and gall bladder

problems. . . . . . . . . . .Alzheimer’s disease and

senile dementia. . . . .Other neurological

problems. . . . . . . . . . .Chronic respiratory

problems. . . . . . . . . . .Other respiratory

problems. . . . . . . . . . .Infectious disease. . . . .Other endocrine

problems. . . . . . . . . . .Metabolic disorder. . . . .Blood disorder. . . . . . . .Mental disorder. . . . . . .Atherosclerosis. . . . . . . .Other circulatory

problems. . . . . . . . . . .Other. . . . . . . . . . . . . . . .

Associated conditions

1.4317.7910.784.055.940.640.701.92

0.12

15.29

10.30

1.64

0.610.34

0.180.340.49

18.402.56

1.225.27

3.3350.6016.3712.2622.03

6.397.564.61

1.02

8.17

16.49

5.16

1.936.39

75.72

2.662.316.24

17.5412.282.835.46

5.25

0.6635.56

0.007.778.560.000.000.00

1.7962.83

0.008.57

14.390.001.520.00

3.019.48

18.561.10

11.101.742.279.52

0.00

0.00

24.64

0.00

0.810.00

0.000.000.000.000.00

6.0511.72

2.3649.9517.6717.4312.280.000.006.28

0.00

0.00

0.00

0.00

1.380.00

100.00

2.202.110.000.000.000.000.00

8.49

1.390.000.009.470.000.000.000.00

0.00

22.68

0.00

0.00

0.000.00

1.460.000.00

44.5420.46

0.000.00

0.000.00

19.460.000.000.060.000.00

0.34

42.50

0.00

0.00

0.000.70

0.000.000.00

36.940.00

0.000.00

0.0062.0313.435.20

19.110.000,007.21

0,00

0.00

0.00

2,61

3,330.00

100.00

0.000.000.000.000.000.007.83

0.00

1.320.00

20.720.000.001.440.000.00

0.00

20.07

27.32

0.00

1.170.00

0.001.550.00

17.830.00

0.008.59

0.0021.2322.95

7.460.00

29.950.006.73

0.00

10.01

0.00

0.00

3.1029.95

100.00

0.000.710.000.000.000.003.82

0.00

0.42 0.00

12.07 0.00

0.00 0.00

6.79 3.30

0.000.00

1.371.43

0.000.200.00

22.200.00

0.000.003.050.000.00

0.005.78

0.001.75

2.3.4.5.6.7.8.9.

10.

11.

12.

13.

14,

15,16,17,

18,19.20.21.22.23.24.

4.3747.136.075.96

19.360.004.552.54

14.32100.0028.9625.80

100.000.00

55.160.00

4.9332.8313.4927.914.250.000.000.00

0.00

61.62

0.00

6.82

0.000.00

100.00

0.006.360.00

100.000.000.000.00

0.00

Cancer. . . . . . . . . . . . .Heart disease. . . . . . .Stroke. . . . . . . . . . . . . .Diabetes. . . . . . . . . . . .Arthritis. . . . . . . . . . . . .Renal problems. . . . . .Digestive problems. . .Hip fracture. . . . . . . . .Liver and gall

bladder disease. . . .Alzheimer’s disease

and senile dementia.Other neurological

problems. . . . . . . . . .Chronic respiratory

problems... . . . . . . .Other respiratory

problems... . . . . . . .Urological problems. .Infectious disease. . . .Other endocrine

problems. . . . . . . . . .Metabolic disorder. . .Blood disorder. . . . . . .Mental disorder. . . . . .Eye problems.. . . . . .Ear problems. . . . . . . .Atherosclerosis. . . . . .Other circulatory

1.34 7.00

0.00 0.00

0.00 100.00

7.59 23.40

1.570.00

100.00

0.000.000.00

2.633.420.000.000.000.000.00

15.705.00

51.340.00

100.0031.9427.35

1.55 29.66problems. . . . . . . . . .


Table 2-4—Characteristics of Six Types of Nursing Home Residents, New York State--Continued




25. Skin problems. . . . . . .26. Fractured extremities.27. Comatose. . . . . . . . . .28. Terminally ill. . . . . . . .29. Alcohol abuse. . . . . . .30. Drug abuse. . . . . . . . .

Limitations31. Vision:

No loss. . . . . . . . . . . .Moderate loss. . . . . .Severe loss. . . . . . . .

32. Hearing:No loss. . . . . . . . . . . . .Moderate loss. . . . . . .Severe loss. . . . . . . . .

33. Verbal expression:No difficulty. . . . . . . . .With difficulty. . . . . . . .Totally impaired. . . . . .

34. Reception:No difficulty . . . . . . . . .With difficulty. . . . . . . .Totally impaired. . . . . .

35. Diet:Regular. . . . . . . . . . . .Other. . . . . . . . . . . . . .

36. Decubiti:None. . . . . . . . . . . . . . .Single. . . . . . . . . . . . .Multiple. . . . . . . . . . . . .

37. Discoloration. . . . . . . .38. Edema. . . . . . . . . . . . .39. Weight loss. . . . . . . . .40. Severe pain. . . . . . . . .41. Contractures. . . . . . . .42. Dyspnea. . . . . . . . . . . .

43. Mobility:No impairment. . . . . . .With help. . . . . . . . . . .Wheelchairfast. . . . . .Chairfast. . . . . . . . . . .Bedfast. . . . . . . . . . . . .

44. Transfer:No impairment. . . . . .With help. . . . . . . . . . .Bedfast. . . . . . . . . . . .

45. Eating:No loss. . . . . . . . . . . . .With supervision. . . .Totally impaired. . . . . .

46. Dressing:No impairment. . . . . . .With supervision. . . .Totally impaired. . . . . .

2.601.811.201.323.170.26

74.5319.036.44

80.2215.264.52

66.4323.72

9.85

57.5034.36

8.14

19.5680.44

88.799.571.64

6.0215.1613.618.03

22.494.71

21.6524.3738.1114.74

1.14

29.5140.1130.39

22.1255.8522.03

13.2236.6850.10

0.000.000.000.004.770.00

100.000.000.00

100.000.000.00

100.000.000.00

100.000.000.00

34.8065.20

100.000.000.00

0.000.000.004.190.000.00

100.000.000.000.000.00

100.000.000.00

100.000.000.00

62.7237.28

0.00

14.270.000.000.000.000.00

0.0063.0536.95

0.0077.1522.85

100.000.000.00

47.2652.74

0.00

0.00100.00

100.000.000.00

59.6693.4853.3025.41

0.0046.50

0.000.00

100.000.000.00

0.00100.00

0.00

0.00100.00

0.00

0.00100.00

0.00

0.003.620.001.790.000.00

100.000.000.00

100.000.000.00

91.118.890.00

100.000.000.00

28.3571.65

93.736.270.00

0.0013.38

9.8620.44

0.000.00

0.0062.3637.64

0.000.00

0.00100.00

0.00

0.00100.00

0.00

0.00100.00

0.00

2.140.000.000.00

26.643.14

100.000.000.00

100.000.000.00

83.5316.650.00

0.00100.00

0.00

18.8181.19

100.000.000.00

0.0021.3342.09

9.770.000.00

100.000.000.000.000.00

100.000.000.00

0.00100.00

0.00

100.000.000.00

0.000.000.000.000.000.00

91.928.080.00

100.000.000.00

51.1348.87

0.00

40.1859.820.00

26.8373.17

100.000.000.00

0.000.004.390.000.000.00

0.0038.4361.570.000.00

0.00100.00

0.00

0.00100.00

0.00

0.000.00

100.00

4.465.606.374.950.000.00

54.3945.61

0.00

100.000.000.00

0.0048.3151.69

0.0038.8961.11

0.1999.81

52.3339,88

7.79

0.004.90

10.140.00

97.900.00

0.000.00

36.1559.27

4.58

0.000.00

100.00

0.000.00

100.00

0.000.00

100.00


Table 2-4—Characteristics of Six Types of Nursing Home Residents, New York State--Continued




47. Bathing:No impairment. . . . . . .With assistance. . . . . .Totally impaired. . . . . .

48. Toileting:No impairment. . . . . .With help. . . . . . . . . . .Totally impaired. . . . .

49. Bladder control:Continent . . . . . . . . . . .

50.

51.

52.

53.54.

55.

56.57.58.59.60.61.62.

Incontinent. . . . . . . . . .Indwelling. . . . . . . . . . .External. . . . . . . . . . . .

Bowel:Continent. . . . . . . . . . .Incontinent. . . . . . . . . .Colostomy. . . . . . . . . .

Personal hygiene:No impairment. . . . . . .With supervision. . . .With assistance. . . . . .

Learning:No impairment. . . . . . .With difficulty. . . . . . . .Totally impaired. . . . . .

Patient wanders. . . . .Patient verbally

abusive. . . . . . . . . . .Patient physically

aggressive. . . . . . . .Severe depression. . .Hallucinations. . . . . . .Paranoia. . . . . . . . . . .Patient withdrawn. . . .Delusion. . . . . . . . . . . .Hoarding. . . . . . . . . . .Manipulative. . . . . . . .

2.2542.8854.87

27.3724.2548.38

39.3151.59

7.271.84

46.5753.38

1.05

12.3225.8461.84

32.8049.0918.11

9.48

34.90

16.957.366.137.65

32.114.415.66

11.97

10.1289.880.00

100.000.000.00

100.000.000.000.00

99.110.000.89

54.5545.56

0.00

91.948.060.00

0.00

0.00

0.000.000.000.000.000.007.250.00

0.00100.00

0.00

0.00100.00

0.00

0.00100.00

0.000.00

0.000.00

100.00

0.00100.00

0.00

0.00100.00

0.00

0.00

0.00

0.000.000.000.00

86.140.000.000.00

0.00100.00

0.00

0.00100.00

0.00

100.000.000.000.00

99.170.000.83

0.00100.00

0.00

84.4615.540.00

0.00

0.00

0.000.000.000.000.000.007.81

36.44

100.000.000.00

100.000.000.00

0.00100.00

0.000.00

0.000.00

100.00

0.000.00

100.00

0.00100.00

0.00

94.33

100.00

100.00100.00100,00100.00100.0082.8339.7778.97

0.000.00

100.00

0.00100.00

0.00

0.00100.00

0.000.00

0.00100.00

0.00

0.000.00

100.00

0.0093.406.60

17.90

0.00

0.000.000.000.000.000.000.000.00

0.000.00

100.00

0.000.00

100.00

0.0058.9232.788.29

0.00100.00

0.00

0.000,00

100.00

0.000.00

100.00

0.00

0.00

0.000.000.000.00

47.160.000.000.00

SOURCE: K.G. Manton, J.C. Vertrees, and M.A. Woodbury, “Functionally and Medically Defined Subgroups of Nursing Home Populations,” Hea/th CareFinancing Review 12(1):50-52, 1990.

incontinent; they also require extensive nursing needed by individuals in type 6, and exhibit behav-services, such as wound care, sterile dressings, and ioral symptoms. Thus they might be appropriateturning and positioning. For these reasons, they candidates for placement in a special care unit.might be more appropriately cared for in a nonspe-cialized nursing home unit. In contrast, in type Factors That Could Change the Types of4--behavioral problem residents, there is a 23 Individuals With Dementiapercent probability that an individual of this type has in Nursing Homesa primary diagnosis of Alzheimer’s disease or seniledementia and a 62 percent probability that such an The same factors that could change the prevalenceindividual has any diagnosis of Alzheimer’s disease of dementia in nursing homes could also change theor senile dementia. Individuals in this type have less types of individuals with dementia in nursingsevere impairments in activities of daily living, homes. These factors include availability of alter-generally do not require the kinds of nursing services nate residential care settings for persons with


dementia, availability of supportive services forpersons with dementia who live at home, andMedicare and Medicaid eligibility, coverage, andreimbursement policies that encourage or discour-age nursing home care for certain types of individu-als with dementia. Greater availability of appropri-ate services for persons with dementia in non-nursing-home settings is likely to reduce the number andproportion of nursing home residents with dementiawho are in the middle stages of their illness and arerelatively physically healthy except for their demen-tia and, conversely, increase the number and propor-tion who are in the late stages of dementia and havenumerous medical conditions and physical impair-ments in addition to dementia. The wider use ofcase-mix systems to determine the level of Medicareand Medicaid reimbursement for nursing home careis also likely to differentially increase the proportionof nursing home residents with dementia who havenumerous medical conditions and physical impair-ments in addition to dementia.

Another factor that could change the types ofindividuals with dementia in nursing homes ischanges in hospital discharge practices. Followingthe implementation of the Medicare prospectivepayment system in 1983, the average length ofhospital stays for Medicare beneficiaries decreased,and the average severity of illness increased amongindividuals who were admitted to nursing homesfrom hospitals (262,396,430). Future changes inhospital discharge practices that resulted in shorteraverage length of hospital stays could result infurther increases in severity of illness among bothdemented and nondemented nursing home residents.

Summary

Findings of two national surveys based on repre-sentative samples of nursing home residents showresidents with dementia are more likely than nonde-mented residents to have impairments in activities ofdaily living and depressive, psychotic, and behav-ioral symptoms. At the same time, survey data showthat some nursing home residents with dementia arenot impaired in each of the activities of daily livingabout which information was obtained, that signifi-cant proportions of nursing home residents withdementia do not have depressive or psychoticsymptoms (30 percent and 64 percent, respectively),and that more than 40 percent of nursing homeresidents with dementia do not have behavioralsymptoms (464). It is also clear from the survey data

that although nondemented residents are less likelythan demented residents to have impairments inactivities of daily living and depressive, psychotic,and behavioral symptoms, significant proportions ofnondemented residents have each of these character-istics.

The literature on nursing home care for personswith dementia often implies that virtually all nursinghome residents with dementia have behavioralsymptoms and that behavioral symptoms in nursinghomes are almost always symptoms of dementedresidents. The survey data contradict both assump-tions.

Parenthetically, it is interesting to note thatsundowning behavior, which is mentioned often inthe literature on nursing home care for persons withdementia, was exhibited by only a small proportionof residents with dementia (15 percent) in the onestudy OTA is aware of that measured the incidenceof this behavior (132). Similar findings for severalother behavioral symptoms are noted in chapter 4.

Behavioral symptoms are often difficult for nurs-ing home staff members to manage. As discussed inthe following section of this chapter, one of the mostfrequent complaints about the care provided forresidents with dementia by most nursing homesconcerns inappropriate staff responses to residents’behavioral symptoms. As a result, one objective ofmany special care units is to implement moreeffective methods of responding to these symptoms.Even if all nursing home residents with dementiawere in special care units, however, a large propor-tion of all nursing home residents with behavioralsymptoms (35 to 47 percent according to nationalsurvey data) would still be in nonspecialized units.Likewise, if special care units were designated toserve only residents with behavioral symptoms-anoption that has been suggested—the units would notserve all individuals with dementia who neednursing home care, because more than 40 percent ofnursing home residents with dementia do not exhibitbehavioral symptoms.

These findings point out the diversity of nursinghome residents with dementia. The typology ofnursing home residents based on the GOM tech-nique identifies four distinct types of nursing homeresidents with dementia-limited impaired resi-dents, behavioral problem residents, dementia resi-dents, and severely impaired residents. Special careunits may be more appropriate for some of these


types than others. As discussed in chapter 3, currentresidents of special care units are somewhat lessphysically impaired than residents with dementia innonspecialized nursing home units. Special careunits may be shown to be more effective for theseless physically impaired residents than for individu-als with dementia who have many medical condi-tions and physical impairments in addition todementia.

PROBLEMS IN THE CAREPROVIDED FOR NURSING HOME

RESIDENTS WITH DEMENTIAProblems in the care provided for individuals with

dementia in many nursing homes are the primaryreason for the development and proliferation ofspecial care units. This section discusses theseproblems and their impact on residents with demen-tia, their families, nursing home staff members whotake care of them, and nondemented nursing homeresidents.

Complaints and Concerns About the CareProvided for Individuals With Dementia in

Many Nursing Homes

The literature on nursing home care for individu-als with dementia contains numerous complaintsand concerns about the care provided for theseindividuals in many nursing homes. Table 2-5 liststhe most frequently cited complaints and concerns.(An identical list appears in table 1-1 in ch. 1.) Thislist was derived from OTA’s review of 30 articles,reports, and books on nursing home care for personswith dementia (48,55,59,67,107,1 15,125,162,163,165,170,171,182,191,241,243,263,274,339,346,352,354,359,364,370,385,386,393,414,446). The inclu-sion of items in table 2-5 does not imply that datanecessarily exist to prove the items are true butrather that the items are aspects of what is believedto be wrong with the care provided for people withdementia in most nursing homes and therefore whatshould be done differently in special care units.

Some of the complaints and concerns listed intable 2-5 apply primarily to nursing home residentswith dementia, e.g., the complaint that dementiaoften is not carefully or accurately diagnosed andsometimes is not diagnosed at all. Other complaintsand concerns listed in table 2-5 would apply equallyto nondemented residents if the explicit references todementia were omitted. To determine which of the

frequently cited complaints and concerns aboutnursing home care for individuals with dementia arethe same as the problems in nursing home care for allresidents, OTA compared the complaints and con-cerns listed in table 2-5 with the problems identifiedby the Institute of Medicine’s Committee on Nurs-ing Home Regulation in its landmark 1986 reportImproving the Quality of Care in Nursing Homes(318). The Institute of Medicine’s report identifiedmany problems with the care provided by somenursing homes:

●

●

●

●

●

●

●

●

●

●

●

●

●

●

The

insufficient attention to residents’ rights;physical abuse and neglect;inadequate medical and nursing care, includingfailure to identify and treat acute and chronicdiseases and conditions;lack of well-trained, motivated, and adequatelysupervised staff;insufficient attention to residents’ quality oflife;lack of choices for residents, e.g., choices aboutwhen and what they eat, whom they room with,and when they go to bed and get up;failure to notify residents about and involvethem in decisions about their care and aboutaspects of the operation of the facility thataffect their care and the quality of their lives;failure to notify residents’ families about andinvolve them in decisions about the residents’care;lack of psychiatric treatment for residents whoneed it;overuse and misuse of psychotropic drugs;overuse and misuse of physical restraints;failure to create a home-like environment;lack of adequate and comfortable lighting,sound levels, and room temperature; andlack of interaction between the nursing homeand the community (318).

Institute of Medicine’s report emphasized thatthese problems exist in some but not all nursinghomes and that some nursing homes provide high-quality care (318).

Clearly there are similarities between the prob-lems cited in the Institute of Medicine’s report andthe concerns and complaints listed in table 2-5.There are also some notable differences—particularly in the emphasis placed on certain typesof problems. One of these differences is the greateremphasis in the literature on nursing home care for

Chapter 2-Nursing Home Residents With Dementia: Characteristics and Problems . 71

Table 2-5—Frequently Cited Complaints and Concerns About the Care Provided forNursing Home Residents With Dementia

• Dementia in nursing home residents often is not carefully or accurately diagnosed and sometimes is notdiagnosed at all.

• Acute and chronic illesses, depression, and sensory impairments that can exacerbate cognitive impairmentin an individual with dementia frequently are not diagnosed or treated.

. There is a pervasive sense of nihilism about nursing home residents with dementia; that is, a general feelingamong nursing home administrators and staff that nothing can be done for these residents.

• Nursing home staff members frequently are not knowledgeable about dementia or effective methods ofcaring for residents with dementia. They generally are not aware of effective methods of responding tobehavioral symptoms in residents with dementia.

• Psychotropic medications are used inappropriately for residents with dementia, particularly to controlbehavioral symptoms.

. Physical restraints are used inappropriately for residents with dementia, particularly to control behavioralsymptoms.

• The basic needs of residents with dementia, e.g., hunger, thirst, and pain relief, sometimes are not metbecause the individuals cannot identify or communicate their needs, and nursing home staff members maynot anticipate the needs.

• The level of stimulation and noise in many nursing homes is confusing for residents with dementia.

● Nursing homes generally do not provide activities that are appropriate for residents with dementia• Nursing homes generally do not provide enough exercise and physical movement to meet the needs of

residents with dementia.● Nursing homes do not provide enough continuity in staff and daily routines to meet the needs of residents

with dementia.● Nursing home staff members do not have enough time or flexibility to respond to the individual needs of

residents with dementia.

● Nursing home staff members encourage dependency in residents with dementia by performing personal carefunctions, such as bathing and dressing, for them instead of allowing and assisting the residents to performthese functions themselves.

• The physical environment of most nursing homes is too “institutional’ and not “home-like” enough forresidents with dementia.

. Most nursing homes do not provide cues to help residents find their way.

. Most nursing homes do not provide appropriate space for residents to wander.• Most nursing homes do not make use of design features that could support residents’ independent

functioning.● The needs of families of residents with dementia are not met in many nursing homes.

SOURCE OKleG Of ‘Jk@nology Assessment 1992.

individuals with dementia on aspects of the physical independent functioning in cognitively impairedenvironment of most nursing homes that are per- individuals.ceived to be inappropriate for these individuals. A second difference between the problems citedThese aspects include the lack of cues to help in the Institute of Medicine’s report and complaintsresidents find their way, the lack of appropriate and concerns listed in table 2-5 is the greaterspace for residents to wander, and the failure to emphasis in the literature on nursing home care forincorporate other design features that could support persons with dementia on behavioral symptoms and


staff responses to these symptoms that are perceivedto be inappropriate for the residents. As discussed inthe previous section, nursing home residents withdementia are more likely than other residents toexhibit behavioral symptoms. Critics of the careprovided for individuals with dementia by mostnursing homes contend that nursing home staffmembers often use inappropriate methods—particularly psychotropic medications and physicalrestraints-to manage residents’ behavioral symp-toms and that staff members are not aware of other,more effective methods of responding to thesesymptoms (109,171,191,277,359).

Both the Institute of Medicine’s 1986 report andthe literature on nursing home care for persons withdementia cite the lack of adequately trained staff inmany nursing homes. The Institute of Medicine’sreport focuses on lack of training in general, whereasthe literature on nursing home care for persons withdementia focuses specifically on lack of trainingabout the care of residents with dementia. Trainingabout the care of nursing home residents withdementia is clearly a subset of training about the careof all kinds of nursing home residents, but onerationale for establishing special care units is that itis easier to develop and maintain an adequatelytrained staff when the focus of training is dementiaand the care of residents with dementia than whenthe focus of training is much broader (263,270,354).

Both the Institute of Medicine’s report and theliterature on nursing home care for persons withdementia also cite inappropriate use of psychotropicmedications and physical restraints. As discussed inthe following section, these two problems affect allnursing home residents to some degree, but availabledata indicate psychotropic medications and physicalrestraints are used more for nursing home residentswith dementia than for other residents.

Use of Psychotropic Medicationsand Physical Restraints

Psychotropic medications and physical restraintsare used extensively in nursing homes and are morelikely to be used for nursing home residents withdementia than for nondemented residents. As notedat the beginning of this chapter, overuse andinappropriate use of psychotropic medications andphysical restraints are major problems in them-selves. They are also perceived by special care unitadvocates and others as manifestations of the failure

of many nursing homes to use more appropriatemethods of responding to residents’ behavioralsymptoms.

Use of Psychotropic Medications

Various studies have shown that 35 to 65 percentof all nursing home residents are prescribed and/orreceive at least one psychotropic medication, includ-ing antipsychotic, antidepressant, antianxiety, andsedative/hypnotic medications (18,19,52,366,414,425, 429,433,461). According to these studies, 9 to26 percent of residents are prescribed and/or receivemore than one such medication.

Nursing home residents with dementia are morelikely than other nursing home residents to receivepsychotropic medications. A study of medicationuse by residents of 12 nursing homes in Massachu-setts found that during a one-month period, 72percent of residents with a diagnosis of Alzheimer’sdisease used at least one psychotropic medicationfor 5 or more days, compared with 53 percent of allresidents (19).

A study of a representative sample of 3352residents of nursing homes in Rhode Island alsofound the use of psychotropic medications wassignificantly correlated with cognitive status (425).Among residents with no cognitive impairment oronly mild cognitive impairment, 49 percent receivedat least one psychotropic medication, compared with50 percent of those with moderate cognitive impair-ment and 57 percent of those with severe cognitiveimpairment. Cognitive impairment was not the onlyresident characteristic significantly correlated withreceipt of psychotropic medications. Sixty-six per-cent of residents who exhibited behavioral symp-toms (e.g., noisiness, abusiveness, wandering, dis-robing) received one or more psychotropic medica-tions, compared with 48 percent of those who did notexhibit such symptoms.

Considering only antipsychotic medications, astudy of 484 residents admitted to 8 Marylandnursing homes between February 1987 and March1988 found the use of these medications wassignificantly higher in residents with dementia thannondemented residents (389). Forty-four percent ofthe 123 residents with dementia complicated bydepression, delusions, or delirium and 34 percent ofthe 183 residents with dementia uncomplicated byany of these factors received antipsychotic medica-tions. In contrast, 24 percent of the 58 residents with


a mental illness and only 7 percent of the 90residents with neither dementia nor a mental illnessreceived antipsychotic medications.

Considering antipsychotic and antianxiety medi-cations, a study of 760 residents of 7 Wisconsinnursing homes found the use of these medicationswas significantly higher in residents with dementiathan in nondemented residents (429). Thirty-threepercent of the 274 residents with dementia uncom-plicated by psychotic symptoms or other mentalillness received one or both of these types ofmedications over a one-month period, comparedwith 15 percent of residents with neither dementianor mental illness.

Interestingly, a study of 408 residents of a508-bed nursing home in Rockville, MD, found thatresidents who were agitated and demented weresignificantly more likely than residents who wereagitated but not demented to receive antipsychoticmedications (28). In contrast, residents who wereagitated but not demented were more likely toreceive antianxiety medications.

Psychotropic medications are often used to con-trol behavioral symptoms in nursing home residentswith dementia, but many of the frequently usedmedications have not been demonstrated to beeffective for this purpose (18,19,180,208,277,285,339,381,389,397,406,414,425). Moreover, someof the most frequently used medications can causeconfusion, disorientation, and oversedation in eld-erly people, thus tending to exacerbate cognitivedeficits in elderly individuals with dementia. Propo-nents of specialized nursing home care for personswith dementia advocate the use of other approachesto manage behavioral symptoms and argue thestaff’s first response to these symptoms should notbe psychotropic medications. On the other hand, it isclear psychotropic medications are effective intreating certain symptoms in some persons withdementia (121,180,277,347).

One intent of the nursing home reform provisionsof OBRA-87 was to limit the use of psychotropicmedications in nursing homes. OBRA-87 mandatesa bill of rights for nursing home residents, whichincludes the right ‘‘to be free from any physical orchemical restraints imposed for the purposes ofdiscipline or convenience, and not required to treatthe resident’s medical symptoms.” In 1991, theHealth Care Financing Administration issued draft

interpretative guidelines for surveyors, includingspecific guidelines on the use of psychotropicmedications. The guidelines list specific medica-tions and conditions for which they can and cannotbe used. A recent retrospective review of antipsy-chotic medication use from 1976 to 1985 for morethan 8000 residents of 60 nursing homes in 8 Statesfound half of the use of these medications would nothave been allowed under the new guidelines (150).

Use of Physical Restraints

Like psychotropic medications, physical restraintsare also used extensively in nursing homes. Physicalrestraints include any externally applied deviceintended to restrict an individual’s free movement(383,446). Examples of physical restraints are Poseyvests that are put on the individual and then tied tothe individual’s bed or chair; geriatric chairs thathave a tray table which the individual cannotremove; bed rails; lap belts; chest, waist, leg, andwrist restraints; and mittens that the individualcannot remove. Since physical restraints are definedin large part by the purposes for which they are used,devices such as wheelchair brakes and sheets mayalso be physical restraints if they are intended toinhibit a person’s free movement (182,300).

A 1989 literature review identified four studiesthat reported on the prevalence of restraint use inU.S. nursing homes (133). The studies show that 25to 41 percent of residents were restrained at the timethe studies were conducted. A recently publishedstudy of restraint use in 12 nursing homes inConnecticut found that 1042 of the 1756 residents ofthese facilities (59 percent) were restrained at thebeginning of the study (446). A sample of 397residents who had not been restrained at the begin-ning of the study was followed for a year, duringwhich time 122 of the 397 residents were restrained.Thus a total of 1164 of the original 1756 residents(66 percent) were restrained at some time during theyear.

Restraint use varies from one nursing home toanother. The study of 454 residents of 8 Marylandnursing homes between February 1987 and March1988 found that in the 3 facilities with the highestuse of restraints, an average of 73 percent of theresidents were restrained at some time during theyear, compared with an average of 55 percent of theresidents in the 3 facilities with the lowest use ofrestraints (61).


Some commentators contend that once restraintsare used for a nursing home resident, they generallyare used on a regular basis (300), but the study justcited of restraint use in 12 Connecticut nursinghomes found use was more varied. Of the 122residents who were restrained for the first timeduring the study year, 34 percent were restrained fora single period of time that lasted less than 30 days;34 percent were restrained during more than oneperiod of time but had long periods when they werenot restrained; and 32 percent were restrained on aregular basis, defined as at least 20 days each month(446).

Nursing home residents with dementia are morelikely than nondemented nursing home residents tobe physically restrained (133,389,446). The studyjust cited of restraint use in 12 Connecticut nursinghomes found that during the study year, 51 percentof the residents who were disoriented were re-strained, compared with only 17 percent of thosewho were not disoriented (446).

The study of 8 Maryland nursing homes con-ducted between February 1987 and March 1988 alsofound that the residents with dementia were signifi-cantly more likely than nondemented residents to bephysically restrained (389). Forty-eight percent ofthe 123 residents with dementia complicated bydepression, delusions, or delirium and 41 percent ofthe 183 residents with dementia uncomplicated byany of these factors were physically restrained. Incontrast, 27 percent of the 58 residents with a mentalillness and 13 percent of the 90 residents with neitherdementia nor a mental illness were physicallyrestrained. Residents with dementia who also hadsevere impairments in activities of daily living weremuch more likely to be physically restrained thanresidents with dementia who did not have suchimpairments (61).

A variety of reasons are given for the use ofphysical restraints for nursing home residents: 1) toprotect residents from injury due to falling orwandering; 2) to prevent residents from injuringother residents or staff members; 3) to preventresidents from interfering with their own treatment,for example, by removing feeding tubes or openingwounds; 4) to prevent behavioral problems; 5) tosatisfy some residents’ families who request thatrestraints be used, primarily to protect their relativefrom falling; 6) to protect the nursing home from therisk of being sued for fall-related injuries; and 7) to

provide “postural support” or maintain “bodyalignment,’ for example, by keeping a resident fromslipping down in his or her chair (133,182,212,300,311,446). In addition, physical restraints are some-times used when a nursing home has insufficientstaff to adequately supervise residents.

Sometimes physical restraints are also used topunish residents (133,31 1). A telephone survey of arandom sample of 577 nurses and nurse aides from31 nursing homes in New Hampshire found exces-sive use of restraints was the most frequentlymentioned type of resident abuse (348). One-fifth ofthe nurses and nurse aides said they had observedthis type of abuse, and of those who had observed it,two-thirds said they had observed it frequently. Sixpercent of the nurses and nurse aides reported theyhad used restraints to punish residents.

Many negative effects of physical restraints havebeen identified. These negative effects includephysiological effects of immobility, such as inconti-nence, contractures, and loss of bone and musclemass; increased anxiety and agitation; aggravatedbehavioral symptoms, such as screaming, hitting,and biting; decreased social behavior and decreasedsocial relationships; demoralization, loss of self--esteem, and emotional withdrawal; and injuries anddeath due to improper use of the restraints or theresidents’ attempts to escape from the restraints(3O,l33,l39,l82,2O8,3OO,3O5,383,427,446,49O,498).

A study of 24 agitated nursing home residentswith dementia found the use of restraints did notreduce and may have increased their agitation (490).Over the 3-month period of the study, the researchersobserved that residents exhibited significantly moreagitated behaviors when they were restrained thanwhen they were not. Seven of the 24 residents wererestrained more than 50 percent of the day and night.Five of these seven residents exhibited physicallyaggressive behaviors, such as biting and hitting,while they were restrained. Fifteen of the 24residents fell at least once during the study period,sometimes while they were restrained. It is notpossible to determine from the study data whetherthey would have fallen more often if they had notbeen restrained.

As noted earlier, one of the primary objectives ofmany special care units is to reduce the use ofpsychotropic medications and physical restraints.Results of studies reviewed in the next chaptersuggest that special care units have been successful


in reducing the use of physical restraints but use ofpsychotropic medications remains high.

Negative Consequences for Residents WithDementia, Their Families, Nursing HomeStaff Members, and Nondemented Nursing

Home Residents

Problems in the care provided for nursing homeresidents with dementia have many negative conse-quences for residents, their families, nursing homestaff members who take care of them, and nonde-mented residents. Inappropriate nursing home caretends to exacerbate the effects of an individual’sdementing disease or condition. In many instances,however, it is difficult to distinguish effects of anindividual’s dementing disease or condition andeffects of inappropriate care.

Negative Consequences for Residents WithDementia

Problems in the care provided for nursing homeresidents with dementia have many negative conse-quences for the residents. These consequences canbe categorized in terms of excess disability, reducedquality of life, reduced physical safety, and reducedaccess to nursing home care. As noted in chapter 1,excess disability is the discrepancy that exists whena person’s fictional impairment is greater than thatwarranted by the person’s disease or condition(47,219). The concept of excess disability implies anindividual with dementia has certain impairments infunctioning caused directly by his or her dementingdisease or condition and other impairments infunctioning caused by other factors. One example ofexcess disability is the increased confusion caused insome persons with dementia by psychotropic medi-cations intended to control their behavior.

Inappropriate nursing home care can cause excessdisability in terms of an individual’s cognitivefunctioning, mood, self-care abilities, and behavior.Excess disability in cognitive functioning may becaused, for example, by untreated acute or chronicillness, depression, sensory impairments, or pain, aswell as by excessive environmental noise andstimulation and psychotropic medications. Excessdisability in behavior maybe caused by inappropri-ate staff responses to the resident’s physical oremotional needs or behavioral symptoms, excessiveenvironmental noise or stimulation, insufficientactivities and exercise, use of physical restraints, and

other factors. Extreme behavioral responses, re-ferred to as catastrophic reactions, in which anindividual with dementia becomes acutely agitated,angry, or combative, are often attributed to thesefactors rather than to an individual’s dementingdisease or condition (47,274,353,371,385). Althoughit is difficult in practice to differentiate functionalimpairments that are or are not warranted by anindividual’s disease or condition, some of thecharacteristics of nursing home residents with de-mentia cited earlier (e.g., the high proportions ofresidents with impairments in activities of dailyliving and behavioral symptoms) may be due asmuch to problems in the care they receive in thenursing home as to their dementing disease orcondition (107,1 15,125,165,171,263,353,385,386).

Quality of life is difficult to evaluate in generaland particularly difficult to evaluate in individualswith dementia. Poor quality of life is attributed tonursing home residents with dementia when they areobserved to be agitated, restless, depressed, crying,screaming, calling out repetitively, and/or extremelywithdrawn. In some instances, these reactions arecaused by an individual’s dementing disease orcondition, and in other instances they are caused byinappropriate care (38,107,1 15,125,263).

In addition to excess disability and reducedquality of life, problems in the care provided fornursing home residents with dementia occasionallyhave drastic consequences in terms of the residents’physical safety. Individuals with dementia some-times wander away from nursing homes if they arenot well supervised and the facility is not locked orotherwise secured. Some of these individuals diebefore they are found (188).

A final consequence of problems in the careprovided for nursing home residents with dementiais reduced access to nursing home care. Nursinghome administrators and staff often regard peoplewith dementia as difficult to manage because of theirbehavioral symptoms and may be reluctant to admitthem for this reason. As a result, some individualswith dementia who need nursing home care may notbe able to obtain it (109,170,454,520). To the extentthat residents’ behavioral symptoms are caused orexacerbated by inappropriate care, this access prob-lem is also attributable to inappropriate care.

The reluctance of nursing homes to admit personswith dementia, especially those who are perceived tohave behavioral symptoms, was documented in a


1990 report of the General Accounting Office(GAO), Nursing Homes: Admission Problems forMedicaid Recipients and Attempts To Solve Them(454). The GAO report was based on interviews withMedicaid and health department officials, long-termcare ombudsmen, representatives from nursing homeindustry associations, advocates for the elderly,hospital discharge planners, and nursing homeofficials in nine States. The report focuses primarilyon the problems Medicaid recipients face whentrying to gain admission to nursing homes but alsonotes the access problems encountered by individu-als with dementia. According to the GAO report:

Elderly with behavioral problems thought to becaused by Alzheimer’s disease or other conditionsmay have trouble getting into nursing homes whetherthey are Medicaid recipients or not. Officials in allnine States indicated that access problems probablyexist for these people, but none could estimate theextent of the problems. Residents with Alzheimer’sdisease often disrupt other nursing home residents.In addition, some Alzheimer’s residents have atendency to wander, making them difficult to man-age in nursing homes not specifically designed toallow wandering in a controlled environment. Nurs-ing homes specifically consider behavior during theadmissions process, one California advocate ex-plained, and determine how well the individualwould fit in with the overall environment of thehome. Discharge planners from the Ohio StateUniversity Hospital told us that they have troubleplacing Alzheimer’s patients who are combative orwander. In Mississippi, Alzheimer’s residents areconsidered heavy care residents in a nursing homemarket oriented toward light care (emphasis added)(454).

It is possible that if residents with dementiareceived more appropriate nursing home care, theywould, in general, be less difficult to care for, andnursing home administrators and staff would bemore willing to admit them.

Negative Consequences for the Families ofResidents With Dementia

Problems in the nursing home care provided forindividuals with dementia also have negative conse-quences for the residents’ families. Many families ofindividuals with dementia feel intensely guilty andsad about having to place the individuals in nursinghomes (45,84,107,128,263,349). Although it mightbe assumed that family members who have beencaring for a person with dementia at home would feel

relieved when the person is finally admitted to anursing home, at least five studies have shown thatfamily members’ continue to feel guilty, sad, anx-ious, and stressed (152,341,349,424,516). Thesefeelings are probably due primarily to the patient’scondition and other factors that have made nursinghome placement necessary, but the feelings areundoubtedly intensified if the family perceives thatthe individual is receiving inappropriate or poor-quality care. Families are particularly likely to beanxious if they believe the nursing home staffmembers are not knowledgeable about dementia(84,162,263).

Other negative consequences for families arisebecause of the failure of many nursing homes torecognize and respond to families’ needs. Nursinghomes generally focus their efforts on the residentsand may ignore families and fail to involve themsufficiently in the residents’ care (349). Families ofnursing home residents with dementia generallywant to be involved in the individuals’ care (46,166,418).Since many of the primary caregiving functions havebeen assumed by the nursing home, family membersmay be uncertain about their role. In some instances,a competitive or adversarial relationship developsbetween the family and the staff, with negativeconsequences for the family, the resident, and thestaff (45,50,55).

Visiting is frequently more difficult for familiesof nursing home residents with dementia than forfamilies of other nursing home residents (45,125).Although families of residents with dementia gener-ally visit regularly, at least two studies have foundtheir visits are shorter and less enjoyable than thenursing home visits of families of nondementedresidents (310,515). If the nursing home fails torecognize and respond to this problem, families mayvisit less often, again with negative consequencesfor everyone involved.

Negative Consequences for Nursing Home StaffMembers

As noted earlier, individuals with dementia areoften difficult for nursing home staff members tomanage because of their behavioral symptoms(107,167,170,181,191,263,352,359,385). Staff mem-bers are most likely to be disturbed by verbally orphysically aggressive and demanding behaviors(134,191,506). Other resident behaviors that aredisturbing to nursing home staff members are

Chapter 2-Nursing Home Residents With Dementia: Characteristics and Problems . 77

resistance to care, wandering, repetitive questions,agitation, crying, and withdrawal.

The difficulty of caring for residents with demen-tia causes stress, lowered morale, and burnout forsome, and perhaps many, nursing home staff mem-bers (191,263,346,352,398). These staff responsesmay in turn lead to increased absenteeism and staffturnover. To the extent that residents’ behavioralsymptoms are caused or exacerbated by inappropri-ate nursing home care, the job of staff members isunnecessarily difficult. Any resulting absenteeismor staff turnover is unnecessary in the same sense.

Negative Consequences for NondementedNursing Home Residents

Nondemented nursing home residents may alsoexperience negative consequences because of prob-lems in the care provided for residents with demen-tia. Behavioral and psychiatric symptoms of resi-dents with dementia, e.g., agitation, restlessness,screaming repetitive verbalizations, and combative-ness, are upsetting for nondemented residents(46,220,263,268,352,373). The cognitive and func-tional impairments of residents with dementia mayalso be bothersome to nondemented residents. Tothe extent that these problems are caused or exacer-bated by inappropriate care, they unnecessarilyreduce the quality of life of nondemented residents.

There is disagreement about the overall impact onnondemented nursing home residents of living inclose proximity with demented residents (270,398).Some commentators argue nondemented residentsbenefit overall from living in close proximity withdemented residents, primarily because of bonding,the potential for mutual assistance, and reduced staffexpectations for the nondemented residents (69,486,503).other commentators argue that nondemented resi-dents are harmed overall by living in close proximitywith nondemented residents and that it is unfair tonondemented residents to be placed in a 24-hourliving situation with someone with dementia(1,148,220,354,373,510).

The two studies OTA is aware of that address thisissue indicate nondemented nursing home residentswho live in close proximity to residents withdementia have significantly reduced mental andemotional status and reduced social interactions.Wiltzius et al. compared the mental and emotionalstatus of 20 nondemented nursing home residents

before and 2 weeks after they were moved into aroom with a demented resident (507). Two of the 20nondemented residents showed signs of cognitivedecline after the move; 17 of the 20 residentsexpressed feelings of depression and loneliness; 12expressed feelings of anxiety and insecurity overhaving a roommate who was confused; and 5 werejudged by staff members to be less friendly and moreirritable after the move. In contrast, 2 of the 20residents became more friendly and expressed con-cern for their demented roommate. The controlgroup did not show similar changes over the 2-weekperiod, but it is not clear from the study reportwhether the control group members were moved atthe beginning of the study.

Teresi et al. compared the mental and emotionalstatus and other characteristics of 72 nondementednursing home residents, one-third of whom shared aroom or lived in a room adjacent to a dementedresident (438). After 6 months, the nondementedresidents who shared a room or lived in a roomadjacent to a demented resident were significantlymore likely than the other nondemented residents toexpress dissatisfaction with life in general, the unit,their room, their roommate, and the amount of noisein the room. They were significantly more likely tobe perceived as depressed by staff members andsignificantly less likely to receive visits or phonecalls from family or friends.

It is unclear whether the negative outcomes fornondemented residents in these two studies areattributable to characteristics of the demented resi-dents that are caused by their dementing illness or tocharacteristics that are caused by problems in thenursing home care they receive. In either case,placing the demented and nondemented residents inseparate units would eliminate the cause of theproblems. As discussed in chapter 1, some commen-tators believe placing individuals with dementia inspecial care units may be justifiable solely on thegrounds that it benefits nondemented residents,assuming the placements do not harm the dementedresidents.

Summary

Complaints and concerns about the quality andappropriateness of the care provided for nursinghome residents with dementia by most nursinghomes are pervasive. In comparison with the prob-


lems identified by the Institute of Medicine in its1986 report on nursing home care for all types ofresidents, complaints and concerns about the careprovided for residents with dementia focus more onlack of staff knowledge about how to respond toresidents’ behavioral symptoms and physical as-pects of nursing homes that are perceived to beinappropriate for individuals with dementia (e.g.,lack of cues to help residents find their way and lackof appropriate space for residents to wander). Boththe Institute of Medicine’s report and the literatureon nursing home care for persons with dementia citeoveruse and inappropriate use of psychotropic medi-cations and physical restraints. Although theseproblems affect all nursing home residents to somedegree, they are more likely to affect residents withdementia.

Problems in the care of nursing home residentswith dementia have negative consequences for theresidents, their families, nursing home staff mem-bers, and nondemented nursing home residents.Inappropriate nursing home care tends to exacerbatethe effects of an individual’s dementing disease orcondition. In particular instances, however, it maybe difficult to differentiate effects of an individual’sdementing disease or condition and effects ofinappropriate care.

Inappropriate nursing home care can cause excessdisability in terms of a resident’s cognitive function-ing, mood, self-care abilities, and behavior. To theextent that inappropriate care causes excess disabil-ity, it makes the job of nursing home staff membersmore difficult and may therefore be indirectlyresponsible for increasing staff stress, absenteeism,and turnover. Likewise, to the extent that inappropri-ate care causes or exacerbates the cognitive deficitsand mood and behavioral symptoms of residentswith dementia, it may be indirectly responsible forreducing the quality of life of nondemented residentswho live with or near demented residents.

CONCLUSIONA very large number and proportion of nursing

home residents have dementia, although many ofthem do not have a diagnosis of dementia in theirmedical records. Compared with nondemented nurs-ing home residents, residents with dementia are, onaverage, older, more functionally impaired, andmore likely to have depressive, psychotic, andbehavioral symptoms. On the other hand, nursing

home residents with dementia are also diverse.According to national surveys, 5 percent of nursinghome residents with dementia are under age 65; 4 to46 percent do not have impairments in activities ofdaily living, depending on the specific activity; 30percent do not have depressive symptoms; 64percent do not have psychotic symptoms; and 40percent do not have behavioral symptoms. Some arephysically healthy except for their dementia, andothers have many diseases and physical impairmentsin addition to their dementia.

For policy purposes, it is important to note that thediversity of nursing home residents with dementiamakes it unlikely any particular type of unit will beappropriate for all these individuals. With respect tothe long-range possibilities for special care unitsdiscussed in chapter 1, it is also important to notethat placing all nursing home residents with demen-tia in special care units would not eliminate residentswith behavioral symptoms from nonspecializedunits since more than one-third of nursing homeresidents with behavioral symptoms are not de-mented.

Special care units have been developed primarilyin response to perceived problems in the careprovided for residents with dementia in manynursing homes. Some of these problems affect allnursing home residents and others affect primarilyresidents with dementia. Even if the problems thataffect all nursing home residents were solved, someproblems that affect primarily residents with demen-tia would remain. These problems include lack ofcues to help residents find their way, lack ofappropriate space for residents to wander, and lackof specific staff training about methods of caring forindividuals with dementia, including appropriatemethods of responding to residents’ behavioralsymptoms.

Special care units promise to provide betternursing home care than is currently available forindividuals with dementia. By providing better care,they expect to benefit residents, residents’ families,nursing home staff, and nondemented residents.Better care can only alleviate impairments notdirectly or inevitably caused by an individual’sdementing disease or condition. Likewise, bettercare for residents can only lessen that portion offamily members’ feelings of guilt, sadness, andanxiety due to inappropriate care, not the portion ofthose feelings caused by a resident’s impairments or


deteriorating condition. Similar considerations apply Research findings with respect to the outcomes ofto the potential impact of better care on nursing special care units should be evaluated with thesehome staff members and nondemented residents. considerations in mind.

Chapter 3

Special Care Units ForPeople With Dementia:

Findings From Descriptive Studies

ContentsPage

INTRODUCTION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 83TYPES OF DESCRIPTIVE STUDIES OF SPECIAL CARE UNITS . . . . . . . . . . . . . . . .NUMBER OF NURSING HOMES THAT HAVE A SPECIAL CARE UNIT . . . . . . . .CHARACTERISTICS OF NURSING HOMES THAT HAVE A

SPECIAL CARE UNIT ... ... ... ... ... ... ..*. .*. ... ... **. .. *.. ... *c*. .* *a**,Ownership . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . . . . . .Certification Status . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Nursing Home Size . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Nursing Home Location . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

CHARACTERISTICS OF SPECIAL CARE UNITS. . . . . . . . . . . . .

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Number of Residents . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . . .Age of the Units . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . . . . . .Patient Care Philosophies and Goals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Physical Design and Other Environmental Features . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Staff Composition and Training . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Staff-to-Resident Ratios . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .staff support Groups . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Activity Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Programs for Families . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Use of Psychotropic Drugs and Other Medications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Use of Physical Restraints . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . . . . . . . . . . . .Admission and Discharge Policies and Practices . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Costs, Charges, and Payment Methods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

DESCRIPTIVE TYPOLOGIES OF SPECIAL CARE UNITS . . . . . . . . . . . . . . . . . . . . . . .CHARACTERISTICS OF SPECIAL CARE UNIT RESIDENTS . . . . . . . . . . . . . . . . . . .CONCLUSION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .FORTHCOMING DESCRIPTIVE INFORMATION ABOUT SPECIAL

+.. .

CARE UNITS AND SPECIAL CARE UNIT RESIDENTS . . . . . . . . . . . . . . . . . . . . . . .

8385

8888898990909090919294959595969696979899

101103

106

TablesTable Page3-1. Descriptive Studies of Special Care Units... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 843-2. Characteristics of Nursing Homes That Had a Special Care Unit in

1987 or Planned To Have a Special Care Unit by 1991, United States, 1987..... 883-3. Proportion of Special Care Units That Encouraged or Discouraged

Admission of Residents With Certain Problems . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 983-4. Ratings on Some Variables for Eight Types of Special Care Units . . . . . . . . . . . . . . . 1003-5. Impairments in Activities of Daily Living Among Special Care Unit Residents,

Residents With Dementia in Nonspecialized Nursing Home Units, andAll Nursing Home Residents . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 102

3-6. Conclusions From Descriptive Studies of Special Care Units . . . . . . . . . . . . . . . . . . . 104

Chapter 3

Special Care Units For People With Dementia:Findings From Descriptive Studies

INTRODUCTIONMuch of the existing literature on special care

units consists of reports about an individual unit.These reports usually describe the physical designfeatures, patient care philosophy, activity programs,and other characteristics of the unit that make itspecial in the view of the report authors. The reportsoften present anecdotal evidence of the positiveoutcomes of the unit and advocate the developmentof more special care units like the one beingdescribed.

Descriptive reports on individual special careunits are interesting in that they convey the authors’commitment to providing better care for individualswith dementia and the authors’ perceptions aboutwhat constitutes appropriate nursing home care forthese individuals. On the other hand, the anecdotalevidence presented in these reports about the posi-tive outcomes of individual special care units is notadequate to evaluate their effectiveness. Moreover,many of the descriptive reports on individual specialcare units do not provide enough detailed informa-tion about the characteristics of the units to allow ameaningful comparison of different units.

Research on special care units is in an early stage,but in the past few years, a number of studies ofspecial care units have been conducted. Some of thestudies are descriptive, and others are evaluative.The descriptive studies provide information aboutthe number and characteristics of special care unitsnationally and in certain geographic areas and aboutthe similarities and differences among special careunits and between special care units and nonspecial-ized nursing home units. The evaluative studiesattempt to measure the effectiveness of one or morespecial care units in terms of changes in aspects oftheir residents’ condition and functioning over time.

This chapter discusses what is known aboutspecial care units from the available descriptivestudies. Chapter 4 discusses the findings of theavailable evaluative studies. The findings of thesestudies are discussed in some detail because theyprovide a basis for informed policy decisions aboutthe development of special regulations and reim-

bursement for special care units, about the need forand content of consumer education materials onspecial care units, and about the future direction andlevel of government support for research on specialcare units.

Table 3-6 at the end of this chapter lists OTA’sconclusions from the descriptive studies discussedin the chapter. (An identical list appears in table 1-2inch. 1). Probably the most important conclusion forpolicy purposes is the diversity of existing units. Itis also clear from available studies that althoughmost special care units have a method of locking orotherwise securing the unit, many units do notincorporate the other physical design features rec-ommended in the special care unit literature. More-over, at least one-quarter of existing units report theydo not provide special training for their staffmembers. On the positive side, physical restraintsare used far less in special care units than in othernursing home units. On average, special care unitsalso have fewer residents and more staff membersper resident than other nursing home units, andspecial care unit residents are probably more likelythan individuals with dementia in nonspecializedunits to participate in activity programs.

TYPES OF DESCRIPTIVE STUDIESOF SPECIAL CARE UNITS

Descriptive studies of special care units includestudies of three types:

. studies of nursing homes that include questionsabout special care units,

. studies that compare selected special care units,and

. studies that compare selected special care unitsand selected nonspecialized nursing home units.

Tables 3-la, 3-lb, and 3-lc list the descriptivestudies of each type for which conclusions arecurrently available at least in draft form. To OTA’sknowledge, these tables include all such studies. Foreach study, the tables identify the citation, the yearthe study was conducted, the source of funding forthe study if given in the study report, and the generalmethod of the study. The following sections review

–83-


Table 3-l—Descriptive Studies of Special Care Units

a. Descriptive Studies of Nursing Homes That Include Questions About Special Care Units

Year ofCitation the study Funding source Method of the study

Hepburn et. al.,1988

Holmes et al.,1992

Leon et. al.,1990

Mayers andBlock, 1990

1986 No funding source reported Mail survey of all 438 licensed nursing homes in Minnesota, with a 76 percentresponse rate.

1990 See note below Mail and telephone survey of all nursing homes in 5 northeastern States(Connecticut, Massachusetts, New Jersey, New York, and Pennsylvania),with an 81 percent response rate.

1987 Agency for Health Care On-site survey of a nationally representative sample of 759 nursing homes,Policy and Research using questionnaires and face-to-face interviews with facility administrators

and staff.

1989 No funding source reported Mail survey of all 305 nursing homes in Washington State, with a 50 percentresponse rate.

b. Descriptive Studies That Compare Selected Special Care Units

Cairl et. al., 1990 Administration on Aging Study comparing 13 nursing home special care units in 10 counties in west1991 central Florida, using an interview schedule for face-to-face interviews with

facility staff.

Hyde, 1989 not University of Massachusetts, Study of 7 nursing home special care units in eastern Massachusetts, usingreported Gerontology Institute a semi-structured interview schedule.

Knoefel, 1989 Department of Veterans Study of 5 special care units in VA and nonVA facilities, using chart reviewsunpublished Affairs and an interview schedule.manuscript

Mace, 1991 1988-1989 No funding source reported Mail survey of 12 nursing home special care units.

Ohta and not No funding source reported Study of 16 nursing home special care units, using published andOhta, 1988 reported unpublished reports, facility manuals, and site visits.

Weiner and 1985-1986 Partial funding from the Mail survey of 22 nursing home special care units and several specializedReingoid, 1989 Brookdale Foundation programs in other settings.

White and 1987 Oregon State University Mail survey of 99 nursing home special care units in 34 States.Kwon, 1991

c. Descriptive Studies That Compare Selected Special Care Units and Selected Nonspecialized Nursing Home Units

Lindman et al., 19901991

Mathew et. al., Not1988 reported

Rovner et. al., Notno date reported

Sloane et. al., 1987-19891990

Riter and Fries, 19901992

California Department ofHealth Services

No funding source reported

No funding source reported

Alzheimer’s Association

Health Care Financing Ad-ministration

Study comparing 11 individuals with dementia in 2 nursing home specialcare units, 11 individuals with dementia in nonspecialized units in 2 nursinghomes, and 8 individuals with dementia in 2 residential care facilities, usingchart reviews, questionnaires, and patient observation.

Study comparing 13 individuals with dementia in one nursing home specialcare unit and 34 individuals with dementia in nonspecialized units in 2nursing homes, using chart reviews and patient observation and examina-tion.

Study comparing 19 individuals with dementia in one nursing home specialcare unit and 20 individuals with dementia in nonspecialized units of thesame nursing home, using chart reviews and patient observation andexamination.

Study comparing 10 individuals with dementia in each of 31 nursing homespecial care units and 32 nonspecialized nursing home units in 5 States,using chart reviews, questionnaires, and patient observation.

Study comparing 127 individuals with dementia in 10 nursing home specialcare units and 103 individuals with dementia in nonspecialized units in thesame nursing homes, using chart reviews, questionnaires, and patientobservation.

NOTE: Thisstudywasoonducted by researchers atthe Hebrew Home forthe Aged to obtain information about special care units in five States that would allowthem to identify a sample of units for their study of the impact of special care units; the latter study is funded by the National Institute on Aging, but nofindings are yet available from it.

SOURCE: Office of Technology Assessment, 1992.

Chapter 3-Findings From Descriptive Studies ● 85

the findings of these studies with respect to thenumber of nursing homes with a special care unit,the characteristics of these nursing homes, thecharacteristics of the special care units, and thecharacteristics of their residents.

In 1991, researchers at George Washington Uni-versity in Washington, DC, mailed a questionnaireabout special care units to more than 17,000 nursinghomes nationwide (246). Results of this survey withrespect to the number of nursing homes that have aspecial care unit are noted in the following section.As of May 1992, the other findings of the surveywere still being analyzed. Once available, thesefindings will greatly expand existing informationabout special care units. OTA is aware of two othersources of forthcoming descriptive information aboutspecial care units which are described in the lastsection of the chapter.

NUMBER OF NURSING HOMESTHAT HAVE A SPECIAL

CARE UNITFive studies conducted between 1987 and 1991

provide information about the number and propor-tion of nursing homes that have a special care unit.The five studies are discussed in this section.Because of differences among the studies anddefinitional questions, no firm conclusion can bedrawn at this time about the number or proportion ofnursing homes that have a special care unit. Based onthe results of the two most recent studies, OTAestimates that in 1991, 10 percent of all nursinghomes in the United States had a special care unit.This proportion varies among States, and at least insome States, it includes nursing homes that groupsome of their residents with dementia in clusters inunits that also serve nondemented residents, ratherthan placing the residents in an entirely separatespecial care unit.

The 1987 National Medical Expenditure Surveyconducted by the Agency for Health Care Policy andResearch is, thus far, the only study of a nationallyrepresentative sample of nursing homes that hasincluded questions about special care units. Thesampling frame for the study was 22,064 nursinghomes and personal care homes, including allMedicare and Medicaid-certified nursing homes andall State-licensed and otherwise officially recog-nized nursing and personal care homes that: 1) havethree or more beds, 2) provide personal care, and 3)

are not primarily facilities for the mentally ill ormentally retarded. Eight percent of the 759 facilitiesin the survey sample reported having a special careunit (249). Extrapolated to the 22,064 facilities in thesampling frame, this finding indicates that 1668nursing and personal care homes in the U.S. had aspecial care unit in 1987. These units were estimatedto contain more than 53,000 beds.

The 1987 National Medical Expenditure Surveyalso found that many nursing and personal carehomes had plans to establish a special care unit. Thesurvey data indicate that in 1987, 1444 facilities thatdid not have a special care unit intended to establishone by 1991. Moreover, 535 of the facilities thatalready had a special care unit planned to expandtheir unit by 1991. If all these plans had materialized,more than 3100 nursing and personal care homes (14percent of the facilities in the survey samplingframe) would have had a special care unit by 1991,and these units would have contained almost 100,000beds.

When published in 1990, the figures from the1987 National Medical Expenditure Survey weremuch higher than any previous estimates, but theywere generally accepted as accurate. A few publicofficials and other individuals in some States toldOTA informally that they did not believe as many as8 percent of the nursing homes in their State had aspecial care unit in 1987 or that 14 percent would in1991. Data from the 1987 National Medical Expen-diture Survey cannot be broken down by State (246),so the survey data cannot be used to determine thenumber or proportion of nursing homes in particularStates that have a special care unit. The data do showthat the proportion of nursing homes with a specialcare unit varies in different regions of the country,and findings of several studies discussed belowindicate the proportion varies by State.

To OTA’s knowledge, four studies have at-tempted to survey all nursing homes in a givengeographic area and thus to determine the totalnumber of nursing homes that have a special careunit in that area. One of the four studies, a mailsurvey conducted from 1989 to 1990 of all 305nursing homes in Washington State found that only3 percent of the 154 facilities that responded to thesurvey (or about 1.5 percent of all nursing homes inthe State) reported having a special care unit (294).

A 1986 mail survey of all 438 nursing homes inMinnesota found that 7 percent of the 332 facilities


that responded to the survey reported having aspecial care unit (18 1). An additional 7 percent of theresponding facilities reported they planned to estab-lish a special care unit in the next 2 to 3 years. If theseplans had materialized, 14 percent of the respondingfacilities (or 11 percent of all nursing homes inMinnesota) would have had a special care unit by1988 or 1989.

In 1990, researchers at the Hebrew Home for theAged in Riverdale, NY, mailed a questionnaireabout special care units to all nursing homes in fivenortheastern States (194). Seven percent of the 2370nursing homes in the 5 States reported having at leastone special care unit. An additional 5 percent of thenursing homes reported that although they did nothave a special care unit, they did place some of theirresidents with dementia in clusters in units that alsoserved nondemented residents. Thus, a total of 12percent of the facilities reported using some methodto physically group residents with dementia-eitherin a special care unit or in a cluster in units that alsoserve nondemented residents. A telephone followupto a random sample of 150 of the nursing homesfound that in 15 of the facilities (10 percent), thenursing home administrator and the director ofnursing disagreed about whether their facility had aspecial care unit. The researchers reduced theirprevious estimate to eliminate these questionableunits. Their conservative conclusion is that in 1990,11 percent of all nursing homes in the 5 States hadat least one special care unit or cluster unit.

As noted earlier, in 1991, researchers at GeorgeWashington University mailed a questionnaire aboutspecial care units to about 17,000 nursing homesnationwide, including all nursing homes thought tohave 30 or more beds and to serve primarily elderlypeople. After the elimination of facilities that hadclosed or did not meet these criteria, there were15,490 potential respondents (246). Four thousandquestionnaires were completed and returned. Theresearchers telephoned most of the nursing homesthat did not return the questionnaire. As of May1992, information was available on more than14,000 nursing homes (90 percent of all nursinghomes in the sampling frame). Based on thisinformation, the researchers concluded that in 1991,1463 nursing homes had a special care unit or aspecial program for residents with dementia. Ninetypercent of the 1463 nursing homes with a specialcare unit or special program reported the unit orprogram was in a physically distinct part of the

facility. If only these nursing homes are counted ashaving a special care unit, 1318 nursing homes (9percent of all nursing homes in the sampling frame)had a special care unit in 1991.

The George Washington University survey foundgreat differences among States in the proportion ofnursing homes in the State that had a special careunit or special program for residents with dementia(247). Preliminary analysis of the data shows that insome States a surprisingly high proportion ofnursing homes reported having a special care unit orspecial program for residents with dementia: 36percent of the nursing homes in Arizona and 27percent of the nursing homes in Utah reportedhaving such a unit or program.

The George Washington University survey alsofound that many of the nursing homes that did nothave a special care unit in 1991 planned to establishone, and some of the nursing homes that did have aspecial care unit planned to expand it (247). Prelim-inary analysis of the survey data shows that 1000 to1600 of the nursing homes (6 to 10 percent of allnursing homes in the sampling frame) planned toestablish a new special care unit or expand theirexisting unit.

For several reasons, the results of the five studiesdescribed in this section are not precisely compara-ble. First, the studies sampled different types offacilities (i.e., nursing homes and personal carehomes, all nursing homes, or nursing homes withmore than 30 beds). Second, the studies identifieddifferent types of units (i.e., special care units andcluster units), and some of the studies also includedspecial programs. Third, the studies covered differ-ent geographic areas. Lastly, the studies wereconducted over a 4-year period during which thenumber and proportion of nursing homes with aspecial care unit undoubtedly increased.

The preliminary estimate from the 1991 GeorgeWashington University survey and the conclusion ofthe 1990 survey of all nursing homes in 5 northeast-ern States show that 9 to 11 percent of the nursinghomes had a special care unit, a cluster unit, or aspecial program for residents with dementia. Almosthalf the units identified in the 1990 survey of allnursing homes in five northeastern States werecluster units (194). It is unclear whether the 1463special care units and special programs identified inthe George Washington University survey includecluster units, and if so, how many.

Chapter 3--Findings From Descriptive Studies . 87

The biggest discrepancy in the findings of the fivestudies is between the total number of special careunits and special programs identified by the 1987National Medical Expenditure Survey (1668 unitsand programs) and the total number identified in the1991 George Washington University survey (1463units and programs). These figures suggest there wasa decrease in the number of special care units andprograms between 1987 and 1991, a highly unlikelyconclusion. The figures lend themselves to two otherexplanations:

1. the 1987 National Medical Expenditure Sur-vey overestimated the number of special careunits, and

2. the 1991 George Washington University studyunderestimated the number of special careunits.

One or both of these explanations could be correct.l

The 1987 National Medical Expenditure Surveyand the 1991 George Washington University surveyasked about special care units and special programs.The researchers who worked on the special care unitportion of the 1987 National Medical ExpenditureSurvey concluded on the basis of the survey findingsand the results of other studies that virtually all thefacilities that reported having a special care unit ora special program in 1987 had at least one specialcare unit (246). As noted earlier, 90 percent of the1463 nursing homes identified in the 1991 GeorgeWashington University survey as having a specialcare unit or program reported their unit or programwas in a physically distinct part of the facility. Ifonly these nursing homes are counted as having aspecial care unit, the discrepancy between thefindings of the 1987 and 1991 surveys is bigger andmore difficult to explain.

An obvious obstacle to developing accuratefigures on the number of nursing homes with aspecial care unit is the lack of a standard definitionof the term special care unit. All the figures cited inthis section are based on self-report, and most reflectthe opinions of the nursing home administrators andother survey respondents about what a special careunit is. The 1990 survey of all nursing homes in 5northeastern States found that only 49 percent of thenursing homes that placed their residents with

dementia in a separate unit and only 12 percent of thenursing homes that placed their residents withdementia in clusters in nonspecialized units used theterm “special care” for these arrangements (194).Moreover, as noted earlier, in 10 percent of the 150facilities contacted by telephone, the nursing homeadministrator and the director of nursing disagreedabout whether their facility had a special care unit.

Having a standard definition of the term specialcare unit would facilitate the development ofaccurate figures on the number of nursing homeswith a unit that met that definition. On the otherhand, units that did not meet the definition would notbe counted. Since research on special care units is inan early stage, it is important not to define away carearrangements that may turn out to be variants ofspecial care units. In this context, it should be notedthat the first information about the large number ofcluster units in some States was derived from a studythat deliberately did not define the term special careunit and instead asked a very broad question aboutthe “types of living arrangements available forcognitively impaired (demented) residents’ in thefacility (177). Although cluster units do not meetsome definitions of the term special care unit,information on cluster units presented later in thischapter shows that significant proportions of theseunits incorporate features said to be important inspecial care units (e.g., physical design features,special staff training, staff support groups, familysupport groups, and formal admission and dischargecriteria).

I n summary, findings of the 1987 NationalMedical Expenditure Survey indicated that 8 percentof all nursing homes had a special care unit in 1987and that if plans reported in 1987 materialized, 14percent of all nursing homes would have a specialcare unit in 1991. Results of several studies con-ducted since 1987 suggest the figures from the 1987National Medical Expenditure Survey overestimatethe number and proportion of nursing homes that hada special care unit in 1987 and the number andproportion that would have a special care unit by1991. Based on available data, OTA estimates thatin 1991, 10 percent of nursing homes in the UnitedStates had a special care unit. This proportion variesin different States, and in at least some States, it

1 Another theoretically possible but unlikely explanation is that many of the special care units included in the 1987 figure are in personal care homesor nursing homes with fewerthau 30 beds which were included in the 1987 National Medical Expenditure Survey but not in the 1991 George WashingtonUniversity survey.


includes nursing homes that group some of theirresidents with dementia in clusters in units that alsoserve nondemented residents.

States (194), and a University of North Carolinastudy conducted from 1987 to 1989 that compared31 randomly selected special care units and 32matched nonspecialized units in 5 States (413).

CHARACTERISTICS OFNURSING HOMES THAT HAVE

A SPECIAL CARE UNITNursing homes that have a special care unit differ

from other nursing homes in their ownership,certification status, size, and geographic location.Table 3-2 presents information from the 1987National Medical Expenditure Survey on each ofthese characteristics for all nursing homes andpersonal care homes in the survey sample, for thenursing and personal care homes that reportedhaving a special care unit in 1987, and for thenursing and personal care homes that reported theywould have a special care unit by 1991 (248). Othersources of information about the characteristics ofnursing homes with a special care unit are the 1986survey of nursing homes in Minnesota (181), the1990 survey of all nursing homes in 5 northeastern

Ownership

As shown in table 3-2, the National MedicalExpenditure Survey found that 60 percent of thenursing and personal care homes that reportedhaving a special care unit in 1987 were privatelyowned, for-profit facilities; 21 percent were pri-vately owned, nonprofit facilities, and 19 percentwere publicly owned (249). The proportion offor-profit facilities that reported having a specialcare unit in 1987 (60 percent) was smaller than mightbe expected, given that 73 percent of all facilities inthe survey sample were for-profit facilities. Incontrast, the proportion of publicly owned nursinghomes that reported having a special care unit (19percent) was greater than might be expected, giventhat only 5 percent of all facilities in the surveysample were publicly owned.

Table 3-2-Characteristics of Nursing Homes That Had a Special Care Unit in 1987 or Planned To Have aSpecial Care Unit by 1991, United States, 1987

Number of nursing homes Number of nursing home beds

with a with a In special In specialspecial care special care care units care units

Characteristic of facilities Total unit in 1987 unit by 1991 Total in 1987 by 1991Totals 22,064 1,668 3,112 1,645,861 53,798 99,698

Percent of total Percent of total

OwnershipFor profit, . . . . . . . . . . . . . . . . .

Independent . . . . . . . . . . . .Multi-facility . . . . . . . . . . . .

Nonprofit . . . . . . . . . . . . . . . . .Public . . . . . . . . . . . . . . . . . . . .

73%353823

5

60%27332 1b

19b

57%a

28292815

67%244424

9

69%31381813b

51%2129381 2b

SNF CertificationYes . . . . . . . . . . . . . . . . . . . . . .No . . . . . . . . . . . . . . . . . . . . . . .

4060

75a

25a

70a

30a6436

7624

8119’

Facility size (number of beds)<1oo . . . . . . . . . . . . . . . . . . . . .100-149 . . . . . . . . . . . . . . . . . .150+ . . . . . . . . . . . . . . . . . . . . .

692011

452826a

47a2627a

363232

343234

412436

RegionNortheast . . . . . . . . . . . . . . . . .Mideast . . . . . . . . . . . . . . . . . . .South . . . . . . . . . . . . . . . . . . . .West . . . . . . . . . . . . . . . . . . . . .

19293022

2716a

2237

30222326

22313017

2218a

2337a

2029a

2129

astatistial[y signifi~nt in comparison to the total column.bRelative standard error X30 w~ent.

SOURCE: J. Imon, D. Potter, and P. Cunningham, “Avaiiabiiity of Special Nursing Home Programs for Aizheimer’s Disease Patients,” Ametkan Journa/ ofAkheimer’s Care and Related Disorders and Research 6(1):2-11, 1991.


In terms of bed capacity, 69 percent of the specialcare unit beds were in for-profit facilities in 1987; 18percent were in nonprofit facilities, and 13 percentwere in publicly owned facilities (see table 3-2).Thus, the proportion of special care unit bed capacityin for-profit facilities (69 percent) was about thesame as would be expected, given that 67 percent ofall bed capacity was in for-profit facilities. Specialcare unit bed capacity in publicly owned facilities(13 percent) was slightly greater than would beexpected, given that only 9 percent of all bedcapacity was in publicly owned facilities.

The greatest growth in special care units andspecial care unit bed capacity from 1987 to 1991 wasprojected to occur in nonprofit facilities. Whereas in1987,21 percent of special care units and 18 percentof special care unit beds were in nonprofit facilities,by 1991, 28 percent of special care units and 38percent of special care unit beds were projected to bein nonprofit facilities (see table 3-2).

In 1987, about one-third of all special care unitsand 38 percent of all special care unit beds were innursing homes owned by multi-facility corporations(see table 3-2). These proportions were projected todecrease slightly by 1991. The Hillhaven Corp. ofTakoma, WA, the Nation’s second largest multi-facility nursing home corporation, was probably thefirst such corporation to establish special care unitsfor persons with dementia. As of late 1990, 56Hillhaven-owned nursing homes had a special careunit, and these special care units contained 1283beds (337).

OTA contacted a few other multi-facility nursinghome corporations to find out how many of thenursing homes they own have a special care unit.Manor Care Corp. of Silver Spring, MD, reportedthat as of late 1990, 51 of its nursing homes had aspecial care unit (157). ARA Living Centers ofHouston, TX, reported 35 of its nursing homes hada special care unit (3). Unicare Health Facilities ofMilwaukee, WI, reported 15 of its nursing homeshad a special care unit (374).

Data from the 1987 National Medical ExpenditureSurvey indicate that by 1991, multi-facility nursinghome corporations planned to have more than 900nursing homes with a special care unit. If these plans

had materialized, the four corporations just men-tioned would account for only 17 percent (157 out of900) of all such nursing homes. These figuresindicate that ownership of special care units is notdominated by a small number of multi-facilitynursing home corporations.

A 1989 survey by the U.S. Department ofVeterans Affairs (VA) found that 31 of the 172 VAmedical centers nationwide had one or more specialcare units (159). The VA has issued no formaldepartment-wide policies on special care units.Thus, the special care units identified in&e surveywere established entirely on the initiative of theindividual VA medical centers. The 31 units identi-fied by the 1989 survey were in acute care hospitalunits, intermediate care units, and long-term careunits (103).

Certification Status

According to the 1987 National Medical Expendi-ture Survey, nursing homes that were certified byMedicare or Medicaid as skilled nursing facilities(SNFs) were far more likely than other nursinghomes to have a special care unit (248). As shown intable 3-2, this pattern was projected to continue to1991. A telephone survey of all nursing homes infive States conducted in 1987 and 1988 also foundSNFs were more likely than other nursing homes tohave a special care unit (413).2

Nursing Home Size

As shown in table 3-2, larger nursing and personalcare homes are far more likely than smaller facilitiesto have a special care unit. This finding from the1987 National Medical Expenditure Survey agreeswith the results of the 1986 survey of nursing homesin Minnesota which found that 18 percent of nursinghomes with more than 100 beds had a special careunit, compared with only 2 percent of nursing homeswith less than 100 beds (181). The University ofNorth Carolina study of 31 randomly selectedspecial care units in 5 States found the nursinghomes with a special care unit had an average of 192beds, compared with an average of 92 beds for allU.S. nursing homes (413). The 1990 study of allnursing homes in 5 northeastern States found thatnursing homes with a special care unit had an

z me SNF categow for Medicaid cetiication of nursing homes was eliminated in 1990 due to the implementation Of Ceh prOViSiOnS Of tieOmnibus Budget Reconciliation Act of 1987 (OBIG4-87). As a result the distinction between SNFS and other nursing homes will not be important infuture special care unit research.


average of 251 beds, compared with an average of166 beds for nursing homes with a cluster unit, and130 beds for nursing homes without either a specialcare unit or a cluster unit (194).

Nursing Home Location

According to the 1987 National Medical Expendi-ture Survey, nursing and personal care homes in theWest were more likely than nursing and personalcare homes in other regions of the country to have aspecial care unit (248). As shown in table 3-2, 22percent of all the facilities and 37 percent of thefacilities with a special care unit were in the West.In contrast, 29 percent of all the facilities but only 16percent of the facilities with a special care unit werein the Midwest. Projections for 1991 suggestedspecial care units would be more evenly distributedacross the regions.

CHARACTERISTICS OF SPECIALCARE UNITS

Existing special care units are extremely diverse.Descriptive studies show that special care units vary

in the number of residents they serve, their patientcare philosophies and goals, physical design andother environmental features, staff composition andtraining, staff-to-resident ratios, provision of staffsupport groups, activity programs, programs forfamilies, use of psychotropic and other medications,use of physical restraints, admission and dischargepolicies and practices, and cost. Findings in each ofthese areas are discussed in the following sections.

Each of the descriptive studies listed in tables3-la, 3-lb, and 3-lc provides some informationabout the characteristics of existing special careunits. The four nursing home surveys that haveincluded questions about special care units (see table3-la) provide information about certain characteris-tics of the units. With the exception of the 1990survey of all nursing homes in five northeasternStates (194), however, these nursing home surveyshave included very few questions about special careunits, beyond asking whether the facility has such aunit.

The seven studies that compare selected specialcare units (see table 3-lb) provide much morecomprehensive information about the units. Thefindings of these studies are particularly useful inpointing out the diversity of existing units. On theother hand, none of the studies used a random

sample of special care units, so their findings withrespect to the proportion of units with certaincharacteristics are less useful. Even the findings ofstudies with large sample sizes, e.g., White andKwon’s findings based on a sample of 99 specialcare units (492), cannot be generalized to all specialcare units since they are based on nonrandomsamples.

The five studies that compare selected specialcare units and selected nonspecialized nursing homeunits (see table 3-lc) are useful in identifyingcharacteristics that distinguish the two types ofunits. Three of these studies have very small samples(1 to 2 special care units and 1 to 4 nonspecializedunits) (256,292,391). The other two studies havemuch larger samples (382,413). The study done byresearchers at the University of North Carolina isespecially valuable because the special care unitswere randomly selected from all special care units inthe five States studied (413).

Number of Residents

It is often said that nursing home residents withdementia can be better cared for in small rather thanlarge groups, and some commentators have sug-gested 8 to 20 residents may be ideal (63,93,109).Studies of nonrandom samples of special care unitsshow the number of residents in individual unitsvaries greatly. The 16 special care units studied byOhta and Ohta had from 10 to 49 residents (332).The 7 special care units studied by Hyde had from 12to 41 residents (199), and the 12 special care unitsstudied by Mace and Coons had from 8 to 47residents (275). Although these ranges are wide,some of the units clearly had a very small number ofresidents (8 to 12 individuals). The 1990 survey ofall nursing homes in 5 northeastern States found thatspecial care units had an average of 37 beds (194).

Data from the University of North Carolina studyof 31 randomly selected special care units and 32matched nonspecialized nursing home units showthat on average the special care units had fewerresidents than the nonspecialized units (36 vs. 59residents, respectively) (413). The special care unitsalso had fewer rooms and a larger proportion ofprivate rooms—i.e. rooms for only one resident.

Age of the Units

Available data indicate most special care unitshave been established since 1983, although a few

Chapter 3--Findings From Descriptive Studies ● 91

units have been in operation much longer. TheMinnesota nursing homes with a special care unit in1986 reported that the units had been in operation foran average of 2 years (181). Likewise, the 31 specialcare units included in the University of NorthCarolina study conducted from 1987 to 1989 hadbeen in operation an average of 4.6 years: the specialcare units in nonprofit facilities had been in opera-tion twice as long as the special care units infor-profit facilities (6 years vs. 3 years, respectively)(413). On the other hand, one of the 31 special careunits in the University of North Carolina study hadbeen in operation for 25 years. Likewise, the samplesof special care units studied by Weiner and Reingoldand White and Kwon each included one unit that hadbeen in operation for 20 years (485,494).

Patient Care Philosophies and Goals

None of the descriptive studies that have used arandom sample of special care units or attempted tosurvey all nursing homes in a given geographic areahas addressed the question of the units’ patient carephilosophies or goals.3 Four studies that usednonrandom samples have addressed this question(64,199,332,485). Based on a nonrandom sample of22 special care units, Weiner and Reingold identi-fied nine goals of the units (485). The nine goals are:

1.

2.

3.

4.5.

6.

7.

8.

to provide a safe, secure, and supportiveenvironment for residents with dementia;to reduce feelings of anxiety and confusionthrough environmental and communicationsupport;to help residents reach or maintain optimallevels of physical and cognitive functioning;to provide holistic patient care;to offer staff members understanding, training,education, and freedom from excessive stress;to recognize that individuals with dementia areentitled to experiences and activities that willenhance the quality of their lives;to recognize that individuals with dementia areautonomous and can expect that their specialneeds and those of their families will be metwith sensitivity and appropriateness;to provide patients with opportunities to suc-ceed, which will build their sense of self--esteem, dignity, and hope, and

9. to improve the environment and community ofnondemented residents of the facility (485).

The number of units that professed each of thesegoals and the mix of goals for individual units wasnot noted in the study report.

Several topologies of special care units have beenproposed based on the units’ philosophy and goals.These topologies point out one facet of the diversityof existing units. From their study of a nonrandomsample of 16 special care units, Ohta and Ohtaidentified three types of special care units based onthe units’ goals: 1) units that have as their primarygoal to meet residents’ physical care needs; 2) unitsthat have as their primary goals to maintain resi-dents’ ability to perform activities of daily living tothe greatest extent possible and to minimize memoryimpairments and behavioral symptoms; and 3) unitsthat have as their primary goal to maintain residents’quality of life, while also maintaining their ability toperform activities of daily living and minimizingtheir memory impairments and behavioral symp-toms (332).

Another typology based on the philosophy andgoals of a nonrandom sample of seven special careunits posited two types of units: 1) units that adopta medical model of care and focus primarily onhygiene and physical aspects of care; and 2) unitsthat focus more on psychosocial aspects of care,including continuity with a resident’s family andprevious life (199). The author of this study alsodistinguished between special care units that have asa goal to maintain their residents’ functioning to thegreatest extent possible, with the expectation thatsome residents’ functioning might improve and, incontrast, special care units that emphasize theprogressive nature of most diseases that causedementia and have as a goal to allow the residents todecline over time with as much comfort and dignityas possible.

Lastly, from their study of a nonrandom sample of13 special care units in Florida, Cairl et al. identifiedtwo types of units: 1) units in which the primary goalwas behavior management-that is, to reduce resi-dent anxiety, wandering, and behavioral symptoms,and 2) units in which the primary goal was tomaximize residents’ functioning while preservingtheir individual dignity (64).

s me 19gI @rge Wmhi.ugton un.iversi~ survey asked whether the special care units or special programs it identified operated uder a differentphilosophy of care from the rest of the facility. The survey responses with respect to this question have not yet been analyzed (246).

328-405 - 92 - 4 QL 3


These topologies are useful in thinking about thedifferences among special care units. It is unclear,however, which of the topologies best represents thedifferences among existing special care units in theirpatient care philosophies and goals. It is also unclearwhether the topologies encompass the full variationin philosophies and goals among existing specialcare unitsare basedunits.

since the studies on which the topologiesused nonrandom samples of special care

Physical Design and OtherEnvironmental Features

As discussed in chapter 1, the literature onspecialized nursing home care for individuals withdementia emphasizes the importance of physicalenvironment in the care of these individuals. Designfeatures and other physical characteristics of anursing home are believed to be important for allresidents, but especially important for residents withdementia. It is said that the more severe an individ-ual’s impairment, the greater the negative effects ofan inappropriate environment and, conversely, thegreater the positive effects of an appropriate envi-ronment (241).

A variety of physical design and other environ-mental features have been proposed for special careunits. Most of these features are intended to compen-sate directly for residents’ cognitive impairments,but some are intended to compensate for physicalimpairments that may exacerbate an individual’sfictional deficits, e.g., reduced visual acuity thatcan interfere with the individual’s perceptions of theenvironment and thus add to his or her confusion.

Some of the design and other environmentalfeatures that have been proposed for special careunits are structural, such as arrangement of resi-dents’ bedrooms around a common, central area andlocation of the nurses’ station to facilitate residentsupervision and staff/resident interaction. Unless aunit is originally constructed with these features,extensive remodeling is required to incorporatethem. Other physical design features, e.g., a safespace for wandering, are more easily added to anexisting facility, but still require some remodeling.A third type of physical design features can beincorporated in an existing facility without anyremodeling. These features include: an alarm orlocking system; environmental cues, such as colorcoding of rooms and corridors to help residents find

their way around the unit; and personal markers,such as a picture of the resident placed near the doorto his or her room.

Available data indicate that most existing specialcare units were not originally constructed as specialcare units and that at least one-fifth were not evenremodeled for this purpose. Of the 31 randomlyselected special care units in the University of NorthCarolina study, 21 percent were originally con-structed as special care units; 59 percent wereremodeled for this purpose; and 21 percent werecreated without either original construction or re-modeling (415). One-fifth of the 99 nonrandomlyselected special care units studied by White andKwon were created without either original construc-tion or remodeling (494). Of the special care unitsidentified by the 1991 George Washington Univer-sity survey, more than half were created withouteither original construction or remodeling (247).Clearly, these types of units cannot incorporatephysical design features that require either originalconstruction or remodeling.

The most frequently used physical design featuresin special care units are alarm systems to alert staffwhen residents try to leave a unit and lockingsystems to stop residents from leaving the unit. The1990 survey of all nursing homes in 5 northeasternStates found 86 percent of special care units and 78percent of cluster units had an alarm system oranother method for securing exits (194). Likewise,among Minnesota nursing homes that had a specialcare unit in 1986,73 percent reported the unit had analarm system, and 41 percent reported the unit waslocked (181).

The 1990 survey of all nursing homes in fivenortheastern States included questions about twoother physical design features: environmental cues,such as color coding of rooms and corridors, andmodifications to the nurses’ station. The surveyfound that 44 percent of the facilities with a specialcare unit were using environmental cues, and 35percent had modified their nurses’ station (194). Ofthe facilities with a cluster unit, 34 percent wereusing environmental cues, and 13 percent hadmodified their nurses’ stations. Thus, although somefacilities had incorporated each of these physicaldesign features, the majority had not.

Findings of descriptive studies based on nonran-dom samples of special care units illustrate thediversity of the units in their physical design features

Chapter 3-Findings From Descriptive Studies . 93

(64,199,332,275,485,494). In their 1985-86 study ofa nonrandom sample of 22 special care units, Weinerand Reingold found, for example, that 40 percent ofthe units were using orientation aids, such as largecalendars and daily schedules; by implication, 60percent were not (485). Twenty-seven percent of theunits had increased the communal space on the unit;23 percent had color-coded corridors and furniture;15 percent had an outside garden or walkway; and 4percent had small areas for group activities. Byimplication, the other units had not incorporatedthese design features. Only two of the units hadeliminated their public address system (485).

White and Kwon found similar diversity in theirsurvey of a nonrandom sample of 99 special careunits in 34 States (494). Installation of a securitysystem and creation of a safe outdoor area were thephysical changes reported by the largest proportionof the survey respondents. These two changes werealso reported to be the most successful of theenvironmental changes made in creating the units.Still, these changes were made by less than half theunits (44 percent and 32 percent, respectively) (493).Likewise, although 70 percent of the units reportedusing personal markers, such as a resident’s picturenear the resident’s room, smaller proportions of theunits (12 to 41 percent, depending on the method)reported using any of the environmental cueingmethods listed in the survey questionnaire (492).

White and Kwon included in their survey ques-tionnaire a list of 13 environmental features consid-ered by the researchers to be important for the safetyof special care unit residents (494):

1.2.3.4.5.6.7.8.9.

10.

11.12.

13.

housekeeping chemicals are secured,breakable items are kept from residents,clutter is minimized,housekeeping carts are secured,patients smoke only with supervision,outdoor exits can be opened but have alarms,patients smoke only in designated areas,exits have automatic fire unlocks,stairs and elevators have alarms or are other-wise secured,wide-angle mirrors or video cameras are usedto monitor residents,interior exits are disguised,patients wear sensors that activate an alarm,andhalf doors or clutch doors are used (493).

The proportion of special care units that reportedhaving these features ranged from 96 percent forhousekeeping chemicals are secured to 18 percentfor half doors or clutch doors are used (493).

For their study of 31 randomly selected specialcare units and 32 matched nonspecialized units,Sloane et al. used a list of 12 environmental featuresthey considered important in the care of nursinghome residents with dementia:

1.2.3.

4.

5.6.

7.

8.

9.

10.11.

12.

absence of shiny or slippery floors,absence of loud, distracting noise,absence of odors coming from cleaningsolutions,absence of odors coming from bodily excre-tions,absence of glare from the floors,presence of personal items in residents’rooms,presence of home-like furnishings in publicareas,presence of an outdoor area or courtyardaccessible to residents,availability of separate rooms or alcoves forsmall group and family interactions,availability of a kitchen for resident use,absence of routine television use in the mainpublic area, andoverall adequacy of the lighting level (413).

The study findings show there were no significantdifferences between special care units and nonspe-cialized nursing home units for seven of theseenvironmental features, but five of the features werestatistically more likely to be found in special careunits than in nonspecialized units (413). These fivefeatures are the amount of personal items seen inresidents’ rooms, the amount of home-like furnish-ings in public areas, the existence of areas suitablefor small group interaction, the availability of akitchen for residents’ use, and the probability ofhaving a television off in public areas. New specialcare units and units originally constructed as specialcare units were more likely than other special careunits to incorporate the 12 features.

Some people who are knowledgeable about thecare of nursing home residents with dementia mightquestion the specific environmental features se-lected for analysis in these two studies and argue thatother environmental features are more important forresidents’ safety and care. Other people might arguemany of the environmental features on the two lists

94 ● Special Care Units fire- People With Alzheimer’s and Other Dementias

are important for the safety and care of bothdemented and nondemented nursing home residentsand thus are not specific for special care units. Infact, researchers who have conducted descriptivestudies of special care units have commented on thedifferences of opinion among special care unitoperators about which environmental features areimportant for the safety and care of individuals withdementia (199,275,332).

It is clear from the preceding discussion that useof specific physical design and other environmentalfeatures varies in existing special care units. It is alsoclear that despite the emphasis on environmentalfeatures in the special care unit literature, even themost widely used of the features-alarm and lockingsystems—are present in only three-quarters of allunits, and many of the environmental features saidto be important in the special care unit literature arebeing used in only a small proportion of existingspecial care units. According to the researchers whostudied Minnesota nursing homes with a special careunit in 1986, the nursing homes seemed to have paidvery little attention to environmental or designconsiderations for the units (181).

Staff Composition and Training

The literature on specialized nursing home carefor people with dementia emphasizes the need forstaff members who are knowledgeable about demen-tia and skilled in caring for individuals with demen-tia. In fact, one of the frequently cited arguments infavor of establishing special care units is that staffmembers with the necessary knowledge and skillscan be more easily assembled and trained on aspecial care unit than on a nonspecialized nursinghome unit (263,270,354). In theory at least, staffmembers for a special care unit can be selectedspecifically to meet the needs of residents withdementia; formal and informal training can befocused on these residents’ needs, rather than themore heterogeneous needs of residents of nonspe-cialized units; and training about the care ofresidents with dementia can be targeted to thespecial care unit staff members.

Little information is available about the types ofstaff on existing special care units. Some nursinghomes with a special care unit report having addedstaff, changed the composition of the staff, and/orchanged staffing patterns when the unit was created.The 1990 survey of all nursing homes in 5 northeast-

ern States found 69 percent of the facilities with aspecial care unit reported providing extra nursingstaff for the unit, and 45 percent reported providingadditional staff of other, unspecified types (194). Ofthe facilities with a cluster unit, 40 percent reportedproviding extra nursing staff for the unit, and 30percent reported providing additional staff of other,unspecified types. Among the Minnesota nursinghomes with a special care unit in 1986, 59 percentreported the staffing pattern on the unit was differentthan the staffing patterns on their nonspecializedunits (18 1), but the differences were not described inthe study report.

Several descriptive studies of nonrandom samplesof special care units have noted the followingstaffing changes that have been implemented in oneor more of the units studied:

●

●

●

●

●

●

nurses and aides are not rotated to other units;aides are assigned fewer patients but haveresponsibility for more aspects of their pa-tients’ care;aides conduct activity programs;social workers’ and recreation workers’ officesare located on the unit;part-time assistants are hired for the eveningshift to feed patients and help out at bedtime;a ‘‘clinical coordinator’ is designated to de-velop new programs, educate staff, and marketthe units (64,275,332,485).

OTA is not aware of any information about theproportion of existing special care units that haveimplemented any of these staffing changes.

Most—but not all-nursing homes with a specialcare unit provide some type of specialized trainingfor the unit staff. According to the National MedicalExpenditure Survey, 74 percent of nursing homesthat reported having a special care unit in 1987 alsoreported providing special training for the unit staff(248). Nonprofit and public nursing homes andlarger nursing homes were more likely than for-profit nursing homes and smaller nursing homes toreport providing such training. The 1990 survey ofall nursing homes in 5 northeastern States found 70percent of the facilities with a special care unit and53 percent of the facilities with a cluster unitreported providing special training for the unit staff(194).

Given the emphasis on the need for staff memberswho are knowledgeable about dementia and skilled

Chapter 3-Findings From Descriptive Studies • 95

in caring for individuals with dementia, the propor-tions of nursing homes in these two studies thatreported they do not provide any special training forthe staff of their special care units are surprising.Data from the National Medical Expenditure Survey—a survey of a nationally representative sample ofnursing homes—indicate 26 percent of the nursinghomes that reported having a special care unit in1987 did not provide any special training for the unitstaff (248). Likewise, the 1990 survey of all nursinghomes in 5 northeastern States found that 30 percentof the nursing homes with a special care unit and 47percent of the nursing homes with a cluster unitreported they did not provide special training for theunit staff (194). These figures are particularlysurprising since they are based on self-report, and itis unlikely nursing homes would underreport theprovision of training for their staff.

Staff-to-Resident Ratios

As noted earlier, the 1990 survey of all nursinghomes in 5 northeastern States found that 69 percentof the facilities with a special care unit and 40percent of the facilities with a cluster unit reportedproviding extra nursing staff for the unit (194).Likewise, 45 percent of the facilities with a specialcare unit and 30 percent of the facilities with acluster unit reported providing additional staff ofother, unspecified types. Descriptive studies ofnonrandom samples of special care units have alsofound that some of the units added staff (275,332);nevertheless, staff-to-resident ratios varied greatlyfrom one unit to another.

The University of North Carolina study of 31randomly selected special care units and 32 matchednonspecialized units found the special care unitswere staffed at a higher level than the nonspecializedunits (291). This difference was statistically signifi-cant for nurses, social workers, and activities staffand approached statistical significance for nurseaides. After adjusting for the relative severity ofillness of residents of the two types of units, theresearchers concluded that the special care unitsprovided about one-third more hours of nursing careper resident than the nonspecialized units (415).

Staff Support Groups

Working with nursing home residents with de-mentia is often said to be very stressful for the staff(48,107,167,191,263,346,352). To address the per-ceived problem of staff stress, some special care

units provide a support group for the unit staffmembers. The 1990 survey of all nursing homes in5 northeastern States found that 44 percent of thenursing homes with a special care unit and 18percent of the nursing homes with a cluster unitreported having such a support group (194). Incontrast, only one of the Minnesota nursing homeswith a special care unit in 1986 reported having asupport group for the unit staff; two additionalfacilities reported having stress reduction programsfor the special care unit staff (181).

Activity Programs

One of the frequently cited complaints about thecare provided for individuals with dementia in mostnursing homes is the lack of appropriate activities,including adequate physical exercise. Descriptivestudies of nonrandom samples of special care unitsindicate the units provide a great variety of activityprograms intended to increase stimulation, reduceidleness and stress, and respond to and maintainresidents’ interests. These programs include singing,dancing, exercises, painting, crafts, games, parties,pet therapy, field trips, reality orientation, sensoryand cognitive stimulation, reminiscence therapy,religious services, housekeeping, cooking, garden-ing, and sheltered workshop activities (64,275,485,494). Weiner and Reingold found physical exercise(including walks, dance exercise, and wheelchairexercise) and music therapy were the activityprograms provided by the largest proportions of thespecial care units they studied (84 percent and 58percent, respectively); 42 percent of the units theystudied provided reality orientation, and the sameproportion said they provided sensory stimulation.Other types of activity programs were provided bysmaller proportions of the special care units (485).

The University of North Carolina study of 31randomly selected special care units and 32 matchednonspecialized units found virtually no difference inthe proportion of units that reported providingactivity programs for their residents: 90 percent ofthe special care units and 91 percent of the nonspe-cialized units reported providing such programs(290). Information about the particular types ofactivity programs they provided was not collected,except for reality orientation, which was provided byall the special care units and 97 percent of thenonspecialized units, and reminiscence therapy,which was provided by 90 percent of the special careunits and 87 percent of the nonspecialized units. The


1990 survey of all nursing homes in 5 northeasternStates found 79 percent of the special care units and74 percent of the cluster units reported providingreality orientation or cognitive stimulation (194).OTA is not aware of other available data on theproportion of special care units that provide particu-lar types of activity programs. The 1991 GeorgeWashington University survey included questionsabout reality orientation and recreational therapy,but the survey responses for these questions have notyet been analyzed (246).

Programs for Families

Another frequently cited complaint about the careprovided for individuals with dementia in mostnursing homes is that the needs of the residents’families are not met. Descriptive studies of nonran-dom samples of special care units indicate manyunits have special programs to involve, inform, andsupport residents’ families (64,485,494). Weinerand Reingold found, for example, that 82 percent ofthe 22 special care units they studied had a familysupport group (485). Figures from these studiescannot be generalized to all special care unitsbecause they are based on nonmndom samples.

The University of North Carolina study of 31randomly selected special care units and 32 matchednonspecialized units found the special care unitswere somewhat more likely than the nonspecializedunits to provide special programs for families, butthis difference was not statistically significant (413).The 1990 survey of all nursing homes in 5 northeast-ern States found 59 percent of the facilities with aspecial care unit and 35 percent of the facilities witha cluster unit had a support group for residents’families (194).

Use of Psychotropic Drugs andOther Medications

As discussed in chapter 2, nursing home residentswith dementia are very likely to receive psy-chotropic medications, sometimes to control behav-ioral symptoms which might be more appropriatelymanaged in other ways. One frequently statedobjective of special care units is to reduce use ofpsychotropic medications and substitute other meth-ods for managing residents’ behavioral symptoms.

Descriptive studies indicate special care unitresidents are as likely or more likely than individualswith dementia in nonspecialized nursing home units

to receive psychotropic medications. Two smallstudies that each compared one or two special careunits and two nonspecialized nursing home unitsfound that a larger proportion of the special care unitresidents than the demented residents in nonspecial-ized units received psychotropic medications (256,298). The University of North Carolina study of 31randomly selected special care units and 32 matchednonspecialized nursing home units found no signifi-cant difference between the 2 types of units in theiruse of psychotropic medications (413).

In contrast to the use of psychotropic medications,the use of medications of all types appears to belower in special care units than in nonspecializednursing home units. The University of North Caro-lina study of 31 randomly selected special care unitsand 32 matched, nonspecialized nursing home unitsfound the special care unit residents received signif-icantly fewer medications of all types than residentswith dementia in the nonspecialized units (413).Likewise, a pilot study that compared 19 residentswith dementia in one special care unit and 20residents with dementia in nonspecialized units ofthe same nursing home found the special care unitresidents were receiving fewer medications of alltypes (391).

The lower use of medications of all types onspecial care units may reflect differences in thecharacteristics of the residents. As discussed later inthis chapter, the findings of several descriptivestudies suggest that residents of special care unitsmay have fewer medical conditions than othernursing home residents with dementia (292,382,413);as a result, they may have less need for medicationsof all types. In addition or instead, the lower use ofmedications of all types on special care units mayreflect deliberate efforts by physicians who treatspecial care unit residents to reduce medication use,perhaps in recognition of the deleterious effects oncognition of many types of medications. The avail-able data do not allow one to choose between thesetwo explanations or other possible explanations.

Use of Physical Restraints

As discussed in chapter 2, nursing home residentswith dementia are often physically restrained, andreduced use of physical restraints is a frequentlystated objective of special care units. Descriptivestudies show use of physical restraints is much lowerin special care units than in nonspecialized nursing


home units (256,292,391,413). The University ofNorth Carolina study found that only 16 percent ofthe special care unit residents were restrained,compared with 36 percent of the residents withdementia on the nonspecialized units (413).

In theory, lower use of physical restraints inspecial care units could reflect differences in thecharacteristics of the residents; that is, if special careunit residents exhibit fewer behavioral symptomsthan other nursing home residents with dementia,special care unit residents may be less likely to bephysically restrained. This explanation is probablynot true, since, as discussed later in this chapter,special care unit residents generally exhibit as manyor more behavioral symptoms than other nursinghome residents with dementia. A more likelyexplanation for the lower use of physical restraintsin special care units is a deliberate effort by unitoperators and staff members to substitute othermethods of managing residents’ behavioral symp-toms. Another possible explanation is that specialcare unit residents are perceived by staff members asless physically frail and therefore less likely to fallthan other nursing home residents with dementia,and as a result, special care unit residents are lesslikely to be restrained. Available data do not allowone to choose between the latter two explanations orother possible explanations.

Admission and Discharge Policiesand Practices

Some existing special care units have formaladmission and discharge policies, and others do not.The 1990 survey of all nursing homes in 5 northeast-ern States found that 43 percent of the facilities witha special care unit and 19 percent of the facilitieswith a cluster unit reported having formal, writtenadmission criteria for the unit (194). Twenty-eightpercent of the facilities with a special care unit and20 percent of the facilities with a cluster unitreported having formal, written discharge criteria(194). Eight of the 13 special care units in thenonrandom sample of units studied by Cairl et al.reported having formal admission policies, and 3 ofthe 13 units reported having formal dischargepolicies (64).

Regardless of whether they have formal admis-sion and discharge policies, special care units varygreatly in their admission and discharge practices.The University of North Carolina study of 31

randomly selected special care units found 40percent of the units primarily admitted individualswho had been living in other parts of the nursinghome; the remaining 60 percent primarily admittedindividuals who had been living outside the facility(413). Weiner and Reingold found that two-thirds ofthe 22 nonrandomly selected special care’ units theystudied admitted primarily individuals who had beenliving in other parts of the facility (485).

In response to the 1990 study of all nursing homesin five northeastern States, facilities with a specialcare unit reported using several criteria to select unitresidents. The criteria and the proportion of facilitiesthat reported using them areas follows: 1) the degreeof an individual’s dementia (85 percent); 2) theindividual’s need for supervision (73 percent); 3) theindividual’s behavioral symptoms (79 percent); 4)the individual’s limitations in activities of dailyliving (51 percent); and 5) the individual’s ability toambulate independently (38 percent) (194). Fornursing homes with a cluster unit, the correspondingfigures are: 1) the degree of an individual’s dementia(81 percent); 2) the individual’s need for supervision(78 percent); 3) the individual’s behavioral symp-toms (64 percent); 4) the individual’s limitations inactivities of daily living (57 percent); and 5) theindividual’s ability to ambulate independently (44percent). Most of the nursing homes reported theygenerally seek individuals with more, rather thanless, severe dementia (194). Only 12 percent re-ported they generally seek individuals with lesssevere dementia. Likewise, about 40 percent of thenursing homes reported they generally seek individ-uals with more severe behavioral symptoms, andonly 15 to 18 percent reported they generally seekindividuals with less severe behavioral symptoms.

Table 3-3 presents data from the University ofNorth Carolina study with respect to the proportionof special care units that encourage or discourageadmission of individuals with eight types of symp-toms. Most of the units reported that they encourageadmission of individuals with confusion, wandering,and agitation (413). Most reported that they discour-age admission of individuals who are physicallyabusive or unable to walk independently.

Reported admission practices may or may notreflect actual admission practices in special careunits. Data from the Multi-State Nursing Home CaseMix and Quality Demonstration, a 5-year congres-sionally mandated study, suggest the major factor


Table 3-3—Proportion of Special Care Units ThatEncouraged or Discouraged Admission of Residents

With Certain Problems

Problem

Confusion

Wandering

Agitation

Verbal abusiveness

Physical abusiveness

Urinary incontinence

Unable to walk

Feeding problems

encouraged . . . . . . . . . . . . . .neither . . . . . . . . . . . . . . . . . . .discouraged . . . . . . . . . . . . .








93%70

8713

05340

7

275717

73559

3063

7

102763176717

SOURCE: P.D. Sloane, L.J. Mathew, J.R. Desai, et al., “SpecializedDementia Units in Nursing Homes: A Study of Settirigs in FiveStates,” University of North Carolina, Chapel Hill, NC, March1990.

distinguishing special care unit residents and resi-dents with dementia in nonspecialized nursing homeunits is the severity of their physical impairments(382). Among a subsample of 127 residents of 10special care units and 103 residents with dementia in10 nonspecialized units in the same nursing homes,the special care unit residents were significantly lesslikely to have severe limitations in activities of dailyliving or severe physical impairments. Once otherstudy variables were controlled, the two groups didnot differ significantly with respect to behavioralsymptoms, including wandering and verbal andphysical abusiveness.

Some special care units admit individuals with theexpectation that the individuals will remain on theunit until they die, whereas other units admitindividuals with the expectation that they will bedischarged from the unit at some time prior to death.All but one of the 22 Minnesota nursing homes thathad a special care unit in 1986 reported theyadmitted individuals with the expectation that theindividuals would remain on the unit until they died(181). According to the 1990 study of all nursing

homes in 5 northeastern States, about half thenursing homes with a special care unit and 60percent of the nursing homes with a cluster unitreported they seldom discharge residents of the unitor cluster prior to their death (194).

Among special care units that do dischargeresidents prior to their death, the reasons fordischarge vary. In their study of 99 nonrandomlyselected special care units, White and Kwon foundthe two most frequently cited reasons for discharg-ing residents from the units were: 1) that theresidents had become nonresponsive (cited by 70percent of the survey respondents), and 2) that theresidents were combative, violent, or harmful to selfor others (cited by 63 percent of the units). One-thirdof the units reported discharging residents whobecame unable to ambulate, and 14 percent reporteddischarging residents when the residents’ privatefunds were exhausted (492). Weiner and Reingoldcite similar reasons for discharge (485).

The 1990 study of all nursing homes in 5northeastern States indicate 45 percent of the nurs-ing homes with a special care unit or a cluster unitreported they discharge residents who need inten-sive medical care (194). Twenty-one percent re-ported they discharge residents who need tubefeeding, and a few of the nursing homes (10 percentor less) reported they discharge residents who havesevere decubitus ulcers, contractures, or recurringurinary tract infections.

Costs, Charges, and Payment Methods

Very little information is available about the costof special care units. The cost obviously variesamong units, depending on the cost of any newconstruction, renovation, or other physical changesto a unit and ongoing operating costs. Respondentsto one survey of a nonrandom sample of 12 specialcare units reported new construction and renovationcosts ranging from $4100 to $150,000 (275). Cameronet al. reported initial costs of only $1300, whichcovered the cost of an alarm system, color coding,and other physical changes made to create a specialcare unit (70).

Some special care unit operators and others sayongoing operating costs are higher for special careunits than for nonspecialized nursing home units.One-third of the respondents in Weiner and Rein-gold’s study of a nonrandom sample of 22 specialcare units cited higher costs associated with opera-

Chapter 3-Findings From Descriptive Studies . 99

tion of the unit, whereas the other two-thirds did not(485). Of the 13 special care units in Florida studiedby Cairl et al., 7 reported higher operating costs forthe special care unit than for nonspecialized units inthe same facility; 5 reported no difference inoperating costs, and 1 reported lower operating costs(64). Two studies of individual special care unitsfound no difference in operating costs between thespecial care units they studied and nonspecializedunits in the same facilities (70,265).

The Multi-State Nursing Home Case Mix andQuality Demonstration, a 5-year congressionallymandated study that included 20 special care units,found that on average the amount of staff time spentcaring for residents with dementia was greater in thespecial care units than in the nonspecialized units inthe study sample (143). As noted earlier, theUniversity of North Carolina study of 31 randomlyselected special care units and 32 nonspecializednursing home units in 5 States had similar findings(413). The greater amount of staff time spent caringfor special care unit residents translates into higheraverage operating costs in the special care units.

Citing higher operating costs, some nursing homescharge more for care in their special care unit than intheir nonspecialized units. To OTA’s knowledge, nopublic program currently pays more for care of anindividual in a special care unit than in a nonspecial-ized nursing home unit. Thus, it is only private-payresidents who may be charged more for care in aspecial care unit than they would be charged in anonspecialized unit in the same facility.

Compared with nonspecialized units, special careunits generally have a higher proportion of private-pay residents (292,413,477). The University ofNorth Carolina study of 31 randomly selectedspecial care units and 32 matched nonspecializedunits found, for example, that 60 percent of thespecial care unit residents were private-pay, com-pared with 30 percent of the residents of thenonspecialized units (413). Six of the 31 special careunits did not accept Medicaid payment at all.

The University of North Carolina study found that79 percent of the special care units in the studysample charged private-pay residents more for carein the special care unit than the residents would havebeen charged in a nonspecialized unit in the samefacility (415). The excess charge varied from oneunit to another and from State to State. The meanexcess charge ranged from $3.17 a day in intermedi-

ate care facilities (ICFs) in Ohio to $19.75 a day inskilled nursing facilities (SNFs) in California.

Preliminary data from the 1991 George Washing-ton University survey of all special care unitsnationwide indicate about half of the units chargedprivate-pay residents more in the special care unitthan the residents would have been charged in anonspecialized unit in the same facility (246). Theexcess charge averaged $9.24 a day and ranged from$1 to $83 a day.

Lastly, a small pilot study that compared monthlycharges for care in two nursing home special careunits and two nonspecialized nursing home units inCalifornia found the special care units charged theirresidents an average of $3196 per month, whereasthe nonspecialized units charged their residents anaverage of $2803 per month (256).

DESCRIPTIVE TOPOLOGIES OFSPECIAL CARE UNITS

Several topologies of special care units have beendeveloped based on information from descriptivestudies. Three topologies based on informationabout unit goals were discussed earlier in thischapter. OTA is aware of three other descriptivetopologies based on information about a variety ofunit characteristics. One of the topologies is basedon information about 13 of the 31 VA special careunits identified by the 1989 VA survey discussedearlier in this chapter. This typology reflects differ-ences among the units in their goals and the typicallength of stay in the unit (103). On the basis of thesedifferences, three types of units were identified. Onetype of unit has a relatively short length of stay andfocuses primarily on diagnosis, short-term behav-ioral stabilization, and discharge placement. Asecond type of unit has an intermediate length of stayand focuses on behavioral management and dis-charge placement. The third type of unit has a moreextended length of stay and focuses primarily onlong-term supportive care.

A second typology is based on information abouta nonrandom sample of 13 special care units in a10-county area of west central Florida (64). Thistypology reflects differences among the units in 13characteristics: their origin and philosophy, motivesfor development, level of commitment, target popu-lation, policies and procedures, admission anddischarge criteria, assessment and followup, physi-


Table 3-4-Ratings on Some Variables for Eight Types of Special Care Units

Staff withspecialized Staff Administrative

Cleanliness of training Staff/patient Staff attitudes stress Administrative attitudesType public areas Odors in dementia interaction toward patients level philosophy toward patients

Ideal . . . . . . . . . . . . . . . . High No Yes High Caring Low Therapeutic CaringUncultivated . . . . . . . . . High No Yes High Caring High Maintenance ApatheticHeart of gold . . . . . . . . . Low No Yes High Caring High Therapeutic CaringRotten at the core . . . . High No No Low Apathetic Low Maintenance ApatheticInstitutional . . . . . . . . . . High Yes No High Caring Low Maintenance CaringLimited . . . . . . . . . . . . . . Low Yes No Low Apathetic Low Therapeutic CaringConventional . . . . . . . . Low Yes No Low Caring High Maintenanca ApatheticExecrable . . . . . . . . . . . Low Yes No Low Apathetic Low Maintenance Apathetic

SOURCE: D.T. Gold, P.D. Sloane, L.J. Mathew, et al., “Special Care Units: A Typology of Care Settings for Memory-lmpaired Older Adults,” Gerontologist-.31(4):470, 1991,

cal environment, activity programs, staffing pat-terns, staff training, family involvement, and effortsto evaluate the impact of the unit. Based ondifferences among the units in these 13 character-istics, the researchers identified three types of unitsthat, in their view, reflect the extent to which theunits were tailored for individuals with dementia:“highly specific” units, “moderately specific”units, and ‘‘minimally specific’ units.

A third descriptive typology is based on thefindings of the University of North Carolina study of31 randomly selected special care units and 32matched nonspecialized nursing home units in 5States. This typology was derived from an analysisof narrative accounts dictated by an investigator whovisited each of the units (154). These narrativeaccounts were available for 28 of the 31 special careunits and 27 of the 32 nonspecialized units. The unitcharacteristics used in the development of thetypology include: appearance of the units’ publicarea, general maintenance, cleanliness, unit layout,presence of an activity room, decoration of thepublic areas (institutional or home-like), noise level,odor, ambiance (depressing or cheerful), size of thefacility for the population (crowded or uncrowded),resident living arrangements (shared or private),resident appearance (ill-groomed or well-groomed),resident location during the day (in their rooms or inthe public areas), resident activity level, residentwandering, use of physical restraints, use of psy-chotropic medications, presence of an activity direc-tor, staff relations with the administration, staffstress level, staff training in dementia, staff attitudetoward residents (apathetic or caring), staff/residentinteraction (high or low), administrative philosophy(maintenance or therapeutic), admission criteria (laxor strict), the administration’s attitude toward theresidents (apathetic or caring), and involvement of

the administration in resident care. Based on differ-ences among the units in these characteristics, theresearchers identified eight types of units: “ideal,uncultivated, heart of gold, rotten at the core,institutional, limited, conventional, and execrable. ’Table 3-4 shows the ratings of each of the types foreight of the characteristics.

The typology based on information from theUniversity of North Carolina study reflects thecharacteristics of the special care units and thenonspecialized units in the study sample (154). Theresearchers found a larger proportion of the specialcare units in the study sample were in the positivetypes: 43 percent of the special care units were in the‘‘ideal” type; 11 percent were in the ‘uncultivated”type, and 4 percent were in the “heart of gold” type.In contrast, none of the nonspecialized units were inthe ‘ideal’ or ‘uncultivated’ types, and 15 percentwere in the ‘heart of gold’ type. None of the specialcare units were in two of the negative types,“conventional” and “execrable,” and only 7 per-cent of the special care units were in the ‘‘rotten atthe core” type. Of the nonspecialized units, 7percent were in the “conventional” type; 11 percentwere in the “execrable” type, and 15 percent werein the ‘rotten at the core’ type. Thus the special careunits seem, in general, to be providing better carethan the nonspecialized units for their residents withdementia.

As noted earlier, topologies are useful in thinkingabout differences among special care units, althoughit is unclear whether topologies based on nonrandomsamples, such as the typology based on informationabout the 13 special care units in Florida, encompassthe full variation among existing special care units.The typology based on information from the Univer-sity of North Carolina study does not suffer from thispotential drawback because that study included a


random sample of special care units. On the otherhand, the latter typology is based on an analysis ofnonquantitative observations by three individuals,one of whom visited each of the units once. Thevalidity of these individuals’ observations cannot bedetermined. The process by which their observationswere combined to create the typology also raisesmethodological questions.

Both topologies imply that certain types of specialcare units are more appropriate than other types ofspecial care units for nursing home residents withdementia. Some of the unit characteristics on whichthe topologies are based are not specific for individ-uals with dementia, however. With respect to the‘‘execrable’ units, for example, the researchers say:

The administrators of execrable units are apa-thetic, have weak authority over staff, and areunresponsive either to patient complaints or staffdifficulties. Their lax admissions criteria result in theunits being filled with patients who are inappropriatefor an intermediate care facility. Rather than screenout behavior problems or serious physical comorbid-ity, directors of execrable units encourage recruit-ment of any potential patient. Each bed occupiedmeans reimbursement (154).

Clearly, the care provided by these “execrable”units would be inappropriate for nondemented aswell as demented nursing home residents.

Although it is obvious poor-quality care is notappropriate for any nursing home resident, there isvery little evidence that any specific characteristic ofnursing home units is associated with better residentoutcomes. The available studies with respect to thisissue are discussed in chapter 4. Without someevidence of improved outcomes, it cannot be saidwith certainty that any particular type of nursinghome unit is more appropriate for individuals withdementia, except in the sense that units that providepoor-quality care which would be inappropriate forany resident are, by definition, providing inappropri-ate care for residents with dementia.

CHARACTERISTICS OF SPECIALCARE UNIT RESIDENTS

Many reports on individual special care unitsdescribe residents of a particular unit, but littleresearch-based information is available about char-acteristics of special care unit residents or about theways, if any, in which these residents differ fromother nursing home residents. A few descriptive

studies provide information about residents of thespecial care units they studied, and five studiescompare the characteristics of special care unitresidents and residents with dementia in nonspecial-ized nursing home units (see table 3-lc). TheUniversity of North Carolina study of 31 randomlyselected special care units and 32 matched nonspe-cialized units compared some characteristics ofspecial care unit residents with the characteristics ofnursing home residents in general (413). Several ofthe evaluative studies discussed in chapter 4 alsoprovide comparative information about the baselinecharacteristics of their subjects (special care unitresidents and residents with dementia in the nonspe-cialized nursing home units). This section summa-rizes the findings of all of these studies.

Descriptive studies show that on average specialcare unit residents are younger than other dementedand nondemented nursing home residents (256,292,391,413). Special care units residents are also morelikely than other demented and nondemented nurs-ing home residents to be white and male (256,292,413,492).

Special care units admit individuals with a varietyof dementia-related diagnoses, the most commonbeing Alzheimer’s disease (275,292,391,413). Resi-dents of special care units are much more likely thanresidents with dementia in nonspecialized units tohave a specific diagnosis, such as Alzheimer’sdisease, rather than a more general diagnosis, suchas senility or organic brain syndrome (99,292,391,413). Not all special care unit residents have adementia diagnosis, however. Some special careunits admit individuals who have behavioral symp-toms but no diagnosis of a dementing illness (64).

The University of North Carolina study of 31randomly selected special care units and 32 matchednonspecialized nursing home units found that onaverage the special care unit residents were moreseverely cognitively impaired than residents of thenonspecialized units, even though all the individualsin the study sample had a dementia diagnosis (413).This difference in the average severity of residents’cognitive impairment was due to the presence on thenonspecialized units of some residents with little orno cognitive impairment despite their dementiadiagnosis. Two evaluative studies discussed inchapter 4 also found the special care unit residents intheir study samples were significantly more cogni-tively impaired than residents with dementia in the


Table 3-5—lmpairments in Activities of Daily Living Among Special Care UnitResidents, Residents With Dementia in Nonspecialized Nursing Home Units,

and All Nursing Home Residents

Residents withSpecial care dementia in nonspecialized All nursing home

Functional impairment unit residents nursing home units residents

Needs help with dressing . . . . . . . . . . . 81%. 93% 89%Needs help with getting out of bed . . 45 78 71Needs help with ambulating . . . . . . . . 30 60 54Incontinent . . . . . . . . . . . . . . . . . . . . . . . . 69 84 71SOURCE: P.D. Sloane, L.J. Mathew, M. Scarborough, et al., “Physical and Pharmacologic Restraint of Nursing Home

Patients With Dementia: Impact of Specialized Units,” Journa/ of the American Medical Association265(10):1260, 1991.

nonspecialized units studied (99,195). On the otherhand, two descriptive studies with small samplesfound no significant difference in the severity ofcognitive impairment between individuals withdementia on special care units and on nonspecializedunits (256,292).

With respect to coexisting medical conditions, theUniversity of North Carolina study found the specialcare unit residents were less likely than residents ofthe nonspecialized nursing home units to have ahistory of stroke, hip fracture, or other fractures(413). The special care unit residents were signifi-cantly more likely to be ambulatory and to be takingfewer medications of all types, thus suggesting theymay have fewer medical conditions than the resi-dents with dementia on the nonspecialized units. Anearlier study that compared one special care unitwith two nonspecialized nursing home units foundthe special care unit residents had significantlyfewer medical diagnoses than the residents of thenonspecialized units (292). Data from the Multi-State Nursing Home Case Mix and Quality Demon-stration show that the residents of 10 special careunits in the study sample were significantly lesslikely than the residents with dementia in nonspe-cialized units in the same nursing homes to have adiagnosis of stroke or diabetes (382). The specialcare unit residents were somewhat less likely to havea diagnosis of congestive heart failure or chronicobstructive pulmonary disease, but these differenceswere not statistically significant, and the differencewith respect to diabetes was no longer significantwhen other study variables were controlled. Twoother studies found no difference in the presence ofspecific medical conditions, the average number ofmedical conditions per resident, or the averagenumber of medications per resident (99,391).

Several studies indicate special care unit residentsare less likely than other nursing home residents

with dementia to have impairments in activities ofdaily living (99,256,413). Table 3-5 shows thefindings of the University of North Carolina studywith respect to the proportion of special care unitresidents and individuals with dementia in nonspe-cialized units who were impaired in dressing, gettingout of bed, and continence. These differences werestatistically significant. In contrast, two studies withsmall samples found no significant difference inimpairments in activities of daily living betweenspecial care unit residents and residents with demen-tia in nonspecialized nursing home units (292,391).Data from the Multi-State Nursing Home Case Mixand Quality Demonstration show the residents of 10special care units in the study sample were signifi-cantly more likely than the residents with dementiain nonspecialized units in the same nursing homes tohave impairments on an index of two activities ofdaily living described by the researchers as “earlyloss’ activities (grooming and dressing). In contrast,the special care unit residents were significantly lesslikely to have impairments on an index of four otheractivities of daily living described by the researchersas “late loss” activities (eating, using the toilet,transferring, and bed mobility) (382).

Special care unit residents may be more likely toexhibit behavioral symptoms than individuals withdementia in nonspecialized nursing home units(256,413). The University of North Carolina studyfound a trend for a greater prevalence of behavioralsymptoms among special care unit residents, but thedifferences were not statistically significant (413).An earlier study found no difference in the preva-lence of behavioral symptoms among the residentsof one special care unit and two nonspecializednursing home units (292). Data from the Multi-StateNursing Home Case Mix and Quality Demonstra-tion show that the residents of 10 special care unitsin the study sample were significantly more likely

Chapter 3--Findings From Descriptive Studies . 103

than the residents of nonspecialized units in the samenursing homes to wander and to be verbally andphysically abusive (382). These differences were nolonger significant, however, when other study varia-bles were controlled. Interestingly, the study datashow that the greater likelihood of wandering on thespecial care unit was due to the greater proportion ofresidents in the special care units who were physi-cally capable of wandering.

The University of North Carolina study found thespecial care unit residents were more likely than theindividuals with dementia in nonspecialized nursinghome units to be out of their rooms and to beparticipating in activity programs (413). Threestudies with small sample sizes also found specialcare unit residents were more likely than residents ofnonspecialized units to participate in activity pro-grams (256,292,391).

Lastly, one study that compared 13 residents ofone special care unit and 34 individuals withdementia in 2 nonspecialized nursing home unitsfound the special care unit residents were morelikely to fall (292). This difference was not statisti-cally significant. Several studies discussed in chap-ter 4 also found a higher incidence of falls amongspecial care unit residents than other nursing homeresidents (99,265,497,521). One of these studiesfound special care units residents were more likelythan the residents of nonspecialized units to behospitalized for a hip fracture (99).

Since the studies discussed in this chapter arecross-sectional, it is unclear whether some of thefindings reflect pre-existing characteristics of theresidents and the admission and discharge criteria ofthe units, or on the other hand, the effect of the uniton residents. With respect to participation in activi-ties, for example it is unclear whether special careunits admit individuals who are more likely toparticipate in activities or whether one effect of theunits is to cause greater resident participation inactivities.

CONCLUSIONThe preceding review of findings from the avail-

able descriptive studies of special care units allowssome conclusions to be drawn about the number andcharacteristics of nursing homes with a special careunit, the characteristics of the special care units, andthe characteristics of their residents. Table 3-6 listsOTA’s conclusions in these four areas. Each conclu-

sion is supported by the findings of at least one studythat used a representative sample of nursing homesor surveyed all nursing homes in a given geographicarea. None of the conclusions is contradicted by thefindings of any descriptive study OTA is aware of,including studies with small, nonrandom samples.

The diversity of existing special care units is acommon finding in all special care unit research.Because of this diversity, no single descriptivestatement is true of all special care units forindividuals with dementia, including the statementthat they only serve individuals with dementia. Withrespect to existing units’ philosophies and goals,staffing patterns, physical design features, andactivity programs, diversity is probably the primaryfinding from the available studies.

As noted earlier, one of the difficulties in specialcare unit research is the lack of an accepteddefinition of the term special care unit. Thus far,most descriptive studies of special care units haveused self-report—i.e., the statement of a special careunit operator or another nursing home staff member—to determine which nursing home units are specialcare units. The University of North Carolina studyadded several additional conditions. For that study,a special care unit was defined as follows:

a distinct functional area of a nursing home, or theentire home, which identified itself as a dementiaunit, served primarily dementia residents, and satis-fied at least three of the following conditions: 1)separation from the remainder of the facility byclosed doors; 2) over 50 percent of the staff havingat least a year’s experience with geriatric residents;3) specific staff training in dementia care; and 4) unitactivities being designed with the dementia residentin mind (413).

By defining the term special care unit in aparticular way, researchers necessarily focus on asubset of all facilities that might be considered ormight self-identify as special care units. By doing so,they eliminate some of the diversity that character-izes the full universe of existing special care units.If, for example, the term special care unit is definedfor a particular study as a physically separate part ofthe nursing home that has certain physical designfeatures, such as a safe area for wandering, then allspecial care units in the study sample will, bydefinition, have a safe area for wandering. Asdiscussed in chapter 4, it is unclear what particularphysical design features, if any, are related to


Table 3-6-Conclusions From Descriptive Studies of Special Care Units

Number of Nursing Homes That Have a Special Care Unit

• OTA estimates that in 1991, 10 percent of all nursing homes in the United States had a special care unit. Inat least some States, this figure includes nursing homes that place some of their residents with dementia in“clusters” in units that also serve nondemented residents.

. The proportion of nursing homes that have a special care unit varies in different parts of the country and indifferent States.

. Many nursing homes that do not have a special care unit are planning to establish one, and some nursinghomes that have a special care unit are planning to expand the unit.

Characteristics of Nursing Homes That Have a Special Care Unit

● Larger nursing homes ❁❒❅ more likely than Smaller nursing homes to have a special care unit.● As of late 1987, most nursing homes that had a special care unit were private, for-profit facilities. At that

time, multi-facility nursing home corporations owned about one-third of all the facilities that had a specialcare unit. There is no evidence, however, that ownership of special care units is dominated by a small numberof multi-facility nursing home corporations.

Characteristics of Special Care Units

. Special care units are extremely diverse.• Most special care units have been established since 1983, although a few have been in operation for 20 to

25 years.● The goals of special care units differ. For some units, the primary goal is to maintain residents’ ability to

perform activities of daily living. Other units focus on maintaining residents’ quality of life, eliminatingbehavioral symptoms, or meeting residents’ physical needs.

Ž Most existing special care units were not originally constructed as special care units, and at least one-fifthwere neither originally constructed nor remodeled for this purpose.

• The use of specific physical design and other environmental features varies in existing special care units.Many of the physical design and other environmental features cited as important in the special care unitliterature are used in only a small proportion of special care units.

• The most extensively used environmental feature in special care units is an alarm or locking system, foundin more than three-fourths of existing units.

● On average, special care units probably have fewer residents than nonspecialized nursing home units.

• On average, special care units probably have more staff per resident than nonspecialized nursing home units.

• Although the majority of existing special care units provide special training for the unit staff, at leastone-fourth of existing units do not.


positive outcomes for nursing home residents with residents with dementia in clusters in units that alsodementia. Given that uncertainty, it is probably served nondemented residents (194). The studypremature to exclude for research purposes special found that a significant proportion of these clustercare units that do not have a particular physicaldesign or other feature.

units incorporated features said to be important inspecial care units, although the cluster units were

In this context, it is important to note one of theless likely than the special care units in the study

findings of the 1990 study of all nursing homes in States to incorporate the features. It will be impor-

five northeastern States, i.e., that 5 percent of the tant to determine in future special care unit studies

nursing homes reported that although they did not whether cluster units are more like special care units

have a special care unit, they did place some than they are like nonspecialized nursing home units


Table 3-6-Conclusions From Descriptive Studies of Special Care Units-(Continued)

• Less than half of existing special care units provide a support group for unit staff members.

● The types of activity programs provided by special care units vary greatly, but existing special careunits are probably no more likely than nonspecialized units to provide activity programs for theirresidents.

• About half of existing special care units provide a support group for residents’ families.

● Special care unit residents are as likely or more likely than other nursing home residents with dementiato receive psychotropic medications.

• Special care unit residents are probably less likely than other nursing home residents with dementiain nonspecialized nursing home units to receive medications of all types.

* Special care unit residents are less likely than other nursing home residents with dementia to bephysically restrained.

● Special care units vary greatly in their admission and discharge policies and practices. About half ofall special care units admit residents with the intention that the residents will remain on the unit untilthey die.

* The cost of special care units varies depending on the cost of new construction or remodeling, if any,and ongoing operating costs. On average, existing special care units probably cost more to operate thanonnspecialized nursing home units, primarily because of the higher average staffing levels on specialcare units.

* Special care units generally have a higher proportion of private-pay residents than nonspecializednursing home units, and the private-pay residents are often charged more for their care in the specialcare unit than they would be in a nonspecialized unit.

Characteristics of Special Care Unit Residents

* Special care unit residents are younger than other nursing home residents, and they are more likelythan other nursing home residents to be male and white.

• Special care unit residents are more likely than other nursing home residents to have a specificdiagnosis for their dementing illness.

* Special care unit residents are probably somewhat more cognitively impaired and somewhat lessphysically and functionally impaired than other nursing home residents with dementia

• Special care unit residents are probably somewhat more likely than other nursing home residents withdementia to participate in activity programs.

• Special care unit residents are mom likely than other nursing home residents with dementia to fall.

SOURCE: (X&e of TkdInology Assessment, 1992.

and to compare the outcomes for residents with 2. special care units probably have more staff perdementia of the three types of units.

Four of the conclusions listed in table 3-6 wouldbe regarded by many people as indicators that ingeneral special care units are providing more appro-priate care than nonspecialized units for individualswith dementia. These conclusions are that onaverage:

1. special care units probably have fewer resi-dents than nonspecialized nursing home units;

resident than nonspecialized nursing homeunits;

3. special care unit residents are less likely thanindividuals with dementia in nonspecializednursing home units to be physically restrained;and

4. special care unit residents are probably morelikely than other nursing home residents withdementia to participate in activity programs.


In contrast, the finding that special care unitresidents are as likely or more likely than othernursing home residents with dementia to receivepsychotropic medications would be regarded bymany people as an indicator that special care unitsare not providing more appropriate care for individu-als with dementia. The issue of criteria for evaluat-ing the quality of special care units is discussed inchapter 1. One question with respect to that issue iswhether criteria such as number of residents, staff-to-resident ratios, and use of physical restraints andpsychotropic medications are valid criteria for eval-uating quality in themselves or whether their validityremains to be demonstrated in terms of theirrelationship to other resident outcomes.

Lastly, despite these tentative conclusions andobservations, the overriding conclusion to be drawnfrom this review of findings from the availabledescriptive studies is the need for more research thatbuilds on, clarifies, and expands upon currentfindings. As noted throughout the preceding discus-sion, many of the available studies have used verysmall samples and nonrandom samples. Moreover,since the studies did not use common definitions forthe unit and resident characteristics they observed,their findings are not necessarily comparable. Theseproblems are minimized in several sources offorthcoming descriptive information about specialcare units and special care unit residents which aredescribed in the next section.

FORTHCOMING DESCRIPTIVEINFORMATION ABOUT SPECIAL

CARE UNITS AND SPECIALCARE UNIT RESIDENTS

OTA is aware of several sources of descriptiveinformation about special care units and special careunit residents that will be available in the near future.As noted in the beginning of this chapter, researchersat George Washington University are currentlyanalyzing responses to a questionnaire and tele-phone interviews with more than 14,000 nursinghomes (247). The questionnaire asked for re-spondents’ opinions about the minimum characteris-tics a nursing home unit should have to be desig-nated as a special care unit. The questionnaire alsoasked about each of the topics discussed in thepreceding sections, including the size and ownershipof the nursing home, the size of the special care unit,its physical characteristics, philosophy of care,

admission and discharge criteria, staff selectioncriteria, staff training, staff-to-resident ratio, staffsupport groups, activity programs, programs forresidents’ families, use of physical and pharmacol-ogical restraints, and reimbursement. Once ana-lyzed, the results of this study will provide valuableinformation that is not currently available about allof these topics.

Another source of forthcoming information aboutspecial care units and special care unit residents isdata currently being collected by all nursing homesas a result of the implementation in 1990 ofmandatory assessment of nursing home residents inaccordance with the nursing home reform provisionsof the Omnibus Budget Reconciliation Act of 1987(OBRA-87). As discussed in chapter 1, all nursinghomes are now required to assess each of theirresidents at the time of the resident’s admission tothe nursing home and annually thereafter using theMinimum Data Set or a State-designated assessmentinstrument that includes the same core items. TheMinimum Data Set contains questions about each ofthe resident characteristics discussed in this chapter.Although there will undoubtedly be variation in theway these questions are answered by differentnursing home staff members, in different facilities,and in different States, use of the same or similarassessment instruments should increase the availa-bility of comparable information about all nursinghome residents, including residents of special careunits. Since all nursing home residents must bereassessed annually using the Minimum Data Set,longitudinal data on individual special care unitresidents will also become available. Variation inthe way the information is collected from one staffmember to another and one nursing home to anothermay, however, compromise its value for researchpurposes (437).

An early version of the Minimum Data Set hasalready been used to collect information on about300 residents of 20 special care units in six States aspart of the Multi-State Nursing Home Case Mix andQuality Demonstration-a 5-year study mandatedby Congress as part of OBRA-87. The special careunits included in the demonstration were designatedby the Health Care Financing Administration basedon recommendations from the Alzheimer’s Associa-tion and State officials in the four States in which thedemonstration is being conducted (Kansas, Maine,Mississippi, and South Dakota) and in two addi-tional States that are participating in some aspects of


the demonstration (Nebraska and Texas) (137).Information on residents of these special care unitswas collected in 1990. Data comparing 127 residentsof 10 of the special care units and 103 residents withdementia in nonspecialized units in the same nursinghomes were reported earlier in this chapter (382).Other findings from the demonstration have not yetbeen published. Individuals familiar with the dem-onstration’s findings say they show lower use ofphysical restraints, the same or higher use ofpsychotropic medications, and a higher incidence offalls in the special care units than in the nonspecial-ized nursing home units included in the demonstra-tion (15,521). As discussed in chapter 1, thedemonstration data also show greater resource usefor equally impaired residents with dementia in the

special care units than in the nonspecialized units(143).

Because of the current lack of agreed upon criteriafor evaluating special care units, there is no way todetermine the quality of the care provided by thespecial care units included in the Multi-State Nurs-ing Home Case Mix and Quality Demonstration.Nor is it possible to determine at this point whetherthese units are typical of special care units nationallyand whether the residents of the units are typical ofspecial care unit residents nationally. Nevertheless,the findings provide valuable information about arelatively large number of special care unit residentsand comparable information about residents withdementia in nonspecialized nursing home units.

Chapter 4

Special Care Units ForPeople With Dementia:

Findings From Evaluative Studies

ContentsPage

INTRODUCTION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 111TYPES OF EVALUATIVE STUDIES OF SPECIAL CARE UNITS . . . . . . . . . . . . . . . . 112EVALUATIVE STUDIES WITHOUT A CONTROL GROUP:

EFFECTS ON RESIDENTS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 112EVALUATIVE STUDIES WITH A CONTROL GROUP:

EFFECTS ON RESIDENTS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 117STUDIES OF PARTICULAR FEATURES AND INTERVENTIONS IN

SPECIAL CARE UNITS: EFFECTS ON RESIDENTS . . . . . . . . . . . . . . . . . . . . . . . . . . . 121STUDIES THAT EVALUATE THE EFFECTS OF SPECIAL CARE UNITS

ON UNIT STAFF MEMBERS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 123STUDIES THAT EVALUATE THE EFFECTS OF SPECIAL CARE UNITS

ON RESIDENTS’ FAMILIES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . . . 125CONCLUSION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 127

TablesTable Page4-1. Evaluative Studies Without a Control Group . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1134-2. Evaluative Studies With a Control Group . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1184-3. OTA’S Conclusions From the Evaluative Studies of Special Care Units . . . . . . . . . . 128

Chapter 4

Special Care Units For People With Dementia:Findings From Evaluative Studies

INTRODUCTIONAs noted in chapter 3, much of the literature on

special care units consists of descriptive reportsabout an individual unit. These descriptive reportsoften present anecdotal evidence of the unit’spositive outcomes. Frequently, the reports includecase examples that show how the unit benefited oneor more of its residents. Many of the reports alsodescribe positive outcomes of the unit for residents’families and unit staff members.

Anecdotal evidence of the positive outcomes ofindividual special care units is compelling. The caseexamples are particularly compelling: the individualresidents they describe seem typical of nursing homeresidents with dementia who do not do well innonspecialized units; these individuals often areadmitted to the special care unit in a very agitated orwithdrawn condition; they frequently have beenovermedicated and physically restrained; character-istics of the unit, including its physical designfeatures, patient care philosophy, and activity pro-grams, seem to match their needs exactly; and theyrespond positively and dramatically to the unitenvironment.

Case examples and other anecdotal evidence ofthe positive outcomes of individual units are notadequate, however, to evaluate the effectiveness ofspecial care units. In the past few years, a number ofevaluative studies of special care units have beenconducted. These studies attempt to measure objec-tively the effectiveness of one or more special careunits in terms of changes in aspects of theirresidents’ condition and functioning over time.Several of the evaluative studies also measure theeffects of special care units on residents’ familiesand unit staff members.

This chapter reviews what is known about specialcare units from the available evaluative studies. Itdoes not include information from descriptive re-ports on individual special care units. Findings of theavailable evaluative studies are discussed in somedetail because, like the descriptive studies discussedin chapter 3, they provide a basis for informed policydecisions about the development of special regula-

tions and reimbursement for special care units, aboutthe need for and content of consumer educationabout special care units, and about the futuredirection and level of government support forresearch on special care units.

OTA’s conclusions from the evaluative studiesdiscussed in this chapter are summarized in table 4-3at the end of the chapter. The findings differ,depending on whether the study used a controlgroup. The nine evaluative studies that did not use acontrol group found positive outcomes for specialcare unit residents in a variety of areas. If contradic-tory findings are excluded, the only positive out-comes found in more than one of the nine studies aredecreased nighttime wakefulness, improved hy-giene, and weight gain. A few of the studies foundimprovements over time in the important areas ofresidents’ ability to perform activities of daily livingand residents’ behavioral symptoms, but an equalnumber of studies did not find such improvements.

Only two of the six evaluative studies that used acontrol group found any positive outcomes forspecial care unit residents. One of these studiesfound that over a l-year period, 14 residents of onespecial care unit showed significantly less declinethan 14 residents with dementia in nonspecializedunits of the same nursing home in their ability toperform activities of daily living (392). The secondstudy found that 13 residents of one special care unitexhibited significantly fewer catastrophic reactionsthan 9 residents with dementia in nonspecializedunits of the same facility (265). The 13 special careunit residents also interacted significantly moreoften with staff members.

Only one of the four evaluative studies thatmeasured the impact of a special care unit on unitstaff members found any positive outcomes. Thefindings with respect to outcomes for residents’families are contradictory, as described later in thechapter.

The limited positive findings in many of theseevaluative studies and the complete lack of positivefindings in some of the studies are surprising andappear to contradict the conviction of special care

–111–


unit operators and others that the units benefitresidents, residents’ families, and unit staff mem-bers. Each of the available studies suffers from oneor more methodological problems that could invali-date its findings, e.g., small sample sizes and use ofnonrandom samples. Citing these problems, somespecial care unit advocates discount the lack ofpositive findings. In contrast, OTA concludes thatsome of the studies-particularly the six studies thatused a control group-constitute credible researchin an area in which good research is difficult todesign and conduct. Despite methodological prob-lems, the studies’ findings are meaningful anddeserve careful consideration by policymakers, spe-cial care unit advocates, and others.

TYPES OF EVALUATIVE STUDIESOF SPECIAL CARE UNITS

Three types of evaluative studies of special careunits have been conducted. In one type, selectedcharacteristics of individuals with dementia, theirfamilies, and/or unit staff members are measured atdesignated intervals before and after the individuals’admission to a special care unit. Changes or lack ofchanges in the measured characteristics over timeare then attributed to the impact of the special careunit. This type of study does not use a separatecontrol group.

The second type of evaluative study does use aseparate control group. In this type of study, selectedcharacteristics of the special care unit residents, theirfamilies, and/or unit staff members and selectedcharacteristics of other individuals with dementia,their families, and/or staff members in nonspecial-ized nursing home units or other settings aremeasured at designated intervals. Changes or lack ofchanges in the measured characteristics of the twogroups of subjects are compared, and any differencesbetween the two groups are attributed to the impactof the special care unit.

A third type of evaluative study measures theeffectiveness of particular features and interventionsin special care units. One example is research on theeffectiveness of various types of devices to deterresidents who wander from leaving the unit.

The findings of these three types of evaluativestudies are discussed in the following sections.Findings with respect to the effects of special care

units on residents, residents’ families, and unit staffmembers are discussed separately.

EVALUATIVE STUDIESWITHOUT A CONTROL GROUP:

EFFECTS ON RESIDENTSOTA is aware of nine evaluative studies of special

care units in which a control group was not used (seetable 4-l). Seven of the nine studies were conductedin a single special care unit. The other two studieswere conducted in two and three special care units,respectively. The samples for 6 of the 9 studies werevery small (under 12 individuals each). One of the 3remaining studies had a sample of 32 subjects, andone had a sample of 53 subjects (24,245). Thesample size for the ninth study is not specified in thestudy report (22).

Table 4-1 lists the physical design and otherchanges made to create the special care units, asdescribed in the study reports. These changesdiffered from one special care unit to another. Somechanges that were made to create one or more of theunits may not have been mentioned in the studyreports.

Each of the nine studies found some positiveoutcomes of the special care units, as summarizedbelow. The study reports emphasize these positiveoutcomes. Negative outcomes are also reported, butthey receive less emphasis in the study reports. Thestatistical significance of the studies’ findings wascomputed in only four of the nine studies. In thefollowing discussion, OTA uses the terms statisti-cally significant and significant for research findingswith a P value of 0.05 or less.

Bell and Smith found statistically significantimprovements in behavior among residents of anewly created 24-bed special care unit (22). Over a3-month period, the residents became significantlymore likely to exhibit three behaviors defined as“positive’ by the researchers-having a clean face,having clean clothes, and walking alone. At the endof the 3-month period, the frequency of thesebehaviors among residents of the newly created unitwas similar to their frequency among residents of a26-bed special care unit that had been operating forover a year. This outcome fit the researchers’hypothesis that behaviors they defined as positivewould increase over time in the new unit andbehaviors they defined as negative would decrease

Table 4-l—Evaluative Studies Without a Control Group

Year of Funding Duration ofCitation the Study Source Subjects study Changes Made to Create the Special Care Unit

Bell and Smith,unpublishedmanuscript

1986 no funding sourcereported

residents of one 24-bedspecial care unit andone 28-bed special careunit

32 residents of a 46-bed special care unit

6 months, from 3months before to 3months after the 24-bed unit opened

locked access doors; secure outdoor area; separate lounge, dining area andnurses’ station; increased staff-to-resident ratio compared to nonspecializedunits in the same two facilities; staff training by the Denver Alzheimer’sAssociation Chapter; efforts to involve families.

unlocked access doors with alarms and double doorknobs; special activityprograms; sensory stimulation; reality orientation; personal markers on resi-dents’ doors; orientation boards; ongoing staff training; family support groups.

Benson et al.,1987 andCameron et al.,1987

1984-1985 no funding sourcereported

one year, from just be-fore to one year afterthe unit opened

11 residents of a 20bed special care unit

8 months, from 4months before to 4months after the unitopened

6 months, from 3months before to 3months after the unitopened

“quiet, predictable environment;” increased staff-to-resident ratio compared tothe rest of the facility.

Bullock et al.,unpublishedmanuscript,1988

1987 no funding sourcereported

no funding sourcereported


closed access doors; separate dining and activity areas; efforts to reducestimulation; consistent dally routine; neutral colors and design; no TV or radio;only one phone; visitor and staff traffic through the unit limited to reducestimulation; training programs for staff and families.

Cleary et al.,1988

notreported


6 residents of a 26-bedspecial care unit

4 months, from beforeadmission to 4 monthsafter admission for 5subjects, and one month,from before admissionto one month after ad-mission for one subject

3 months, from the timethe unit opened to 3months after it opened

locked access doors; separate dining room and day room; calm, reassuringapproach; flexible daily routine; familiar background music; residents encour-aged to bring in personal Items; 40 hours of staff training; efforts to Involvefamilies.

Greene et al.,1985

notreported

Hall et al.,1966


12 residents of a 24-bed unit that alsohoused nondementedchairfast residents

unlocked access door; minimal remodeling; efforts to reduce stimulation; nomirrors; no TV; no public address system; home-like atmosphere; textured wallhangings; chairs placed in the corridor to encourage resting; flexible dallyroutine; residents fed In small groups; visitor and staff traffic through the unitlimited to reduce stimulation; no Increase in staff; ongoing staff training; effortsto involve families; family support groups.

notreported

locked access doors; resident bedrooms situated on three skies of a largecentral space; designated dining and activity areas; open, centrally locatednurses’ station; therapeutic kitchen for residents; lounge for residents and theirfamilies; staff offices located just outside the unit; movable furniture in centralarea; washable, vinyl wall coverings in neutral colors; fabric wall hangings;mirrors in residents’ rooms; large dock; orientation board; color-coded doorjams and bedrooms; residents’ name on bedroom door; toilet In each bedroom.


53 residents of 3 iden-tical 40-bed special careunits in a 120-bed nurs-ing home designed forpersons with dementia

19 months, from oneyear before to 7 monthsafter the units opened

Lawton et al.,1984 andLiebowitz et al.,1979

one year, from before toone year after the unitopened

closed unit; no other features of the unit are described in the study report.McCracken andFitzwater, 1988

notreported


11 residents of a spe-cial care unit; unit sizenot reported

doorways painted in contrasting colors; enclosed outdoor area with nonpoison-ous plants; furniture with rounded edges; medication carts and housekeeping

Mummah-Castillo,1987



one year, from 6months before to 6

carts locked; residents encouraged to bring in personal items; home-likeatmosphere; visual cues; clocks, calendars, and orientation boards; remi-niscence therapy; pet therapy; cooking; encourage resident participation Inactivities; staff training; staff selected specifically for the unit; efforts to involvefamilies.

months after admission



and eventually reach the same frequency as in the oldunit.

Other findings of Bell and Smith’s study did notfit their hypothesis. Use of physical restraints, whichwas significantly higher in the new unit than the oldunit at the beginning of the study, increased in bothunits over the course of the study (22). In addition,at all times during the study, residents of the old unitwere significantly more likely than residents of thenew unit to exhibit two behaviors defined asnegative by the researchers-being incompletelydressed and talking to oneself. One “positive”behavior—talking with others-was significantlymore common in the new unit than the old unit, butincreased over time in the old unit. Thus somenegative behaviors were more common in the oldthan the new unit, and one positive behaviorincreased in the old unit over time. ‘‘Negative’behaviors, such as shouting, swearing, and hitting,were rare on both units, and their frequency did notchange over time.

Benson et al. found statistically significant im-provements in mental and emotional status, hygiene,and other physical functions among 32 residents ofone 46-bed special care unit (24). Compared withbaseline values at the time of the residents’ admis-sion to the unit, significant improvements werefound at both 4 months and 1 year in the followingaspects of the residents’ mental and emotionalstatus: the residents made more decisions, compre-hended more, were more responsive, exhibitedgreater interest in themselves and others, and werejudged by the researchers to be less lonely, anxious,apathetic, depressed, and self-centered. Improve-ments in hygiene and other physical functionsincluded increased cleanliness and neatness, bettereating habits, normal bowel habits, and normalurinary function. Residents also had less difficultysleeping, took fewer sedatives, had less diarrhea, andwere less malodorous. No statistically significantchanges were noted over the l-year course of thestudy in the proportion of residents who weredependent in activities of daily living (i.e., bathing,dressing, eating, transferring, or walking) or in theproportion of residents who exhibited five behav-ioral symptoms (i.e., regressive behavior, wander-

ing, nighttime agitation, assaultiveness, and abusive-ness) (70).

Bullock et al. found improvements in behavioramong 13 female residents of a 20-bed special careunit (56).1 The researchers compared the frequencyof 11 behavioral symptoms over an 8-month periodfrom 4 months before until 4 months after the unitopened. The 11 behavioral symptoms were agita-tion, anxiety, combativeness, insomnia, resistive-ness, uncooperativeness, restlessness, withdrawal,verbal abusiveness, yelling, and taking off one’sclothes. In the 4 months after the special care unitopened, the frequency of 9 of the 11 behavioralsymptoms was greatly reduced (from 12 to 84percent, depending on the behavior). The frequencyof the other 2 behavioral symptoms—resistivenessand verbal abuse-increased 5 percent and 20percent, respectively. No other negative outcomesare noted in the study report. On the positive side, thereport notes slight reductions in the dosages ofpsychotropic medications received by some of theresidents. The statistical significance of the study’sfindings was not computed.

As part of the study by Bullock et al., briefinterviews were conducted with the unit residents(56). The residents were asked whether they likedthe unit; whether they were “very happy,” “prettyhappy,” or ‘‘not so happy;’ whether they weretreated well; and whether they were worried orrelaxed. In general, the residents expressed positiveattitudes toward the unit. No attempt was made toevaluate the reliability or validity of their responses.Moreover, since the interviews were conducted onlyonce, after the unit opened, it is not clear whetherthere were changes in the residents’ attitudes thatcould be attributed to the impact of the special careunit.

Cleary et al. found statistically significant im-provements in several aspects of the functioning andphysical condition of 9 residents of a 16-bed specialcare unit which is described in the study report as a“reduced stimulation unit” (88). Over a 6-monthperiod from 3 months before to 3 months after theiradmission to the unit, the residents’ average scoresimproved significantly on the Haycox DementiaBehavior Scale (176), an assessment instrument that

1 This study diilers from the other studies discussed in this section because the special care unit was in a mental hospital rather than a nursing home.OTA has included the study in this analysis of evaluative research on special care units because, like the other special care units included in the analysis,this special care unit is intended to serve only individuals with Alzheimer’s disease and related dementias. Other studies that have evaluated specializedunits in mental hospitals have focused on units that serve elderly persons with a variety of psychiatric conditions as well as dementia.

Chapter 4--Findings From Evaluative Studies ● 115

includes measurements in 8 areas (language/conver-sation, social interaction, attention/awareness, spa-tial orientation, motor coordination, bowel andbladder control, eating and nutrition, and dressingand grooming). The special care unit residents alsobecame significantly less agitated; use of physicalrestraints was significantly reduced; and the resi-dents’ weight increased. No changes were noted inresidents’ sleep patterns or use of psychotropicmedications. The researchers observed more interac-tions among residents and between residents andstaff members, but the study design did not includea measure of these interactions.

As part of the study by Cleary et al. interviewswere conducted with the unit residents to assess theirfeelings of security and well-being (88). The resi-dents were asked the same six questions at four timesbefore and four times after the unit opened. Theywere asked whether they felt safe; whether they gotthe help they needed; whether they got enough toeat; whether the unit was “a good place;’ whetherthey had a place to sleep; and whether they wereafraid. Nine of the 11 residents in the study samplecompleted all the interviews. In general, the resi-dents expressed a high level of security. Theirresponses were also highly consistent, suggesting itis possible to obtain consistent responses from somenursing home residents with dementia. Whether theresidents’ responses reflect their true feelings is notknown.

Greene et al. found improvements in behavior andother aspects of functioning among 6 residents of a26-bed special care unit (160). The researcherscompared the frequency of 10 negative indicatorsover a 4-month period for 5 of the residents and overa l-month period for one resident. The 10 negativeindicators were hostility, agitation, decreased appe-tite, failure to feed oneself, combativeness, failure toambulate, incontinence, inability to dress oneself,withdrawal, and hallucinations. The frequency ofeight of these indicators decreased to zero over thecourse of the study, and the frequency of the othertwo indicators-hostility and failure to ambulate—was greatly reduced. An improvement in cognitiveskills was found in two of the three residents inwhom cognitive skills were measured. An improve-ment in mood was found in the three residents inwhom mood was measured. The statistical signifi-cance of the study’s findings was not computed.

Hall et al. found reduced use of psychotropicmedications and desirable weight gain in residentsof a 24-bed special care unit described in the studyreport as a “low stimulus unit” (171). In the3-month period after their admission to the unit,psychotropic medication use was reduced or elimi-nated in 5 of the 12 individuals in the study sample.Prior to their admission to the special care unit, all12 individuals had been losing weight. In the 3months after their admission to the unit, 6 of theresidents gained weight; 5 stopped losing weight,and one continued to lose. The statistical signifi-cance of the study’s findings was not computed.

The study by Hall et al. was intended to evaluatethe effectiveness of the special care unit in reducingcatastrophic reactions, defined by the researchers toinclude outbursts of noisiness, agitation, combative-ness, sudden withdrawal, increased confusion andfear, intensified pacing, and nighttime wakefulness(171). The study did not include quantitative meas-urements of these indicators, however. The research-ers observed a decreased incidence of two of theindicators-agitation and nighttime wakefulness.Other positive outcomes were also observed, includ-ing increased social interaction among the residents,decreased wandering, and reduced incidence ofdelusions. The researchers point out, however, thatthese positive findings are based on subjectiveevaluations and that objective measurements ofvarious outcome indicators are needed.

Lawton et al. found statistically significant in-creases in friendliness and interest among 53 resi-dents who were moved from a 350-bed nursinghome to three 40-bed special care units in a new120-bed nursing home (245). The researchers com-pared the residents’ cognitive and self-care abilities,behavior, and mood at 4 times in the l-year periodbefore the move and 2 times, one month and 7months, after the move. Over the 19-month period ofthe study, the subjects showed a significant decreasein cognitive and self-care abilities. Following themove, the subjects spent less time in their bedroomsand more time in the social spaces, but there were nosignificant changes in social behavior, involvementin planned or staff-supervised activities, ambulation,behavioral symptoms, use of restraints, or time spentsleeping or doing nothing. There was an increase insolitary activities and a decrease in self-maintenanceactivities. Although the residents were judged by thestaff to be significantly more friendly and interestedafter the move, they were also judged to be


significantly more depressed. There were no statisti-cally significant changes in any of the other moodstates studied (i.e., anxiety, anger, happiness, amuse-ment, agitation, and tranquility).

Lawton et al. also compared the behavior of 80residents of the 3 special care units and 40 residentsof the old 350-bed nursing home (245).2 Thecomparison showed the special care unit residentswere significantly more likely than the residents ofthe old nursing home to be involved in planned andstaff-supervised activities and significantly lesslikely to exhibit behavioral symptoms. On thenegative side, the special care unit residents weresignificantly less likely to be involved in self-maintenance activities. There were no significantdifferences between the special care units residentsand the residents of the old nursing home in socialbehavior, ambulation, involvement in solitary activ-ities, or time spent sleeping or doing nothing.

McCracken and Fitzwater found improvements inspecial care unit residents’ scores on the HaycoxDementia Behavior Scale (297), (as did Cleary et al.,discussed earlier). Over the l-year period of theMcCracken and Fitzwater study, 8 of the 11individuals in the study sample showed improve-ments in their overall scores on the scale. Improve-ments were noted in all but two of the measuredcharacteristics-motor coordination and dressingand grooming. The three subjects whose overallscores on the scale did not improve showed thegreatest decline in these two areas, as well as boweland bladder control, eating and nutrition, and spatialorientation. The statistical significance of thesefindings was not computed.

Mummah-Castillo found reductions in the dos-ages of psychotropic medications and desirableweight changes in residents of a 22-bed special careunit (312). Over a l-year period from 6 monthsbefore to 6 months after their admission to the unit,9 of the 10 individuals in the study sample showeda weight gain, and the dosages of psychotropicmedications were decreased for 7 of the 10 subjects.The statistical significance of these findings was not

computed. The researchers observed that aggressivebehaviors and catastrophic reactions were rare on theunit, but the incidence of these behaviors was notmeasured.

In Summary, all nine studies found some positiveoutcomes of the special care units they evaluated.The positive outcomes vary from one study toanother, and some of the findings are contradictory.As noted earlier, if the contradictory findings areexcluded, the only positive outcomes found in morethan one of the nine studies are decreased nighttimewakefulness, improved hygiene, and weight gain.

These studies are frequently cited as evidence thatspecial care units are effective. Often the research-ers’ general observations, rather than a study’sspecific findings, are cited. In many instances,findings that are cited from one study are contra-dicted by findings of another study.

All the studies suffer from one or more problemsthat raise questions about the validity of theirfindings-both positive and negative. One of theseproblems is small sample sizes. The second problemis the lack of rigorous research design and imple-mentation. In many of the studies, the outcomes tobe measured are not clearly defined, and themeasurement process is more impressionistic thanobjective or standardized. As noted earlier, thestatistical significance of the findings was computedin only four of the nine studies. Failure of the studiesto include a control group is another problem sincewithout a control group, the impact of the specialcare unit cannot be separated from the impact ofother factors that may affect resident outcomes.Finally, many of the studies were conducted by unitstaff members or other individuals who were in-volved in planning or operating the unit. Theseindividuals have an obvious interest in findingpositive outcomes. The potentially powerful effectof their expectations coupled with small samplesizes, lack of a rigorous research design, and lack ofcontrol groups means the results of the studies mustbe suspect.

Z ‘rh.is component of the study had a pre-post design like the other studies discussed in this SWiOn and an apptUent control group me the studiesin the following section of the chapter. The study is included in this section because the status of the control group is unclear. Some, but not all, of the80 special care unit residents were among the 40 residents of the old nursing home who constituted the control group (245). The study report providesno information about the special care unit residents who were not among the 40 residents of the old nursing home that constituted the control group,


EVALUATIVE STUDIES WITH ACONTROL GROUP: EFFECTS

ON RESIDENTSOTA is aware of six evaluative studies of special

care units in which a control group was used (seetable 4-2). The samples for these six studies are, onaverage, larger than the samples for the studiesdiscussed in the previous section. The six studiesvary in the outcomes they studied and their duration.The control groups they used also vary: four of thestudies used a control group consisting of individu-als with dementia in nonspecialized nursing homeunits that also serve nondemented residents; onestudy used a control group consisting of individualswith dementia in a segregated but nonspecializedunit; and one study used a control group consistingof individuals on the waiting list for admission to aspecial care unit. As described below, only two ofthe six studies found any statistically significantpositive outcomes for the special care unit residents.

Chafetz compared changes in cognitive and be-havioral characteristics over a 15-month period in 12residents of a 30-bed special care unit and 18residents of a 60-bed nursing home unit that servedonly individuals with dementia but provided nospecialized services (80). The study was designed totest the hypothesis that cognitive abilities woulddecline equally over time in residents of the twounits, whereas behavior would decline less inresidents of the special care unit. As shown in table4-2, the staff-to-resident ratios were similar in thetwo units, but the special care unit staff memberswere specifically selected and trained to work on theunit. The special care unit provided family meetingsand a more extensive activity program than thenonspecialized unit, and a few physical designfeatures distinguished the special care unit from thenonspecialized unit. The study found that bothcognitive abilities and behavior worsened over timein residents of the two units. The special care unithad no statistically significant effect on residents’cognitive abilities or their behavior, and there wereno positive outcomes that could be attributed to thespecial care unit.

Coleman et al. compared the rate of hospitaliza-tion over a l-year period for 47 residents of 2 specialcare units and 58 residents of 2 nonspecialized unitsin the same nursing home (99). The 58 residents ofthe nonspecialized units included 36 individuals

who had a diagnosis of dementia and 22 individualswho did not have a diagnosis of dementia. The studywas designed to determine whether special care unitresidents are less likely than residents of nonspecial-ized units to be hospitalized. The staff-to-residentratios were the same for the special care units and thenonspecialized units. The study report does notdescribe the differences in physical design or otherfeatures of the units. The study found no statisticallysignificant difference in the rate of hospitalizationfor the special care unit residents and the residents ofthe nonspecialized units. There was, however, anonsignificant trend for a larger proportion of thespecial care unit residents to be hospitalized over thecourse of the study (21 percent vs. 14 percent,respectively). The higher rate of hospitalization forthe special care unit residents was due primarily toa higher incidence of hip fractures: 9 percent of thespecial care unit residents, compared with only 3percent of the residents of the nonspecialized units,were hospitalized for hip fractures.

Holmes et al. compared changes in cognitive,functional, and behavioral characteristics over a6-month period in 49 residents of 4 special care unitsand 44 individuals with dementia in nonspecializedunits in the same 4 nursing homes (195). The studywas designed to measure the impact of a special careunit vs. a nonspecialized nursing home unit onindividuals with dementia. Table 4-2 lists the manydifferences between the special care units and thenonspecialized nursing homes in terms of staff,activity programs, and physical design features.Baseline measurements indicated there were statisti-cally significant differences between the special careunit residents and the residents of the nonspecializedunits at the start of the study. The special care unitresidents were, for example, more likely thanresidents of the nonspecialized units to be disori-ented and to exhibit behavioral symptoms. Thespecial care unit residents were also more likely tobe able to ambulate independently. After 6 months,the study found little change in any of the measuredresident characteristics, including cognitive abili-ties, mood, ability to perform activities of dailyliving, frequency of behavioral symptoms, sleepproblems, and ability to ambulate independently.Taking into account differences between the specialcare unit residents and residents of the nonspecial-ized units at the beginning of the study, theresearchers found no statistically significant positive

Table 4-2—Evaluative Studies With a Control Group

Year of Funding Duration ofCitation the Study Source subjects study Changes Made to Create the Special Care Unit

_- - -- ----Chafetz, 1981

Coleman et al.,1990

Holmes et al.,1990

Maas andBuckwalter,1990

Rovner et al.,1990

Wells and Jorm,1987

1988-1987

1987-1988

not reported

1986-1988

1885-1886

1986

University of Texassouthwestern Med-ical Center and Itsaffiliated Alzheimer’sDisease ResearchCenter

University of Cal-ifornia, San Fran-cisco, School of Meal-icine, and U.S.Health Resourcesand Services Admin-istration


National Center forNursing Research

Johns Hopkins Uni-versity’s affiliatedAlzheimer'sDiseaseResearch Center


12 residents of a 30-bedspecial care unit and 8 resi-dents of a 60-bed unit Inwhich individuals with de-mentia were segregated butno special services wereprovided

46 residents of two 28-bedspecial care units and 58residents of two 28-bed non-specialized units in the samefacility (of the 58 residentsof the nonspecialized units,36 had dementia, and 22did not)

49 residents of special careunits in 4 nursing homesand 44 residents with de-

13 residents of a 20-bedspecial care unit in a State-owned veterans home and9 residents with dementia innonspecialized units of thesame facility

14 residents of a 22-bedspecial care unit which iSpart of a 31-bed unit and 14residents with dementia innonspecialized units of thesame facility

12 residents of a specialcare unit in Australia and 10individuals with dementiawho were on the waiting listfor the unit and living athome

13 to 15 months

one year

6 months

2 years

one year

3 months, from justbefore admission tothe unit to 3 monthsafter admission

in the special care unit: access door secured with special locks; secure outdoorarea; 34 hours per week of specialized activities; staff selected specifically for theunit; staff training over a 10-week period and ongoing training; efforts to involvefamilies; family meetings every 6 to 8 weeks.

in the comparison unit: no special physical design features; 5 hours per week ofnonspecialized activities; no special staff training or special efforts to involvefamilies.

no physical design or other special features of the special care units are describedin the study report; the report says that the distinguishing features of the specialcare units “are similar to those found in the literature;” the staff-t-resident ratioswere the same on the special care units and the nonspecialized units.

in the special care units: dosed access doors with alarms; furniture with roundededges; special activity rooms; nurses’ station located near the exits to facilitatemonitoring residents; special activity programs; reality orientation; music programs;Increased staff-to-resident ratios; staff training; multidisciplinary team care.

in the comparison units: no special physical design features, activity programs, orstaff training.

in the special care unit: locked access doors; access doors camouflaged withmurals; secure outdoor area; separate day room/dining room; dividers in residentrooms to provide privacy; residents’ beds dose to the floor; curtains and wallhangings with velcro fasteners to prevent damage if residents pull on them; safetymirrors; safety glass; supplies stored out of view; no highly waxed floors; no stairsIn the unit; residents’ lockers and all but one drawer are locked to preventrummaging; flexible daily routine; efforts to reduce stimulation; subdivided diningroom to allow residents to eat In small groups; fabric wall decorations; colors thatare “functionally stimulating and reassuring;” orientation signs; piped-in music; pettherapy; specialized activity programs; activity barrel filled with pliable plastic itemsfor residents; multidisciplinary team; consistent staff; efforts to involve families.

in the comparison units: no special physical design features, activity programs, orstaff training.

in the special care unit: an activity room; staff training; weekly rounds with apsychiatrist and internist; staff efforts to identify residents’ specific cognitiveImpairments, to treat depression, delusions, and hallucinations, to recognizemedication side effects, to maintain residents’ physical health, to reduce use ofphysical restraints, and to increase participation in activities; 40 hours a week ofspecialized activities.

in the comparison units: no special physical design features, activities, or stafftraining; less hours of nursing care per resident (2.1 hours/day in the nonspecializedunits vs. 2.9 hours/day In the special care unit).

In the special care unit: corridors designed for wandering; secure outdoor area;private rooms; several activity rooms; home-like atmosphere; residents encouragedto bring their own furniture; unit philosophy of “normalization.”

for the comparison group: respite care, adult day care, and in-home services asneeded.



outcomes that could be attributed to the special careunit.

Maas and Buckwalter compared changes in cog-nitive, fictional, behavioral, and other characteris-tics in 13 residents of a 20-bed special care unit and9 individuals with dementia in nonspecialized unitsin the same facility (265). The study was designed tomeasure the effect of a ‘‘low stimulus’ special careunit vs. nonspecialized nursing home units onresidents with dementia, their families, and the unitstaff members. As noted in table 4-2, many physicaldesign and other changes were made to create thespecial care unit. Extensive baseline data werecollected in the year before the unit opened (264).After the unit opened, data were collected for oneyear at 2-month intervals. Due to subject attrition,complete data for the 22 subjects are available foronly a 10-month period, from 4 months before to 6months after the unit opened (265). These data showno statistically significant differences over time inthe cognitive or functional abilities of the specialcare unit residents and the individuals with dementiain the nonspecialized units. The most frequentlyreported behaviors for both groups of residents were‘‘sleeping/resting, ’ ‘ ‘quiet, ’ and ‘‘pleasant/happy.” Catastrophic reactions occurred, but theirfrequency decreased significantly from baselinelevels for both groups of residents.3 Nevertheless,catastrophic reactions were significantly less fre-quent in the special care unit residents than in theindividuals with dementia in the nonspecializedunits. The special care unit residents were alsosignificantly more likely than the individuals withdementia in the nonspecialized units to interact withstaff. There were no significant differences betweenthe two groups in the frequency of their interactionswith other residents or family members. The re-searchers noted a general trend for the subjects tobecome more active after being admitted to thespecial care unit. This increased activity includedboth positive and negative behaviors. The research-ers point out that:

Behaviors such as “screaming/yelling,” “pacing,”‘‘noisy,’ and “restless,” as well as a decrease in‘‘cooperative’ behavior may be seen as non-constructive. Positive behaviors such as “pleasant/happy, “ “talking/visiting,” “a wake,” and “up and

about,’ were all reported more frequently among theexperimental group. . . Viewed singly, no one be-havior (changed) significantly. However, whenviewed (together), it seems that important changes inoverall level of activity were occurring after intro-duction of the special care unit (265).

Other results of the study show that for their first fourmonths in the unit, the special care unit residentswere significantly less likely to be physicallyrestrained than the individuals with dementia on thenonspecialized units, but for the next 2 months, thespecial care unit residents were significantly morelikely to be physically restrained. Use of antipsy-chotic medications was significantly higher for thespecial care unit residents both at baseline andfollowing their admission to the special care unit.There was no significant difference between the twogroups in the total number of medications of allkinds that they were taking. Lastly, the special careunit residents were significantly more likely to fallthan the individuals with dementia on the nonspe-cialized units, but the increased incidence of fallswas not accompanied by an increase in injuries dueto falls.

Rovner et al. compared changes in fictionalability over a l-year period in 14 residents of a22-bed special care unit and 14 individuals withdementia in nonspecialized units in the same nursinghome (392). As shown in table 4-2, the special careunit provided more hours of nursing care and moreactivity programs than the nonspecialized units.Only one physical design change was made to createthe unit. In the view of the researchers, the distin-guishing features of the special care unit were theefforts of its multidisciplinary staff to accomplishsix objectives: 1) to identify residents’ specificcognitive impairments and associated disabilities,2) to treat depression, delusions, and hallucinations,3) to identify medication side effects; 4) to maintainresidents’ physical health; 5) to reduce use ofphysical restraints, and 6) to increase residents’participation in activities. Baseline measurementsindicated that the special care unit residents weresignificantly younger, on average, than the residentsof the nonspecialized units and that the special careunit residents were less likely to be taking medica-tions of all types. The study found that over a l-year

3 c~taS&ophic ~eaction was def~~ in tis study as ‘ ‘a reaction (mood change) of the resident in response to Wtit WY aPPe~ to s~to ~ ~stimuli (bathing, dressing, having to go to the bathmo~ a question asked of the person) which can be characterized by weeping, blushing, anger,agitatio~ or stubbornness. The reaction is not necessarily very dramatic or violen~ but may appear over-emotional or not appropriate for the stimulus’(265).


period, there was much less decline in the fictionalabilities of the special care unit residents than theresidents of the nonspecialized units: 14 percent ofthe special care unit residents and 64 percent of theresidents of the nonspecialized units declined intheir “level of care” as determinedly the number ofactivities of daily living with which they neededassistance. This statistically significant positiveoutcome is attributed by the researchers to theimpact of the special care unit.

Wells and Jorm compared changes in cognitive,functional, and behavioral characteristics over a3-month period in 12 residents of an Australianspecial care unit and 10 individuals who were on thewaiting list for the unit and living in the community(489). The study was designed to compare the effecton individuals with dementia and their families ofbeing in a special care unit vs. being deferred fromadmission. The study findings with respect to theimpact on the subjects’ families are discussed laterin this chapter. The physical changes made to createthe special care unit included an environmentaldesign to allow wandering, a secure outdoor area,and efforts to create a home-like atmosphere. Mostof the individuals on the waiting list received respitecare, and some received adult day care or in-homeservices. The study found that over a 3-monthperiod, the cognitive and functional abilities andbehavior of all the subjects declined. Except for atemporary worsening of behavioral symptoms amongthe special care unit residents in the first month ofthe study, there was little difference in the rate ofdecline in these characteristics between the specialcare unit residents and the individuals on the waitinglist.

In summary, four of the six evaluative studies thatused a control group found no statistically signifi-cant positive resident outcomes that could beattributed to the special care unit. One of the studieswith a positive resident outcome found that over al-year period the special care unit residents showedsignificantly less decline than individuals withdementia in the nonspecialized units in their abilityto perform activities of daily living (392). The threeother studies that used a control group and measuredresidents’ ability to perform activities of daily livingfound no significant effect of the special care units

in this area. The second study with positive residentoutcomes found that special care unit residentsexhibited significantly fewer catastrophic reactionsthan residents with dementia in the nonspecializedunits (265). The special care unit residents alsointeracted significantly more with staff members.

The research design and implementation of thesesix studies are far more rigorous than the design andimplementation of the nine studies discussed earlierthat did not use a control group. The outcomes aremore precisely defined and measured in these sixstudies, and their use of a control group increases thepresumed validity of their findings.

On the other hand, there are one or more problemswith each of the studies that could affect the validityof their findings-both positive and negative. Oneproblem is that several of the studies were conductedby individuals who were involved in planning orworking on the special care unit that was the focusof the study. In one of the two studies that found apositive resident outcome (392), the nurses whoevaluated the residents’ ability to perform activitiesof daily living were unit staff members whosejudgments about the residents could have beenbiased by their expectations about the effectivenessof the special care unit.4

A second problem that could affect the validity ofthe findings of some of the studies discussed in thissection is selection bias. If the special care unitresidents and the control group subjects differed insignificant ways at the start of the studies, thesedifferences, rather than the impact of the special careunit, could account for any observed differences inoutcomes. To address this problem, all six studiesdiscussed in this section compared the characteris-tics of the special care unit residents and controlgroup subjects at the beginning of the study, andseveral of the studies used statistical methods tocorrect for any observed differences in the twogroups.

As discussed in chapter 1, randomization ofsubjects to the special care unit or the control groupwould be the ideal way to address the problem ofentry point differences among subjects. Two of thestudies discussed in this section (265,489) randomlyassigned subjects to the special care unit or the

4111 addition to bias iIIrm&KXXI by StimemberS’ expectations, a more subtle form of bias could arise in this and other St’UdieS thttt rely On stimembers’ evaluations of residents’ ability to perform activities of daily living as a result of differences in the way impairments in activities of daily livingare pereeived on a special care unit vs. a nonspecialized nursing home unit.


control group. Randomization of subjects apparentlyworked well in the 3-month study by Wells and Jorm(489). Randomization also worked well initially inthe longer study by Maas and Buckwalter buteventually broke down, in part because some fami-lies were reluctant to move their relative who wasdoing well in a nonspecialized unit to the specialcare unit to meet the requirements of the studydesign (265).

A third methodological problem—and one thatcould affect the validity of the findings of Rovner etal. (392)—is failure to measure differences in thecognitive abilities of the special care unit residentsand control group subjects at the end of a study. Asnoted earlier, the outcomes measured in the study byRovner et al. were changes in the subjects’ ability toperform activities of daily living (392). In individu-als with dementia, ability to perform activities ofdaily living is related to some degree to cognitiveability (369,508). The special care unit residents andcontrol group subjects in this study did not differsignificantly in their cognitive abilities at the begin-ning of the study, but their cognitive abilities werenot measured at the end of the study, and significantdifferences could have developed. If such differ-ences did develop, they, rather than the impact of thespecial care unit, could account for the observeddifferences in the proportion of special care unitresidents vs. control group subjects that declined intheir ability to perform activities of daily living.

In addition to these methodological problems,there are difficulties in interpreting the findings ofthe six evaluative studies. In all six studies, thespecial care units differ in many ways from thecontrol group settings. It is unclear whether particu-lar features of the special care units or their overallmilieu account for the studies’ findings. A thirdpossibility proposed by Rovner et al. as an explana-tion for the findings of their study is that increasedstaff attention to the unit residents could account forthe positive outcome, irrespective of any specialfeatures of the unit (392). In all these studies, it isalso possible that certain aspects of the special careunits (i.e., particular features, milieu, or staff atten-tion) have a positive impact and other aspects havea negative impact, and that the two types of impactscancel each other out. Still another possibility is thatcertain aspects of the special care units have apositive impact on some residents and a neutral ornegative impact on other residents, and that theseimpacts cancel each other out. Small sample sizes,

lack of a common taxonomy for classifying individ-uals with dementia across studies, and lack of aprecise description of the features of each of thespecial care units make it impossible at present todifferentiate among these various explanations.

The one study that found a significant positiveeffect of a special care unit on the residents’ abilityto perform activities of daily living focused on a unitthat was created with the addition of an activity roombut no other physical design changes (392). Instead,the “special” features of the unit, in the view of theresearchers, were staff efforts to identify residents’specific cognitive impairments, to treat depression,delusions, hallucinations, and medication side ef-fects, to maintain residents’ physical health, and toincrease their involvement in activities. Ongoinginvolvement of a psychiatrist on the staff seems to beunique to this study. Whether any of these featuresare different enough from the features of the specialcare units in the other studies to explain theircontradictory findings cannot be determined fromthe available data.

STUDIES OF PARTICULARFEATURES AND INTERVENTIONS

IN SPECIAL CARE UNITS:EFFECTS ON RESIDENTS

Unlike studies that evaluate the overall impact ofa special care unit, some studies evaluate the effectof particular features and interventions in a specialcare unit. Such studies do not constitute special careunit research in the same sense as the studiesdiscussed earlier in this chapter because the featuresand interventions generally can be used in nonspe-cialized nursing home units and other residential andnonresidential care settings as well as in special careunits. The research to evaluate these features andinterventions can also be conducted in other settings.For these reasons, studies of particular features andinterventions in special care units are not discussedin the same detail in this report as studies thatevaluate the overall impact of the units.

The particular features and interventions that havebeen studied most in special care units are variousdevices and visual barriers to stop individuals withdementia from escaping or wandering away from theunit. To OTA’s knowledge, the frost research oninterventions of this kind was a study conducted inthe geriatric ward of a psychiatric hospital (198).


That study found that when strips of tape wereplaced in any of four different grid patterns on thefloor in front of the exit doors, the frequency withwhich demented patients approached and touchedthe doors decreased significantly. Two other studieshave attempted unsuccessfully to replicate theseresults in special care units (75,77,316). Both studiesfound that use of strips of tape in front of the exitdoors resulted in a temporary increase but nosignificant long-term change in the number of timesper day the special care unit residents opened the exitdoors.

Other interventions to stop individuals with de-mentia from escaping or wandering away have alsobeen tested in special care units. Chafetz found thatuse of a second spring-loaded latch on the exit doorsstopped residents of one special care unit fromopening the doors (75,77). Namazi et al. found thatconcealing the exit doors with either a beige cloth ora green patterned cloth stopped residents of anotherspecial care unit from opening the exit doors (316).Two other interventions-painting the door knobthe same color as the door and using a door knobcover that allows the knob to turn only whenpressure is applied-also decreased the frequencywith which special care unit residents opened theexit door (316). The latter two interventions were notas effective as concealing the doorknob with apieceof cloth, however.

Researchers at the Corinne Dolan Alzheimer’sCenter in Chardon, OH, have conducted studies onmany other features and interventions in special careunits. The center was designed to facilitate researchof this kind. It has 2 separate but essentially identicalwings, each housing 12 residents, so alternateinterventions that require physical design or othermodifications to the unit can be tested in the 2 wingssimultaneously and their outcomes compared. Eightinterventions studied recently at the center are:

1.

2.

use of “significant” vs. “nonsignificant”personal belongings in showcases next toresidents’ rooms to help them identify theirrooms;

use of clearly visible toilets in residents’ roomsvs. toilets that are concealed behind a curtainto help them locate the bathroom and remaincontinent;

3.

4.

5.

6.

7.

8.

use of certain types, colors, and placements ofsigns to help residents locate the bathroomsand remain continent;use of partitions of various heights in thedining room and the activity rooms to reducedistractions for residents;use of unlocked vs. locked doors to an en-closed courtyard to enhance residents’ sense ofautonomy;use of special closet doors that allow residentsto see only one set of clothing at a time vs.ordinary closet doors to help residents dressthemselves independently;use of refrigerators with glass doors vs. ordi-nary refrigerators with opaque doors to allowresidents to see food and thereby encouragethem to eat when they are hungry; anduse of familiar tasks (e.g., washing dishes anddusting) vs. unfamiliar tasks (e.g., untanglinga box of hangers) to engage residents’ attentionand sustain their interest (314).

Results of some of these studies were published inlate 1991 (317), and results of the other studies willbe published in 1992.

The Dementia Study Unit in the Geriatric Re-search, Education, Clinical Center (GRECC) at theE.N. Rogers Memorial Veterans Hospital inBedford, MA, has also conducted studies on manyparticular interventions in special care units. TheDementia Study Unit includes three special careunits that serve elderly veterans with dementia. Theinterventions evaluated in the Dementia Study Unitinclude:

●

●

●

●

●

use of a hospice-like approach in the care of 40severely demented special care unit residents(474);substitution of normal feeding for tube feedingin six special care unit residents who werebeing tube fed on admission to the unit (475);use of a few beds on one of the special care unitsto provide respite care for 22 veterans withdementia who were still living in the commu-nity (238,405);use of antibiotics vs. palliative measures to treatfevers in special care unit residents (135); anduse of dietary changes and enforced rest periodsto maintain normal body weight in six specialcare unit residents who paced constantly (376).

Studies to evaluate the impact of other features andinterventions have been conducted or are underway


in special care units at several other VA medicalcenters (159).

An analysis of the results of studies of particularfeatures or interventions in VA and nonVA specialcare units and a comparison of these results with theresults of similar studies conducted in nonspecial-ized nursing home units and other residential andnonresidential care settings is beyond the scope ofthis report. The important point is that the existenceof special care units probably encourages research toevaluate particular features and interventions. It iseasier and more efficient to conduct this type ofresearch in a special care unit, in part because all theresidents have dementia. In addition, as discussed inchapter 1, the existence of special care units focusesattention on the special needs of nursing homeresidents with dementia and thereby encouragesresearch to evaluate particular features and interven-tions to address those needs.

Research on particular features and interventionsmay help to explain the findings of studies thatevaluate the overall impact of special care units. Ifparticular features or interventions are shown to beeffective or ineffective in general or for certain typesof residents, those findings may explain the contra-dictory results of studies that evaluate the overallimpact of the units. More importantly, however, thisresearch may identify features and interventions thatcan be used not only in special care units but also innonspecialized nursing home units and other resi-dential and nonresidential care settings to improvethe care of individuals with dementia.

STUDIES THAT EVALUATE THEEFFECTS OF SPECIAL CARE UNITS

ON UNIT STAFF MEMBERSOTA is aware of four studies that evaluate the

effect of special care units on unit staff membersover time. Two frequently cited reasons for estab-lishing special care units are: 1) a belief that trainingabout dementia can be more easily and effectivelyprovided for the staff of a special care unit than forthe staff of nonspecialized nursing home units andtherefore that special care unit staff members arelikely to be more knowledgeable about dementia,and 2) a belief that it is less stressful for staffmembers to work with residents with dementia on aspecial care unit than on nonspecialized units. Threeof the available studies measured the effect of aspecial care unit on staff members’ knowledge about

dementia; two studies measured the effect of aspecial care unit on staff stress and burnout, and onestudy measured the extent to which special care unitand other staff members were disturbed by thebehavioral symptoms of residents with dementia.

Chafetz and West compared knowledge aboutdementia among 1) 11 staff members of one specialcare unit, 2) 13 staff members of nonspecializedunits in the same nursing home, and 3) 30 staffmembers of nonspecialized units in another nursinghome (81). During the 9- to 12-month period of thestudy, the special care unit staff members partici-pated in 10 weekly training sessions about dementia.The staff of the nonspecialized units did not receivethis training. All staff members’ knowledge aboutdementia was measured at the beginning and end ofthe study using a 20-item true-false quiz. The studyfound that despite the training received by thespecial care unit staff members, there were nosignificant differences among the three groups ofstaff members in the extent to which their test scoreschanged over time. The researchers concluded thatthe training provided for the special care unit staffmembers did not have a significant or lasting effecton their knowledge about dementia.

Maas and Buckwalter compared knowledge aboutdementia among 21 special care unit staff membersand 55 staff members of nonspecialized units in thesame facility (265). During the frost 3 months afterthe special care unit opened, its staff members andthe staff members of the nonspecialized unitsreceived 80 hours of training about dementia. Thestudy found that during the baseline period beforethe unit opened and throughout the course of thestudy, the special care unit staff members scoredslightly higher than the staff members on thenonspecialized units on a 33-item test of knowledgeof dementia, but this difference was not statisticallysignificant. There was also no statistically signifi-cant change in the scores of the special care unit staffmembers over the course of the study. Registerednurses (RNs) scored significantly higher than li-censed practical nurses (LPNs), nurse aides, andnon-nursing staff members, regardless of whetherthey worked on the special care unit or the nonspe-cialized units.

Cleary et al. compared knowledge of dementiaamong the staff of a 16-bed special care unit at onepoint 3 months before the unit opened and again 3months after it opened (88). Despite a staff training

328-405 - 92 - 5 Ql 3


program conducted during this time period, thestudy found no significant change in the staffmembers’ knowledge of dementia. This study didnot have a control group.

With respect to job satisfaction, Cleary et al.compared special care unit staff members’ scores ona questionnaire administered at one point 3 monthsbefore the 16-bed unit opened and again 3 monthsafter it opened (88). The 83-item questionnaireaddressed 6 aspects of job satisfaction (workingconditions, professional considerations, professionalpreparation, emotional climate, supervision, andsocial significance). The study found no significantchange in the staff members’ scores before and afterthe unit opened. On the positive side, the researcherspoint out that the staff members did not seem to reactnegatively to the isolation of the special care unit, asmight have been expected. Moreover, in open-endedinterviews, some staff members reported they werespending much less time retrieving patients whowandered away from the unit and were experiencingfewer interruptions when caring for patients. Nomeasurements were made of the latter two outcomes.

Using the same 83-item questionnaire, Maas andBuckwalter compared job satisfaction among 21special care unit staff members and 55 staff memberson nonspecialized units in the same facility (265).The study found job satisfaction was “moderatelyhigh” for both groups of staff members during thebaseline period before the special care unit openedand throughout the course of the study. There waslittle difference between the scores of the two groupsof staff members on the questionnaire as a whole orany of its six subscales. RNs scored significantlyhigher than LPNs, nurse aides, and non-nursing staffmembers on one of the subscales-satisfaction withprofessional preparation-regardless of whether theyworked on the special care unit or the nonspecializedunits. After the special care unit opened, LPNs,nurse aides, and other non-nursing staff memberswho worked on the special care unit scored signifi-cantly higher on the same subscale than comparablestaff members on the nonspecialized units. Therewere no significant differences for the staff memberson any of the other subscales.

With respect to staff stress, Maas and Buckwalterfound a generally low level of stress among 15special care unit staff members and 49 staff memberson nonspecialized units in the same facility bothbefore and after the special care unit opened (265).

The special care unit staff members consistentlyreported less stress than the staff members on thenonspecialized units. Nevertheless, the study foundthat after the special care unit opened, its staffmembers experienced a statistically significant re-duction in stress, whereas the staff members on thenonspecialized units experienced an increase instress. The special care unit staff members also hadsomewhat lower scores than the other staff memberson a test of three indicators of burnout-emotionalexhaustion, depersonalization, and lack of a feelingof personal accomplishment; this difference inscores was statistically significant for deperso-nalization but not for the other two indicators. Thestudy’s findings with respect to use of sick leave,leave without pay, and overtime are still beinganalyzed (54).

Finally, in their study of special care units andnonspecialized units in the same four nursing homes,Holmes et al. compared staff members’ attitudestoward residents’ behavioral symptoms (195). At thebeginning of the study, although the special care unitresidents had significantly more behavioral symp-toms than the demented residents of the nonspecial-ized units, there was no significant differencebetween the staff members in the two types of unitsin the extent to which they reported being disturbedby the residents’ behavioral symptoms. After 6months, there was still no significant differencebetween the staff members in the two types of unitsin this regard.

In addition to these four longitudinal studies, twodescriptive studies have addressed the issue of staffstress in special care units. One study that comparedstaff stress on two special care units found that stresswas related to the severity of the residents’ impair-ment (506). Staff members on the unit with moreimpaired residents were more likely to report feelinghighly stressed than staff members on the unit withless impaired residents. Interestingly, many of thespecific types of stressors identified by staff mem-bers on both units were unrelated to residentcharacteristics and therefore might be expected tooccur as frequently in work with nondementedresidents and on nonspecialized nursing home unitsas on special care units. In another study of anonrandom sample of special care units, the re-searchers concluded staff stress was related tostaff-to-resident ratios: units with less staff perresident were much more likely than units with more


staff per resident to report problems with staff stress(332).

The University of North Carolina study of 31randomly selected special care units and 32 matchednonspecialized units in 5 States found staff turnoverwas significantly lower for RNs and LPNs on thespecial care units (291). Turnover was also lower fornurse aides on the special care units, but thisdifference was not statistically significant. Accurateinterpretation of these findings is difficult becausethey are based on data collected at one point in time.It is possible that pre-existing differences betweenthe staff members on the two types of units ratherthan differential effects of the units account for thedifferences in staff turnover.

I n summary, the three longitudinal studies thatmeasured staff knowledge of dementia found nostatistically significant effect of the special careunits. One of the two studies that measured jobsatisfaction found a statistically significant improve-ment in the scores of LPNs, nurse aides, and othernon-nursing staff of the special care unit on one ofsix aspects of job satisfaction. There were no othersignificant effects of the special care units on jobsatisfaction. The one longitudinal study that meas-ured staff stress and burnout found a statisticallysignificant reduction in stress among the special careunit staff members and a statistically significantdifference between the special care unit staff mem-bers and other staff members on one of threeindicators of burnout. There were no other signifi-cant effects of the special care unit on staff stress orburnout. Lastly, the study that measured the extentto which staff members were disturbed by residents’behavioral symptoms found no significant differ-ences over time for the special care unit staffmembers and no significant difference between thespecial care unit staff members and other staffmembers in this respect.

STUDIES THAT EVALUATE THEEFFECTS OF SPECIAL CARE UNITS

ON RESIDENTS’ FAMILIESOTA is aware of four studies that evaluate the

effect of a special care unit on residents’ familiesover time. One study conducted in Australia com-pared the psychological status of 12 family membersof individuals with dementia who were admitted toa special care unit and 10 family members ofindividuals with dementia who were placed on the

waiting list and offered in-home services (489). Atthe beginning of the study, the family members inboth groups showed high levels of symptoms onpsychological tests of anxiety, depression, guilt, andgrief. After 3 months, family members of the specialcare unit residents showed a statistically significantreduction in symptoms on all the tests. In contrast,family members of the individuals who had beenplaced on the waiting list showed little change in anyof the symptoms, except guilt, which was slightlyreduced.

Chafetz measured knowledge about dementia andattitudes toward older people among 12 familymembers of residents of a 30-bed special care unit(76). Anxiety and depression were measured among9 of the 12 family members. The study found nostatistically significant changes over a l-year periodin any of these areas, although there were somenonsignificant improvements in each of the areasexcept anxiety. This study had no control group.

Cleary et al. measured family satisfaction withcare among 11 family members of individuals withdementia who were moved from a nonspecializedunit to a new special care unit in the same nursinghome (88). Family satisfaction with the care pro-vided by the nonspecialized unit was quite high, asmeasured by a 38-item satisfaction questionnaire;nevertheless, family satisfaction increased signifi-cantly in the frost 3 months after the special care unitopened. This study had no control group.

In addition to the questionnaire, Cleary et al.conducted open-ended telephone interviews withthe family members (88). According to the studyreport, only 7 of the 11 family members visited theirrelative with dementia frequently enough in thespecial care unit to be able to respond in any detailto the open-ended questions. These seven familymembers reported their relative with dementia wasless agitated in the special care unit than he or shehad been in the nonspecialized unit. Five of theseven family members also reported they were betterable to communicate with their relative in the specialcare unit. None of the seven family membersexpressed concern that the special care unit wasisolated, and none described difficulties in visiting.

Lastly, Maas and Buckwalter compared familysatisfaction with care at 2-month intervals over al-year period among family members of special careunit residents and residents with dementia in non-specialized units of the same facility (265). Due to


subject attrition and replacement, the number offamily members varied over the course of the study,from 17 to 22 family members of special care unitresidents and from 12 to 21 family members ofindividuals with dementia in nonspecialized units.Both groups of family members reported fairly highlevels of satisfaction with the care their relative wasreceiving. They tended to be most satisfied with theirrelative’s overall care and least satisfied with thenursing care he or she was receiving. Familymembers of the special care unit residents hadsomewhat higher satisfaction scores than familymembers of the individuals with dementia in thenonspecialized units, but these differences were notstatistically significant.

In addition to these four longitudinal studies, anumber of cross-sectional studies have comparedvarious characteristics of families of special careunit residents and families of individuals withdementia in nonspecialized nursing home units.Since the findings of these studies are based on datacollected at one point in time, it is unclear whetherthey are attributable to the effect of the special careunits vs. the nonspecialized units or to preexistingdifferences between the two groups of families.

The study by Chafetz discussed above had across-sectional component that compared knowl-edge of dementia, attitudes toward older people,anxiety, depression, and guilt among three groups offamily members: 1) 18 family members of specialcare unit residents, 2)7 family members of residentsof a nonspecialized nursing home unit that servedboth demented and nondemented residents, and 3) 8family members of residents of a unit that servedonly individuals with dementia but provided nospecial services (76). The study found no significantdifferences between family members of the specialcare unit residents and family members of residentsof the two nonspecialized units in any of themeasured characteristics. Interestingly, all threegroups of family members had low levels of anxiety,depression, and grief. Moreover, in comparison withfamily members of the individuals in the segregatedbut nonspecialized unit, family members of thespecial care unit residents were significantly moredepressed and anxious.

A small pilot study done by researchers at theUniversity of North Carolina found that families ofindividuals with dementia in one special care unitwere, on average, more likely than families of

individuals with dementia in two nonspecializedunits to be satisfied with the physical aspects of theunit and the care their relative received and to feeltheir relative with dementia was better off in the unitthan at home (292). The findings differed for the twononspecialized units, however. Compared with fam-ilies of the special care unit residents, families ofindividuals with dementia in one of the nonspecial-ized units were as satisfied with the care theirrelative received, more satisfied with the physicalaspects of the care environment, and more likely tobelieve their relative was better off in the unit thanat home. In contrast, families of the residents in theother nonspecialized unit were less likely thanfamilies of the special care unit residents to besatisfied with the physical aspects of the unit and lesslikely to believe their relative was better off in theunit than at home.

Another small pilot study of two special care unitsand two nonspecialized nursing home units inCalifornia found that families of the special care unitresidents were less likely than families of residentsof the nonspecialized units to be satisfied with thephysical aspects of the unit and less likely to believetheir relative was better off in the unit than at home(256). Families of the special care unit residentswere also less likely to be satisfied with the numberof staff members, the adequacy of the care receivedby their relative, and the willingness of staffmembers to discuss the family members’ concerns.

Finally, the University of North Carolina study of31 randomly selected special care units and 32nonspecialized nursing home units in 5 States foundthat families of the special care unit residents weresignificantly more likely than families of individualswith dementia in the nonspecialized units to visittheir relative regularly (413).

Accurate interpretation of the findings of thesecross-sectional studies is difficult because the find-ings are based on data collected at one point in timeand therefore cannot be attributed with certainty tothe differential impact of the special care units vs.the nonspecialized units. It is possible, for example,that the finding of the University of North Carolinastudy--i.e., that families of special care unit resi-dents were significantly more likely than families ofindividuals in the nonspecialized units to visit theirrelative with dementia—reflects pre-existing differ-ences between the two groups of families rather thanthe impact of programs and policies of the two types


of units that might encourage or discourage familyvisiting.

Insummary, two of the four longitudinal studiesthat evaluate the impact of special care units onresidents’ families had statistically significant posi-tive findings. One of the studies found a significantincrease in family members’ satisfaction with care,and the other study found a significant reduction infamily members’ feelings of anxiety, depression,guilt, and grief. The other two longitudinal studiesfound no significant differences in these areas. Thetwo studies that had statistically significant positivefindings were much shorter than the two studies thatdid not have significant positive findings (3 monthsvs. 1 year, respectively).

One of the four cross-sectional studies had astatistically significant positive finding with respectto the frequency of visiting by families of the specialcare unit residents, but it is unclear whether thisfinding is attributable to the impact of the specialcare units. The findings with respect to familysatisfaction with care are contradictory, perhapsreflecting differences among the particular units inthe study samples.

CONCLUSIONBased on the preceding review of findings from

the available evaluative studies, some conclusionscan be drawn about the effectiveness of special careunits. Table 4-3 lists OTA’s conclusions from thestudies’ findings. In general, these studies show fewpositive outcomes of special care units. With respectto residents’ ability to perform activities of dailyliving, the findings of studies that did not use acontrol group are contradictory. Three of the studiesthat used a control group and measured residents’ability to perform activities of daily living found nosignificant effect of the special care units. Incontrast, one study (392) found less decline in abilityto perform activities of daily living over a l-yearperiod among the special care unit residents thanamong residents of the nonspecialized units. Like-wise, three of the studies that used a control groupand measured residents’ behavioral symptoms foundno significant effect of the special care units. Incontrast, one study (265) found fewer catastrophicreactions among the special care unit residents thanamong residents of the nonspecialized units. Onlyone of the four studies that measured the effect of aspecial care unit on the unit staff members found any

significant positive outcomes. The findings withrespect to family members’ feelings of depression,anxiety, and guilt and their satisfaction with care arecontradictory.

As noted at the beginning of this chapter, the factthat many of the available evaluative studies do notshow significant positive outcomes of special careunits is surprising. The failure of most of the studiesto show the expected positive outcomes is attributedby some commentators to methodological problems.The preceding discussion has noted many methodo-logical problems with the available studies. Asdiscussed in chapter 1, there are also numerousdifficult conceptual and methodological issues in-volved in designing special care unit research. Theseconceptual and methodological issues include un-certainty about which outcomes should be meas-ured; the difficulty of measuring certain outcomes inindividuals with dementia; the lack of validatedinstruments for measuring these outcomes; thedifficulty of identifying and correcting for differ-ences between special care unit residents andresidents of nonspecialized units that could affectthe study outcomes; and attrition in sample sizesover time which means even studies that started witha sample of a respectable size may end up withusable data on so few individuals that only a verystrong effect of the special care unit could bedetected.

Methodological problems and the difficult con-ceptual and methodological issues involved indesigning special care unit research probably ex-plain part of the failure of many of the availablestudies to find positive outcomes. Moreover, it mustbe noted that very few evaluative studies of specialcare units have been conducted thus far. Thepreceding sections discuss a total of only 15 studiesthat have measured impacts on residents and a fewadditional studies that have measured impacts onresidents’ families and/or unit staff members. On theother hand, some of the available studies, particu-larly the studies that used a control group, are welldesigned and carefully conducted, despite methodo-logical difficulties. The special care units theystudied incorporated the patient care philosophies,staff training, programmingg, and physical designfeatures recommended by special care unit advo-cates, and the researchers used accepted statisticalmethods to correct for baseline differences amongthe subjects that could affect the study outcomes.Thus, it is unlikely that the failure of these studies to


Table 4-3-OTA’S Conclusions From the Evaluative Studies of Special Care Units

● Evaluative studies of special care units that did not use a control group have found a variety of positiveoutcomes in special care unit residents. If contradictory findings are excluded, the positive outcomes foundin more than one of these studies are decreased nighttime wakefulness, improved hygiene, and weight gain.

● A few evaluative studies of special care units that did not use a control group have found improvements overtime in the important areas of residents’ ability to perform activities of daily living and residents’ behavioralsymptoms, but an equal number of studies of this type have not found such improvements.

● For of the six evaluative studies of special care units that used a control group have found no statisticallysignificant differences between the special care unit residents and the control group subjects in the followingareas: cognitive abilities, ability to perform activities of daily living, behavioral symptoms, mood, and rateof hospitalization. Two of the six studies of this type found certain statistically significant positive residentoutcomes: one study found that over a l-year period, 14 special care unit residents showed significantly lessdecline than 14 residents with dementia in nonspecialized nursing home units in their ability to performactivities of daily living; the other study found that 13 special care unit residents had significantly fewercatastrophic reactions than 9 residents with dementia in nonspecialized nursing home units; the 13 specialcare unit residents also interacted significantly more with the unit staff members. These two studies had noother statistically significant positive resident outcomes.

● Evaluative studies of particular features and interventions in special care units have focused primarily onmethods to deter individuals with dementia from escaping or wandering away from the unit. The mostsuccessful methods identified thus far are latches and locks the residents cannot open and various methodsof concealing the exit doors.

. Three of the four studies that evaluated the impact of special care units on the unit staff members found nostatistically significant effects. One of the 4 studies of this type found a statistically significant reduction instaff stress among 15 special care unit staff members and a statistically significant difference between the15 special care unit staff members and 49 staff members on nonspecialized nursing home units in one ofthree indicators of burnout. The study also found a statistically significant improvement in the scores of 16special care unit staff mernbers (licensed practical nurses, nurse aides and other non-nursing staff members)on 1 of 6 indicators of job satisfaction. None of the three studies that measured staff knowledge of dementiafound any significant effect of the special care unit.

. Two of the four studies that evaluated the impact of special care units on the residents’ families hadstatistically significant positive findings. One of the studies found a significant increase in the familymembers’ satisfaction with the care provided for their relative with dementia, and the other study found asignificant reduction in the family members’ feelings of anxiety, depression, guilt, and grief. The other twostudies of this type found no significant changes in either of these areas. One cross-sectional study foundthat families of special care unit residents are more likely than families of individuals with dementia innonspecialized units to visit their relative regularly, but it is not clear whether this finding is attributable tothe effect of the special care unit or to preexisting differences between the two groups of families.

SOURCE: Offke of ‘lkhnology Assessment, 19924

show positive outcomes is due entirely to methodo- effect of special care units is on residents’ quality oflogical problems. Alternate explanations include thepossibility that some or many of the featuresrecommended for special care units are not effectiveand the possibility that some of the recommendedfeatures have a positive effect on some or allresidents, families, and staff members, that otherfeatures have a negative effect, and that thesepositive and negative effects cancel each other out.Still another possibility is that the primary positive

life-an outcome that is difficult to define opera-tionally and one that has not been measured directlyin any of the studies conducted thus far. Furtherresearch is needed to differentiate among these andother possible explanations.

Research on specific interventions in special careunits may help to explain the findings of studies thatevaluate the overall effect of the units by showingthat certain interventions have positive outcomes


and others do not. This type of research is alsoimportant because some and perhaps many interven-tions that are shown to be effective in special careunits can also be used in nonspecialized nursinghome units, residential care facilities, and othersettings to improve the care of individuals withdementia in these settings.

Finally, it is important to note certain findings ofseveral of the studies discussed in this chapter thatdo not fit with widely held beliefs about nursinghome residents with dementia, their families, andnursing home staff members who work with resi-dents with dementia:

three studies found that the incidence of behav-ioral symptoms was much lower than expectedamong residents with dementia (22,265,312);one study found that three groups of familymembers—family members of special care unitresidents, family members of residents of anonspecialized nursing home unit, and familymembers of residents of a unit in which

●

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individuals with dementia were segregated butno special services were provided—had muchlower levels of anxiety, depression, and guiltthan expected (76);two studies found moderately high familysatisfaction with the care provided for individu-als with dementia in nonspecialized nursinghome units (88,265,266); andone study found that staff members in fourspecial care units and four nonspecializednursing home units were not particularly dis-turbed by the residents’ behavioral symptoms(195).

It is unclear whether these findings reflect uniquecharacteristics of particular study samples or aremore generally representative. Certainly, if thebaseline levels of behavioral symptoms amongresidents, negative feelings among family members,and distress among staff members are low in generalor in particular study samples, it is unrealistic toexpect large positive changes in a special care unit.

Chapter 5

Regulations And Guidelines ForSpecial Care Units

ContentsPage

INTRODUCTION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 133THE EXISTING REGULATORY STRUCTURE FOR NURSING HOMES . . . . . . . . . 134

Federal Regulations for Medicare and Medicaid Certification of Nursing Homes . . . 134State Licensing Regulations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 138State Certificate of Need Regulations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 138Other State and Local Government Regulations That Apply to Nursing Homes . . . . . 138Survey and Certification Procedures . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 139State Long-Term Care Ombudsman Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 139S ummary and Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 140

STATE REGULATIONS AND OTHER STATE POLICIES FORSPECIAL CARE UNITS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 140Six States’ Regulations for Special Care Units . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 141States That Are Developing or Considering Developing Regulations for

Special Care Units . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . . . . . . . . . . . . 146States That Have Developed or Are Developing Guidelines for Special Care

Units or for the Care of People With Dementia in All Nursing Homes . . . . . . . . . . . 147States That Have Certificate of Need Exceptions for Special Care Units . . . . . . . . . . . 148Other State Policies for Special Care Units . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 149summary and Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 149

SPECIAL CARE UNIT GUIDELINES DEVELOPED BY OTHER PUBLICAND PRIVATE ORGANIZATIONS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 151The American Association of Homes for the Aging-’ ‘Best Practices for Special

Care Programs for Persons With Alzheimer’s Disease or a Related Disorder” . . . 151The Massachusetts Alzheimer’s Disease Research Center—’ Blueprint for a

Specialized Alzheimer’s Disease Nursing Home” . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 152The Alzheimer’s Disease Education and Referral Center—’ ‘Standards for

Care for Dementia Patients in Special Care Units” . . . . . . . . . . . . . . . . . . . . . . . . . . . . 152The University of South Florida’s Suncoast Gerontology Center—"Draft Guidelines

for Dementia Specific Care Units (DSCUs) for Memory Impaired Older Adults” . 152The University of Wisconsin-Milwaukee’s Center for Architecture and Urban

Planning Research-’ Environments for People With Dementia: Design Guide” . 153The Alzheimer’s Association Legislative Principles and Guidelines for

Special Care Units . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 153The Alzheimer’s Society of Canada-Forthcoming Guidelines . . . . . . . . . . . . . . . . . . . . 153The Alzheimer’s Coalition of Connecticut-Forthcoming Guidelines . . . . . . . . . . . . . . 153U.S. Department of Veterans Affairs-Forthcoming Guidelines . . . . . . . . . . . . . . . . . . . 154Multi-Facility Nursing Home Corporations-Special Care Unit Guidelines . . . . . . . . 154The Joint Commission on Accreditation of Healthcare Organizations-Draft

Surveyor Guidelines . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 154Summary and Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 155

CONCLUSION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 155

FigureFigure Page5-1. Minimum Data Set for Nursing Home Resident Assessment and

Care Screening (MDS) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 137

Chapter 5

Regulations And Guidelines For Special Care Units

INTRODUCTIONIn response to concerns about the diversity of

existing special care units, the lack of standards toassist families, nursing home surveyors, and othersin evaluating the units, and widespread allegationsthat some special care units provide nothing specialfor their residents, six States have developed regula-tions for special care units, and other States are in theprocess of doing so. The Alzheimer’s Associationhas developed legislative principles for special careunits to assist States in formulating regulations. Inaddition, the Alzheimer’s Association and manyother public and private organizations have devel-oped or are in the process of developing guidelinesfor special care units.

These regulations and guidelines are or would besuperimposed on the existing regulatory structurefor nursing homes—a complex, multi-layered struc-ture

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that includes six major components:

Federal regulations for Medicare and Medicaidcertification of nursing homes,State licensing regulations for nursing homes,State certificate of need regulations for nursinghomes,

other State and local government regulationsthat apply to nursing homes,

the survey and certification procedures associ-ated with each of these types of regulations, andthe oversight and advocacy procedures of eachState’s Long-Term Care Ombudsman Program.

In addition to these six components, Federal,State, and local government regulations for nursinghomes incorporate standards established by privateorganizations, such as the National Fire ProtectionAssociation’s Life Safety Codes. Because thesestandards are incorporated into government regula-tions, they become part of the regulatory structure.Lastly, about 5 percent of nursing homes in theUnited States choose to be accredited by a privateorganization, the Joint Commission on Accredita-tion of Healthcare Organizations (JCAHO) (214).These nursing homes are surveyed by JCAHO andmust meet JCAHO standards, as well as Federal,State, and local government requirements.

The regulatory structure for nursing homes iscurrently undergoing massive changes due to theimplementation of the nursing home reform provi-sions of the 1987 Omnibus Budget ReconciliationAct (OBRA-87). The provisions of OBRA-87 per-tain to the Federal regulations for Medicare andMedicaid certification of nursing homes and thesurvey and certification procedures associated withthose regulations, but the changes mandated byOBRA-87 are so extensive they affect other compo-nents of the regulatory structure as well.

This chapter describes the existing regulatorystructure for nursing homes, including the changesmandated by OBRA-87. It discusses State regula-tions and other State policies for special care units.It also describes the guidelines for special care unitsthat have been developed or are being developed byvarious public and private organizations.

The policy question addressed by the chapter iswhether there should be special regulations forspecial care units. On the one hand, the rapidproliferation of special care units, the lack ofstandards to help families, nursing home surveyors,and others evaluate the units, and the pervasiveallegations that some special care units providenothing special for their residents argue for thedevelopment of regulations. On the other hand, thecurrent lack of agreement about the particularfeatures that are necessary in a special care unit andthe lack of research-based evidence of the effective-ness of any particular features make it difficult todetermine what the regulations should say beyondgeneral statements about goals and principles and alisting of the issues that require special considerationin the care of nursing home residents with dementia(e.g., physical design, staff training, security, activ-ity programs, family involvement, and residentrights).

As this chapter points out, many of the FederalMedicare and Medicaid regulations mandated byOBRA-87 are directly relevant to the complaints andconcerns expressed by families and others about thecare provided by most nursing homes for individualswith dementia. The OBRA regulations rarely men-tion cognitive impairment or dementia, but theresident assessment system developed to implement

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OBRA-87 focuses on the assessment of a resident’scognitive status and the identification of problemsand care needs that are common among nursinghome residents with dementia. OBRA regulationsrequire that residents’ needs be assessed, using thisor a similar assessment system, and that once theirneeds are identified, appropriate services be pro-vided to meet those needs.

The regulations for special care units now in effectin six States were not developed in the context of thenew OBRA regulations. The six States’ regulationsaddress some common areas, but their requirementsin each of these areas vary, and each State’sregulations include requirements for features notincluded in the other States’ special regulations.Moreover, some of the requirements are very spe-cific. The inclusion of requirements for particularfeatures in special care unit regulations implies thatthese features are important in the care of nursinghome residents with dementia; that other featureswhich are not required by the regulations are notimportant in the care of these residents; and that thelimited resources of nursing homes should beexpended for the required features rather than otherfeatures. As yet, however, there is no consensusabout the particular features that are necessary in aspecial care unit and no evidence from research tosupport requirements for any particular features.

OTA concludes from the analysis in this and thepreceding chapters that from a Federal perspective,the objective of improving nursing home care forindividuals with dementia will be better served atpresent by initiatives to develop greater knowledgeand agreement about the particular features that areimportant in the care of nursing home residents withdementia, to determine how those features fit intothe regulatory framework created by OBRA-87, andto support and monitor the implementation ofOBRA-87 than by the establishment of new Federalregulations for special care units. Many of the sameconsiderations that lead to this conclusion wouldseem to apply equally to the development of Stateregulations for special care units.

THE EXISTING REGULATORYSTRUCTURE FOR NURSING HOMES

Nursing homes are said to be among the mosthighly regulated entities in this country (201).Federal State, and local government regulationsapply to virtually all facets of nursing homes’

physical design and operation. Nursing homes areinspected at least annually by surveyors or teams ofsurveyors who evaluate the facilities’ compliancewith one or more of these types of regulations. Staffmembers or volunteers representing the State’sLong-Term Care Ombudsman Program also visitnursing homes to investigate and resolve complaintsabout resident care. This section describes each ofthe components of the regulatory structure.

Federal Regulations for Medicare andMedicaid Certification of Nursing Homes

The legislation that created the Medicare andMedicaid programs gave the Federal Governmentthe authority to establish requirements for nursinghomes that choose to participate in the programs.Nursing homes must be certified as meeting theserequirements in order to receive Medicare or Medic-aid payment for any of their residents. As of 1985,75 percent of the nursing homes in this country werecertified for Medicare, Medicaid, or both, and thesefacilities accounted for 89 percent of all nursinghome beds (467).

The requirements for Medicare and Medicaidcertification of nursing homes have been changedseveral times in the past two decades, most recentlyas a result of OBRA-87 and amendments to OBRA-87 enacted since 1987. Prior to the implementationof OBRA-87, there were separate certification re-quirements for skilled nursing facilities (SNFs)participating in the Medicare and Medicaid pro-grams and intermediate care facilities (ICFs) partici-pating in the Medicaid program. Effective in 1990,OBRA-87 eliminated the distinction between SNFsand ICFs for Medicaid purposes. A single set ofrequirements for Medicaid certification of nursingfacilities (NFs) is now in effect. Separate but verysimilar requirements for Medicare certification ofSNFs are also in effect (456,225).

The current requirements for Medicare and Medic-aid certification of nursing homes were first pub-lished by the Health Care Financing Administration(HCFA) in February 1989 (462). The final version ofthese requirements was published by HCFA inSeptember 1991 (463). The requirements addressresidents’ rights, residents’ quality of life, residentassessment, care planning, staff credentials, stafftraining, use of physical restraints, use of psy-chotropic and other medications, quality of care,nursing, physician, dietary, social work, dental, and

Chapter 5--Regulatiom And Guidelines For Special Care Units ● 135

rehabilitative services, activities, handling of resi-dents’ funds, record-keeping, physical plant, pread-mission screening, and other areas.

Many of the requirements are directly relevant tothe complaints and concerns of families and othersabout the care provided by most nursing homes forindividuals with dementia. (See table 1-1 inch. 1 fora list of these complaints and concerns.) The mostrelevant of the requirements are quoted here from theSeptember 1991 version of the “Requirements forLong-Term Care Facilities” (463).

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“The facility must care for its residents in amanner and in an environment that promotesmaintenance or enhancement of each residentsquality of life.”‘‘The facility must promote care for residents ina manner and in an environment that maintainsor enhances each resident’s dignity and respectin full recognition of his or her individuality. ’“The facility must conduct initially and period-ically a comprehensive, accurate, standardized,reproducible assessment of each resident’sfunctional capacity.’“The facility must develop a comprehensivecare plan for each resident that includes mea-surable objectives and timetables to meet are-sident’s medical, nursing, mental, and psycho-social needs that are identified in the compre-hensive assessment. ’“A comprehensive care plan must be preparedby an interdisciplinary team, that includes theattending physician, a registered nurse withresponsibility for the resident, and other appro-priate staff in disciplines as determined by theresident’s needs, and to the extent practicable,the participation of the resident, the resident’sfamily or the resident’s legal representative. ’“Each resident must receive and the facilitymust provide the necessary care and services toattain or maintain the highest practicable physi-cal, mental, and psychosocial well-being, inaccordance with the comprehensive assessmentand plan of care. ’“Based on the comprehensive assessment of aresident, the facility must ensure that a resi-dent’s abilities in activities of daily living donot diminish unless circumstances of the indi-vidual’s clinical condition demonstrate thatdiminution was unavoidable.’“Based on the comprehensive assessment of aresident, the facility must ensure that a resident

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whose assessment did not reveal a mental orpsychosocial adjustment difficulty does notdisplay a pattern of decreased social interactionand/or increased withdrawn, angry, or depres-sive behaviors, unless the resident’s clinicalcondition demonstrates that such a pattern wasunavoidable.“The facility must provide for an ongoingprogram of activities designed to meet, inaccordance with the comprehensive assess-ment, the interests and the physical, mental, andpsychosocial well-being of each resident.”“If specialized rehabilitative services, such asbut not limited to physical therapy, speech-language pathology, occupational therapy, andhealth rehabilitative services for mental illnessand mental retardation, are required in theresident’s comprehensive plan of care, thefacility must:

1. provide the required services, or2. obtain the required services from an

outside...provider of specialized rehabil-itative services. ’

‘‘The resident has the right to be flee from anyphysical or chemical restraints imposed forpurposes of discipline or convenience, and notrequired to treat the resident’s medical symp-toms.’“Each resident’s drug regimen must be freefrom unnecessary drugs. An unnecessary drugis any drug when used:

1.

2.3.4.

5.

6.

. “Based on a comprehensive assessment of a

in excessive dose (including duplicatedrug therapy); orfor excessive duration; orwithout adequate monitoring; orwithout adequate indications for its use;orin the presence of adverse consequenceswhich indicate the dose should be re-duced or discontinued; orany combinations of the reasons above. ”

resident, the facility must ensure that:

1. residents who have not used antipsy-chotic drugs are not given these drugsunless antipsychotic drug therapy is nec-essary to treat a specific condition anddocumented in the clinical record, and


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2. residents who use antipsychotic drugsreceive gradual dose reductions and be-havioral interventions, unless clinicallycontraindicated in an effort to discontinuethese drugs.”

“The facility must provide: a safe, clean,comfortable, and home-like environment, al-lowing the resident to use his or her personalbelongings to the extent possible...(and in-cluding) adequate and comfortable lightinglevels in all areas; comfortable and safe temper-ature levels; ..(and) comfortable sound levels. ’“The resident has the right to retain and usepersonal possessions, including some furnish-ings, and appropriate clothing, as space per-mits, unless to do so would infringe upon therights or health and safety of other residents. ’“A facility must not use any individual work-ing in the facility as a nurse aide for more than4 months, on a full-time, temporary, per diem,or other basis, unless:

1. that individual has completed a trainingand competency evaluation program, or acompetency evaluation program approvedby the State, and

2. that individual is competent to providenursing and nursing-related services. ’

“The facility must provide regular perfor-mance review and regular in-service educationto ensure that individuals used as nurse aidesare competent to perform services as nurseaides. In-service education must include train-ing for individuals providing nursing andnursing-related services to residents with cog-nitive impairments” (463) (emphasis added).

With the exception of the last requirement, noneof these requirements mentions cognitive impair-ment or dementia. Many of the requirements refer,however, to residents’ needs as identified by therequired comprehensive assessment. If the compre-hensive assessment identifies the needs of residentswith dementia, the regulations require that theseneeds be met.

OBRA-87 mandated the development of a set ofcore items to be addressed in the required compre-hensive assessment. In 1988, HCFA contracted witha consortium of researchers at Research TriangleInstitute, Hebrew Rehabilitation Center for Aged,Brown University, and the University of Michiganto develop a resident assessment system that would

include these core items (308). The resulting assess-ment system consists of two parts: 1) the MinimumData Set, a 5-page resident assessment instrument,and 2) 18 Resident Assessment Protocols thatprovide additional information to assist nursinghome staff members in assessing and developingcare plans for residents with certain problems (309).States may use this assessment system or developone of their own, provided the system they developincorporates the core items (308).

The Minimum Data Set emphasizes the assess-ment of a resident’s cognitive status. Six questionsabout cognitive status appear on the first page of theassessment instrument, immediately after the basicidentifying information about the resident (309).(Fig. 5-1 shows the first page of the Minimum DataSet.) Other sections of the assessment instrumentinclude questions about problems and care needsthat pertain particularly to residents with dementia.One section asks, for example, whether the residentneeds ‘supervision, including oversight, encourage-ment, or cueing ‘‘ in order to perform activities ofdaily living (309). Another section asks about moodproblems (e.g., agitation and withdrawal) and be-havioral symptoms (e.g., wandering, verbal andphysical abusiveness, and socially inappropriate ordisruptive behavior). That section also asks whetherthe “behavior problem has been addressed by aclinically developed behavior management pro-gram. . .(not including) only physical restraints orpsychotropic medications” (309). Other sectionsask about the resident’s customary routine, theresident’s involvement and preferences in activities,the number of medications he or she is taking, thenumber of days in the preceding week he or she hasreceived antipsychotic, antianxiety, or antidepressantmedications, and the frequency of use of physicalrestraints.

A one-page form to be used for quarterly reviewof a resident’s comprehensive assessment alsoemphasizes cognitive status and certain problemsand care needs that pertain particularly to residentswith dementia (309). The form includes questionsabout memory, cognitive skills for daily decision-making, behavioral symptoms, the number of daysin the preceding week the resident has receivedantipsychotic, antianxiety, or antidepressant medi-cations, and the frequency of use of physicalrestraints. It also repeats the question about theresident’s need for ‘‘supervision, including over-

Chapter 5-Regulations And Guidelines For Special Care Units . 137

MINIMUM DATA SET FOR NURSING HOME RESIDENT ASSESSMENT AND CARE SCREENING (MDS)(Status in last 7 days, unless other time frame indicated)

SECTION A. IDENTIFICATION AND BACKGROUND INFORMATION

m-m-mmMend’I Day YearII Assessment

DATE

(FIrsQ (Mddb Irmnal) (Last) I

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sight, encouragement, or cueing” in order to per-form activities of daily living.

One of the 18 Resident Assessment Protocols ison dementia. The protocol provides additionalinformation about dementia to help nursing homestaff members assess the resident accurately anddevelop an appropriate care plan (309). Several otherResident Assessment Protocols address problemsand care needs that are relevant for nursing homeresidents with dementia, including delirium, psy-chosocial problems, behavioral symptoms, activi-ties, psychotropic drug use, and physical restraints.

Compared with other assessment instrumentsused in nursing homes in the past, the residentassessment system developed by the consortium,including the Minimum Data Set and the ResidentAssessment Protocols, places much greater empha-sis on assessment of residents’ cognitive status andthe problems and care needs that are common amongnursing home residents with dementia. Although theexistence of this resident assessment system doesnot guarantee that a resident’s needs will be accu-rately identified or, once identified, that the needswill be met, the existence of the system certainlymakes both outcomes more likely.

As of January 1992, all States were using theresident assessment system developed by the con-sortium (329). Eleven States had added some itemsto the Minimum Data Set.

State Licensing Regulations

Each State licenses nursing homes on the basis ofState standards. Although nursing homes thatchoose not to participate in the Medicare andMedicaid programs are not subject to FederalMedicare and Medicaid regulations, all nursinghomes are subject to State licensing regulations,including nursing homes that serve only private-payresidents (225,320).

State licensing regulations vary greatly. SomeStates have very complex, stringent, licensing regu-lations, whereas other States have simpler, lessstringent regulations (94,225,318). In 1984, one-fourth of the States were using the Federal Medicaidregulations for State licensing purposes (318).

Administrative rulings and interpretations of Statelicensing regulations are common. These adminis-trative rulings and interpretations become part of a

State’s licensing regulations and generally add totheir complexity.

Five States have changed their licensing regula-tions to add requirements for special care units, andone State has established requirements for specialcare units as an interpretation of the State’s licensingrequirements. These State regulations and require-ments are discussed later in this chapter.

Federal Medicare and Medicaid regulations re-quire that nursing homes have a State license (463).In effect, therefore, for a given State, the Federalregulations incorporate that State’s licensing regula-tions. In the case of States whose requirements aremore stringent or just different than the Federalrequirements in some other way, these different andmore stringent State requirements effectively be-come part of the Federal requirements.

State Certificate of Need Regulations

State certificate of need laws require explicit Stateapproval before a nursing home can be built or

expanded. As of 1988, 38 States had such laws(333). Certificate of need laws are intended to limitthe supply of nursing home beds in a State. It isgenerally believed that any additional nursing homebeds will eventually be filled with Medicaid-eligibleresidents and ultimately increase State expendituresfor nursing home care (318). By controlling the bedsupply, certificate of need laws are expected to limitthese expenditures.

The process of obtaining a certificate of need islengthy and complex in many States. Tables 6-2 and6-3 in chapter 6 list the steps involved in obtaininga certificate of need in Massachusetts and NewYork. As discussed later in this chapter, at least sixStates have altered the process for obtaining acertificate of need so that applicants who propose tocreate special care units receive special considera-tion.

Other State and Local GovernmentRegulations That Apply to Nursing Homes

Many State and local government regulationsapply to nursing homes as well as other buildings,businesses, and health care facilities. These regula-tions include fire safety codes, zoning codes, build-ing codes, and sanitation codes. Some of theseregulations are incorporated into the requirementsfor obtaining a State license or a certificate of need.

Chapter 5-Regulations And Guidelines For Special Care Units ● 139

Survey and Certification Procedures

Nursing homes are inspected regularly by individ-ual surveyors or teams of surveyors who monitor thefacilities’ compliance with each of the types ofregulations discussed thus far in this chapter. Al-though the regulations are clearly important inthemselves, their impact depends on how they areinterpreted and applied by the surveyors.

Inspection and certification of nursing homes isprimarily a State function (149,225). Each State hasat least one agency--often referred to as a surveyand certification agency—that performs inspectionsfor Medicare and Medicaid certification of nursinghomes. This agency usually also performs inspec-tions for State licensing purposes, but other Stateand local agencies are involved in these inspectionsas well. heal building inspectors, fire marshals, andsanitarians inspect nursing homes in connectionwith certification requirements, licensing require-ments, and other State and local government regula-tions that apply to nursing homes. The Departmentof Veterans Affairs (VA) also inspects all VA andnonVA nursing homes in which it places veterans(289).

The resources allocated by State and local govern-ments to nursing home inspections vary. A 1989survey of State agencies that perform inspections forMedicaid certification and/or State licensing foundthat 5 States had fewer than one surveyor for every10 nursing homes, whereas 5 States had 3 or moresurveyors for every 10 nursing homes (149).

OBRA-87 mandated changes in the survey andcertification procedures for Medicare and Medicaidcertification of nursing homes. Coupled with thenew requirements for Medicare and Medicaid certi-fication, the survey procedures mandated by OBRA-87 are intended to focus more on residents and theoutcomes of care than on written policies, staffcredentials, physical design features, and otherfactors that may affect a facility’s capacity toprovide care (309,462,456). The new survey proce-dures are also intended to allow survey agencies toconcentrate their attention on nursing homes thatprovide substandard care (456). OBRA-87 requiresthat each nursing home receive an unannounced“standard survey” annually. Facilities that arefound in the standard survey to provide substandardcare must receive an “extended survey” within 2weeks. The extended survey is intended to identify

the facility’s policies and procedures that resulted inthe substandard care.

OBRA-87 makes States responsible for the stand-ard and extended surveys (320,456). Annually, theFederal Government is required to conduct valida-tion surveys of at least 5 percent of the nursinghomes surveyed by each State in order to determinethe adequacy of the State survey. The FederalGovernment is also required to inspect State-ownednursing homes.

OBRA-87 requires that surveys for Medicare andMedicaid certification of nursing homes be con-ducted by a multidisciplinary team, including aregistered nurse (320). Members of the survey teammust meet minimum Federal qualifications, includ-ing completion of a federally approved training andtesting program. OBRA-87 also requires that Statesurvey and certification agencies employ sufficientstaff to investigate complaints and to monitorfacilities that do not meet the requirements or are indanger of falling out of compliance (320).

One purpose of the new survey procedures is toreduce the inconsistency of survey procedures indifferent States and localities (320). OBRA-87requires that the standard and extended surveys usea survey instrument developed, tested, and validatedby the Federal Government. The surveyor trainingrequirements mentioned above are also intended toreduce the inconsistency in survey procedures.

In September 1989, HCFA issued interpretiveguidelines to help surveyors apply the new require-ments for Medicare and Medicaid certification ofnursing homes (320). The guidelines were revisedfollowing the release in September 1991 of the finalrequirements for Medicare and Medicaid certifica-tion of nursing homes. In late 1991, HCFA sent therevised guidelines out for review. The guidelinesprescribe methods to be used in conducting inspec-tions, including procedures for interviewing resi-dents and reviewing resident assessments and careplans.

State Long-Term Care Ombudsman Programs

The Older Americans Act mandates that everyState have a Long-Term Care Ombudsman Programto investigate and resolve complaints of residents ofnursing homes and other residential care facilities.The State programs vary, but most States use bothpaid and volunteer staff and have offices at both the


State and local level. In 1990, State ombudsmanprograms had an average of one paid staff memberat the State or local level for every 3200 nursinghome beds; the range in different States was fromone paid staff member for every 789 beds to one paidstaff member for every 21,500 beds (321). Totalspending for State Long-Term Care OmbudsmanPrograms averaged $11.15 per nursing home bed peryear and ranged from $2.09 to $68.05 per bed peryear in different States.

Ombudsmen have the authority to enter a nursinghome at any time to investigate a complaint oradvocate for an individual resident (320). They canalso visit nursing homes to become acquainted withthe residents, monitor their care generally, andinform them of their rights. A 1990 survey oflong-term care ombudsmen found that only 16percent reported visiting the nursing homes in theirjurisdiction more than once a month for any of thesepurposes (321).

OBRA-87 created a new role for State Long-TermCare Ombudsman Programs in connection with thesurvey process for Medicare and Medicaid certifica-tion of nursing homes. The law requires the surveyand certification agency to contact the Long-TermCare Ombudsman Program to inquire about com-plaints the ombudsman program may have receivedabout a facility that is being surveyed (320). Thesurvey and certification agency is required to invitethe ombudsman to attend the exit conference at theend of a facility’s survey when the survey findingsare discussed. Lastly, the survey and certificationagency is required to inform the ombudsman if thefacility is not in compliance with any of thecertification requirements.

Summary and Implications

The existing regulatory structure for nursinghomes is extremely complex, and many aspects ofthe structure are in flux now because of OBRA-mandated changes in the Federal regulations forMedicare and Medicaid certification of nursinghomes and the survey and certification proceduresassociated with those regulations. The OBRA-mandated changes are likely to improve the carereceived by nursing home residents with dementia.The resident assessment system developed to imple-ment OBRA-87 focuses much more than assessmentinstruments used previously in nursing homes on theresidents’ cognitive status. The assessment system

emphasizes the care needs that are common amongnursing home residents with dementia, and OBRAregulations require that services be provided to meetthose needs.

Two factors could limit the benefits of OBRA-related changes for individuals with dementia. Oneobvious factor is a failure to implement the changes.Such a failure could occur as the result of a lack ofleadership and political will at the Federal, State, orlocal level. It could also occur as a result ofinsufficient government funding to implement thechanges, including insufficient Medicare and Medic-aid reimbursement for nursing home care, insuffi-cient funding for nurse aide training, and insufficientfunding for survey and certification staff and sur-veyor training. Some of this funding comes from theFederal Government, but some comes from States,so finding problems that affect implementation ofOBRA are likely to vary from State to State.

The second factor that could limit the benefits ofOBRA-related changes for individuals with demen-tia is lack of knowledge among nursing homeadministrators and staff members and nursing homesurveyors about the implications of the new require-ments for residents with dementia. With respect tothe OBRA-87 requirements cited earlier in thischapter, these individuals might ask, for example:what constitutes good quality of life for a residentwith dementia; what constitutes unavoidable dimi-nution in the resident’s ability to perform activitiesof daily living; what activities meet the interests andneeds of nursing home residents with dementia;what rehabilitative services are needed by nursinghome residents with dementia; what is a safe,home-like environment, and what are comfortablelevels of sound, lighting, and temperature? Research-based answers to these and other similar questionsdo not exist at present, and certain of the questionsare not amenable to research. There is also disagree-ment among clinicians about the answers. Yetanswers are needed for effective implementation ofthe new requirements.

STATE REGULATIONS AND OTHERSTATE POLICIES FOR SPECIAL

CARE UNITSAs of early 1992, six States had special regula-

tions for special care units. At least five additionalStates were developing regulations, and other Stateswere considering doing so. One State had guidelines

Chapter 5--Regulations And Guidelines For Special Care Units ● 141

for special care units instead of regulations, and oneother State was in the process of developingguidelines. Other policies for special care units thathave been implemented by a few States includealtering the process for obtaining a certificate ofneed so that applicants who propose to establishspecial care units receive special consideration,funding individual special care units, and fundingresearch on special care units. This section discussesthese State regulations and policies.

Some of the State regulations and policies forspecial care units have been mandated by Statelegislatures, and others have been put in place byexecutive decision. The initiative for the regulationsand other policies has usually come from Stateofficials and/or State Alzheimer’s disease taskforces, but these individuals and groups were oftenresponding to concerns raised originally by familymembers, special care unit operators, and nursinghome surveyors.

The regulations and policies differ in their pri-mary intent. Some are intended primarily to assurethat special care units are not established andoperated solely for marketing purposes and do, infact, provide something special for their residents.Other regulations and policies are primarily in-tended to protect the rights of special care unitresidents, particularly those in locked units. Stillother regulations and policies are intended to pro-mote the establishment or evaluation of special careunits.

Some industry representatives believe that Statesestablish regulations for special care units in part toraise State revenues (337). States generally chargenursing homes fees in connection with new con-struction or extensive remodeling. Consequently,special care unit regulations that include physicaldesign requirements are likely to generate fee-basedincome for the State.

Six States’ Regulations for Special Care Units

Six States—Iowa, Texas, Colorado, Washington,Tennessee, and Kansas, have special regulations forspecial care units. Iowa created a new licensingcategory for special care units, and Texas created avoluntary certification program. Colorado, Wash-ington, and Tennessee added requirements for spe-cial care units to their general licensing requirementsfor all nursing homes, and Kansas added an interpre-

tation on special care units to its licensing require-ments for all nursing homes.

The regulations developed by these six States arepresented in some detail in this section. OTA’sintent in presenting these regulations in detail is tocall attention to their diversity and some of theparticular features they require.

Iowa’s Regulations for Special Care Units

Iowa is the only State that currently requiresspecial care units to have a special license in additionto the license all nursing homes must have. Therequirements for the special license were developedin 1988 by a task force appointed by the IowaDepartment of Inspections and Appeals. The depart-ment’s intent in creating a special license was toassure that special care units provide appropriatecare for their residents and are not established onlyfor marketing purposes (334). When first imple-mented in November 1988, the special license wasvoluntary in the sense that nursing homes had toobtain a license for a special care unit only if theywere going to advertise they had such a unit. In thefirst year, one nursing home applied for a speciallicense.

At the urging of the State’s Task Force onAlzheimer’s Disease and Related Disorders, thelicensing requirements were made mandatory, effec-tive in July 1990. Now, nursing homes must have aspecial license if they are caring for individuals withdementia in a distinct part of the facility, with aseparate staff, and if they care only for individualswith dementia in that part of the facility (334). Thelicense, which was frost referred to as a license for‘‘special units for people with Alzheimer’s diseaseor related disorders, “ is now referred to as a licensefor ‘‘chronic confusion or dementing illness units orfacilities.’ This change is intended to precludefacilities from arguing that they do not have to obtaina special license because their residents do not havea diagnosis of Alzheimer’s disease. As of July 1991,17 nursing homes had obtained a special license, and2 more facilities had applied but not yet beenapproved for a license.

To obtain a special license, therequire a unit to have:

. a statement of philosophy,stated in terms of outcomes,

Iowa regulations

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admission and discharge policies, including apolicy requiring a physician’s approval for aresident’s admission to the unit,an interdisciplinary care planning team,safety policies that specify a method of lockingor otherwise securing the unit and steps to betaken if a resident is missing from the unit,policies that explain the programs and servicesoffered in the unit,policies that describe the numbers, types, andqualifications of the unit staff,policies that assure residents’ right to havevisitors,quality assurance policies,preadmission assessment of residents,staff training, including at least 6 hours oftraining for all new staff on nine topics listed inthe regulations and 6 hours of inservice trainingannually for all staff,2 hours of nursing staff time per resident perday, and a staff member on the unit at all times(Iowa Administrative Code, Sections 10A.104(5)and 135c.14).

In October 1990, several physical design specifi-cations were added to the Iowa regulations. Theyrequire a special care unit to have:

. a design such that residents, staff, and visitorsdo not pass through the unit to reach other partsof the facility,

. a locking system that meets the Life SafetyCode and is approved by the fire marshal or analternate system for securing the unit,

. a secure outdoor area with nontoxic plants,

. no steps or slopes,

. a separate dining area used only for unitresidents,

. a private area for nurses to prepare residentrecords,

. a unisex toilet room that is visible from thelounge and activity area, and

. a design that minimizes breakable objects(Iowa Administrative Code, Section 61.13).

Iowa is enforcing the licensing regulations, andseveral nursing homes have closed their special careunit because the unit did not meet the licensingrequirements (169). When officials of the IowaDepartment of Inspections and Appeals becomeaware of a unit that is not licensed, they do notcharge the facility with a violation of the regulations,but they do visit the unit to determine whether it is

a special care unit within the regulatory definition,and if it is, they notify the facility that a speciallicense is required (334).

The administrator of one nursing home in Iowathat has had a special care unit for 5 years told OTAthat although the unit is providing good care for itsresidents, it does not meet the licensing require-ments (452). She believes some of the State’srequirements, particularly the physical design speci-fications added in 1990, are overly rigid and requirefeatures that are not necessary for good care ofresidents with dementia.

Texas’ Regulations for Special Care Units

Texas has a voluntary certification program forspecial care units that was mandated by the Statelegislature in 1987 and became effective in February1988. Like the early phase of Iowa’s licensingprogram, nursing homes in Texas only have toobtain a license for a special care unit if they aregoing to advertise that they have such a unit. Thecreation of the voluntary certification program wasintended to encourage the establishment of specialcare units. As of September 1991, however, only 8special care units had been certified, even though theDepartment of Health is aware of at least 60 nursinghomes in the State that have a special care unit (1 12).

To be certified, the Texas regulations require aunit

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safety measures to prevent residents fromharming themselves or leaving the unit withoutsupervision,policies to prevent residents from abusing theproperty and rights of other residents,staff training, including at least 8 hours oftraining for all new staff on five topics listed inthe regulations and 4 hours of inservice trainingannually for all staff,specified staff-to-resident ratios for each shift,staff who are assigned exclusively to the unit,a social worker to assess the residents onadmission, conduct family support group meet-ings, and identify and arrange for the use ofcommunity resources,a specified amount of space per resident inpublic areas, including the dining area,a specified number of showers, bathtubs, toi-lets, and lavatories per resident,a nurses’ station with a place to write, a chair,‘‘task illurination, ’ a telephone or intercom to

Chapter 5--Regulations And Guidelines For Special Care Units . 143

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the main staff station, and a place to storeresident records,activity and recreational programs tailored tothe individual resident’s needs,resident access to a secure outdoor area with notoxic plants,admission practices that limit admission toindividuals with a diagnosis of Alzheimer’sdisease or a related dementing disorder whoseattending physician has documented the rea-sons for the individual’s admission to the unit,patient care practices that provide for residents’privacy during treatment and personal care,patient care practices that provide for careful,time-limited use of restraints and psychotropicmedications,at least two exits,latches or other fastening devices for the exitdoors that are easy to release, even in the dark,andif the exit doors are locked, the facility musthave a complete sprinkler system or fire alarmsystem; the locks must release automatically ifthe sprinkler or alarm system is activated or ifthere is a power failure; and there may be akeypad or buttons at the door for routine use bythe staff (Texas Department of Health, Chapter145, Subchapter B, 145.301-145.304).

At public hearings in October 1989, witnessesmade both positive and negative comments aboutTexas’ voluntary certification program (443). Thepositive comments focused on the importance of thetraining requirements and the value of the certifica-tion program in providing initial guidelines forfacilities and preventing facilities from advertisinga special care unit that does not meet minimumstandards. The negative comments focused on thedifficulty of setting standards in a changing field andthe need for revisions to the standards that wouldrequire higher staff levels during some periods of theday, documentation of staff training, and programsand policies to address the needs of family members.Officials of two companies that have several nursinghomes with special care units in Texas told OTA thatthe companies consider the State’s requirements forvoluntary certification difficult to meet and costly;that some of the companies’ facilities are certifiedand others are not; and that the companies do notbelieve their certified facilities are providing bettercare than their uncertified facilities (3,141).

Colorado’s Regulations for Special Care Units

Colorado has special requirements for “secureunits’ which apply to locked special care units aswell as any other locked nursing home units. Therequirements were developed in 1985-1986 by theColorado Department of Health. Their primaryintent is to protect individuals who are placed inlocked units (409). The requirements are incorpo-rated in the State’s regulations for all nursing homes,and no special license or certification is required forthe units.

The Colorado regulations require a‘ ‘secure unit’to have:

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an admissions evaluation team with specifiedmembers, including a person with mentalhealth or social work training who is not amember of the nursing home staff,admission practices to ensure that individualsare not placed on the unit unless the evaluationteam finds that: 1) they are dangerous tothemselves or others, or 2) they habituallywander and would not be able to find their wayback, or 3) they have significant behavioralproblems that seriously disrupt the rights ofother residents, and 4) less restrictive alterna-tives have been unsuccessful in preventingharm to themselves or others, and 5) legalauthority for the restrictive placement has beenestablished,admission practices to ensure that individualsare not placed on the unit for punishment or theconvenience of staff and that the unit is the leastrestrictive alternative available,admission practices to ensure that those placedon the unit because they are dangerous tothemselves or wander habitually are protectedfrom residents who are dangerous to others orwhose behavior disrupts the rights of others,documentation of the reasons for residents’admission to the unit and a physician’s ap-proval of the admission,written programs to treat the residents it admits,practices to allow visitors,sufficient staff to provide for the needs of theresidents,staff whoneeds andunit,additionalmeet the

are experienced and trained in thecare of the types of residents in the

social work and activities staff tosocial, emotional, and recreational


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needs of residents and the social and emotionalneeds of residents’ families in coping with theresidents’ illness,social services and activities that allow regularinteraction with non-confused residents of thefacility and the outside community,a provision that residents may not be lockedinto or out of their rooms,a specified amount of space per resident inpublic areas,a secure outdoor area, if the facility has anoutdoor area for residents of other units,practices that meet the fire safety standards ofthe 1985 Life Safety Code, andperiodic reevaluation of the residents’ place-ment (Colorado regulations for Long-TermCare Facilities, sections 19.1-19.9).

Colorado regulations specify that residents withAlzheimer’s disease whose condition has stabilizedmay remain on the unit if the evaluation teamconcludes the “placement is necessary to avoid alikely recurrence of the condition that was thepurpose of the initial placement on the unit”(Colorado Regulations for Long-Term Care Facili-ties, section 19.5.3).

Washington’s Regulations for Special Care Units

Washington State has special requirements for“protective units for cognitively impaired resi-dents.’ One set of requirements was implemented in1986 as an interpretation of the State’s licensingrequirements for all nursing homes (500). In 1989,the interpretation was replaced by a new set ofrequirements that are incorporated in the State’sregulations for all nursing homes. No special licenseis required for the units.

As of late 1991, Washington State was reviewingall its nursing home regulations, including therequirements for “protective units for cognitivelyimpaired residents’ (179). Changes in the require-ments are a possibility.

The Washington State regulations require a ‘‘pro-tective unit for cognitively impaired residents” tohave:

a dining area that may also serve as a day roomfor the unit,a secure outdoor area with 1) walls or fences ofa specified height, 2) an ambulation area withfirm stable surfaces that are slip-resistant, 3)exits that release automatically if the fire alarm

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is activated, 4) outdoor furniture, and 5) non-toxic plants,a staff toilet room,corridors no less than 10 feet wide in newconstruction and 8 feet wide in renovated units,floors, walls, and ceiling surfaces of contrastingcolors; the surfaces may conceal areas theresidents should not enter,door thresholds that are one-half inch high orless,an electrical signaling system in each room forstaff use in an emergency,no keyed locks on the exit doors or any doorbetween a resident and the exit; exits may besecured by alarms or doors which requirecognitive ability to open or by other methodsthat open automatically if the fire alarm isactivated; the releasing devices for the doorsmust be labeled with directions, accessible byresidents, and approved for use by the State firemarshal, andno use of a public address system except foremergencies (Washington Administrative Code248-14-211).

Tennessee’s Regulations for Special Care Units

Tennessee has special requirements for “specialcare units for ambulatory patients with Alzheimer’sdisease and related disorders.’ The regulations weredeveloped on the initiative of the Governor’s TaskForce on Alzheimer’s Disease and went into effectin March 1991. Nursing homes with a special careunit must apply to the State’s Board for LicensingHealth Care Facilities to have the unit ‘designated”as a special care unit. To avoid delays in openingnew special care units, nursing homes that are incompliance with the State’s general nursing homerequirements may open a special care unit withoutwaiting for the Board to designate the unit (36).Eventually, however, all special care units must bedesignated by the board.

As of June 1992, 12 special care units had beendesignated by the board, and one additional nursinghome had applied for designation of its special careunit (36). Thus far, no nursing home that has appliedfor designation for a special care unit has been turneddown.

The Tennessee regulations require a‘ ‘special careunit for ambulatory patients with Alzheimer’s dis-ease and related disorders’ to have:


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admission practices such that each resident hasa diagnosis made by a physician that identifiesthe specific cause of the resident’s dementiaand each resident’s need for admission to theunit is determined by an interdisciplinary teamthat includes a physician who is experienced inmanaging individuals with dementia, a socialworker, a nurse, and a relative or other advocatefor the resident,access to a protected outdoor area,separate dining/activity areas,a stated bed capacity that is not exceeded at anytime,a design such that visitors and staff do not passthrough the unit to reach other parts of thenursing home,3.5 hours of direct care per resident per day,including ,75 hours of direct care provided bya licensed nurse,resident care plans that are developed, periodi-cally reviewed, and implemented by an inter-disciplinary team that includes a physician whois experienced in managing individuals withdementia, a social worker, a nurse, and arelative or other advocate for the resident,a 40-hour classroom training program for nurseaides that is in addition to the 40-hour basictraining program for all nurse aides and coversthe causes, progression, and management ofdementia, including methods of responding toresidents’ behavioral symptoms, alleviatingsafety risks, assisting residents with activitiesof daily living, and communicating with resi-dents’ families.procedures for identifying and alleviating job-related staff stress,a family support group that meets at leastquarterly, provides family education and sup-port, and allows for family input into theoperation of the unit, andif the unit is locked, ‘extraordinary and accept-able fire safety features and polices’ to protectthe residents (Tennessee State Rule 1200-8-6-.10)

The original intent of the Governor’s Task Forcein initiating the special care unit regulations was thatMedicaid reimbursement would be increased forspecial care units that met the specified require-ments, but this objective has not been realized. Likeall other States, Tennessee provides no higherreimbursement for Medicaid-eligible individuals in

special care units than in any other nursing homeunit. In the first year after the regulations went intoeffect, the Board for Licensing Health Care Facili-ties received many inquiries about the designation ofspecial care units but relatively few applications.The board’s director believes this is because thecurrent level of reimbursement for Medicaid-eligible individuals does not cover the additionalcost a nursing home would incur to comply with thespecial care unit requirements.

Kansas’ Regulations for Special Care Units

Kansas has requirements for special care units thatwere issued in 1989 as an interpretation of theState’s licensing regulations for all nursing homes.As of September 1991, the Kansas Adult Care HomeProgram was in the process of revising the licensingregulations and had proposed that the interpretationon special care units be included as a requirement inthe revised regulations (267).

The Kansas interpretation requires a special careunit

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admission criteria, including a requirement thatthe resident have a medical diagnosis and aphysician’s order to be admitted,a staff training program and documentation thatstaff members have completed the program,a staff member on the unit at all times;a nurses’ sub-station located so that the corri-dors are visible from the sub-station,nurse-call signals that are visible and audiblefrom the corridors and nurses’ sub-station,living, dining, activity, and recreational areasthat are accessible to the residents,resident care plans that identify the problemsthat justify the resident’s placement on the unitand identify interventions that could correct orcompensate for those problems,methods of securing the unit that are the leastrestrictive possible- and comply with all lifesafety codes (Kansas Administrative Rules,28-39-78 (a) (6) and (7) and 28-39-87 (c) and(e)).

Kansas is enforcing these requirements. At thebeginning of a nursing home inspection, the sur-veyor asks whether the facility has a special care unitand then evaluates the identified unit, if any, on thebasis of the requirements of the interpretation inaddition to the general requirements for all nursinghomes (267). No information is available about the

146 . Special Care Units for People With Alzheimer's and Other Dementias

number of special care units identified in this way bythe surveyors. The director of the State’s Adult CareHome Program told OTA that special care units aremost likely to have trouble with three of therequirements: 1) the admission criteria, 2) the stafftraining, and 3) the resident care plan (267).

States That Are Developing or ConsideringDeveloping Regulations for Special Care Units

State legislatures in four States have mandated thedevelopment of special regulations for special careunits. Two State health departments are developingregulations for special care units without a priorlegislative mandate, and one State health departmentis considering doing so. State Alzheimer’s diseasetask forces and other legislatively appointed bodiesin several States have recommended the develop-ment of regulations for special care units, and in oneState, the legislature has mandated the appointmentof a committee to determine whether regulations areneeded.

In 1989, the Arkansas legislature passed a billrequiring the Department of Human Services toestablish a mandatory certification program forspecial care units. In 1990, after considering theissue of regulations for special care units and withthe approval of the bill’s legislative sponsor, thedepartment decided not to go ahead with thecertification program (147). As of early 1992,however, the State was reconsidering this issue. Onepossibility being considered was the creation of anew licensing category for special care units.

In 1989, the Nebraska legislature passed a resolu-tion mandating a study of special care unit standardsthat would result in recommendations for legislationto regulate the units (323). In response, the Gover-nor’s Alzheimer’s Disease Task Force formed asubcommittee to examine this issue and makerecommendations. The subcommittee’s report, re-leased in November 1989, specifies principles,goals, and objectives for special care units, a list ofrecommended policies and procedures that are verysimilar to Iowa’s requirements for a special care unitlicense, and a proposed training program for specialcare unit staff members. The subcommittee recom-mended that the Nebraska Department of Healthdevelop regulations based on the content of thisreport and the Iowa licensing requirements, Thesubcommittee concluded that required staffing ra-tios for special care units should be based on ‘acuity

ratings of the patients” and that Medicaid reim-bursement for residents of special care units shouldalso be based on “acuity ratings” and on the cost tothe nursing home of complying with the Staterequirements for special care units, once developed(323). As of September 1991, the Department ofHealth was still working on draft regulations (447).

In 1991, the Oregon legislature passed a billrequiring nursing homes and residential care facili-ties that have a special care unit to register with aState agency, the Senior and Disabled ServicesDivision, by Oct. 1, 1991 (335). Twenty-fourfacilities registered by that date, including 20nursing homes and 4 residential care facilities (126).The Oregon legislation also requires that by June 1,1993, facilities with a special care unit must have aspecial ‘‘endorsement’ on their general license. Toobtain the endorsement, the special care units willhave to meet requirements in three areas: “1) careplanning, including physical design, staffing, stafftraining, safety, egress control, individual careplanning, admission policy, family involvement,therapeutic activities, and social services; 2) conti-nuity of basic care requirements; and 3) marketingand advertising of the availability of and servicesfrom Alzheimer’s care units” (335). As of early1992, the Senior and Disabled Services Division wasdeveloping the requirements for the endorsement.An advisory committee that includes three Alz-heimer’s advocates, three industry representatives,and one official of an area agency on aging had beenappointed to assist the division in developing therequirements(126).

In 1991, the North Carolina legislature passed abill requiring the State Medical Care Commission todevelop standards for special care units in nursinghomes and requiring the State Social ServicesCommission to develop standards for special careunits in residential care facilities. Both sets ofstandards are to address “the type of care providedin a special care unit, the type of resident who can beserved on the unit, the ratio of residents to staffmembers, and the requirements for the training ofstaff members’ (33 1). As of early 1992, both sets ofstandards had been drafted and were in the approvalprocess (71). As a part of that process, the Statelegislature asked for a cost impact statement todetermine the cost implications of the standards.

The New Jersey Department of Health is develop-ing regulations for special care units (161). The

Chapter 5--Regulations And Guidelines For Special Care Units ● 147

regulations will require special care units to meet 65percent of the requirements if they are going toadvertise as a special care unit.

The Oklahoma Department of Health is alsodeveloping regulations for special care units, pri-marily in response to recommendations of the StateTask Force on Alzheimer’s Disease and RelatedDisorders (326). The regulations will require specialcare units to have a special license in addition to thelicense all nursing homes must have.

The New Mexico Department of Health is consid-ering the development of regulations for special careunits (499). The department intends to work with theAlzheimer’s Association and the School of Nursingat the University of New Mexico on this project.

In the past few years, State Alzheimer’s diseasetask forces in at least two additional States—Arizona, and Indiana-have recommended the de-velopment of regulations for special care units(14,65,203). In its 1989 report, the Arizona AdvisoryCommittee on Alzheimer’s Disease and RelatedDisorders cited complaints from many familiesabout ‘difficult and stressful encounters with poorlyrun homes’ and about the lack of standards andregulatory guidance in the selection of residentialcare homes (14). The committee recommended thatthe Arizona Department of Health Services beauthorized “to develop guidelines, set standards,and regulate specific Alzheimer’s patient care unitsin nursing homes that are presented to the public asproviding specialized care” (14). Following therelease of its 1989 report, the committee developeddraft standards. As of early 1992, the State had notyet agreed to enforce the standards, and the commit-tee was seeking ways to obtain voluntary compli-ance (432).

In Indiana, the State’s Family and Social ServicesAdministration contracted with the Alzheimer’sAssociation of Greater Indianapolis to developstandards for special care units and to make arecommendation about whether the State shouldinstitute either a voluntary or a mandatory certifica-tion program for special care units (428). Thecontract ran from January 1992 to June 1992.Although the standards proposed by the Alzheimer’sAssociation may eventually be the basis for regula-tion, the State has not yet committed itself toestablishing regulations.

In California, some members of the State’sAlzheimer’s Advisory Committee drafted guide-lines for special care units but concluded that itwould take several years to get the guidelinesincorporated into the State’s nursing home regula-tions with or without legislation (484). As a result,the committee is working with California’s nursinghome associations and individual nursing homeoperators toward eventual voluntary implementa-tion of the guidelines. As of July 1992 the draftguidelines were being reviewed by the associations,consumers, policymakers, and others (255).

In Rhode Island, in early 1992, the Long-TermCare Coordinating Committee, a legislatively ap-pointed body, approved draft legislation to createstandards for special care units (284). The draftlegislation has been sent to the State legislature.

Lastly, in Virginia, in March 1992, the Statelegislature passed a resolution requiring the estab-lishment of a committee to determine whether theState should have regulations for special care units.The Virginia Department of Mental Health hasappointed the committee.

States That Have Developed or AreDeveloping Guidelines for Special Care

Units or for the Care of People WithDementia in All Nursing Homes

New Hampshire has guidelines for special careunits, and Missouri is developing such guidelines.The New Hampshire guidelines are published in an8-page booklet that has one section for families whoare trying to evaluate special care units and anothersection for nursing home operators who are inter-ested in establishing a special care unit (325). Byproviding information for families and nursing homeoperators in the same publication, the New Hamp-shire booklet directs the attention of the nursinghome operators to what families are likely to belooking for in a special care unit.

The New Hampshire State agency that producedthe booklet chose to publish guidelines rather thanregulations because of an awareness of the diversityof opinions about special care units both inside andoutside the State government (216). The agency hasnot ruled out the possibility of developing regula-tions in the future.

In 1990, the Missouri Division of Aging ap-pointed a special care unit committee to develop


guidelines (153). One reason Missouri chose todevelop guidelines rather than regulations was abelief in the State that nursing homes would expectregulations to be accompanied by increased reim-bursement for special care units and that thedevelopment of guidelines would not create thatexpectation.

Massachusetts took a different approach thanother States in its ‘‘Guidelines for Care of PatientsWith Alzheimer’s Disease and Related Disorders inMassachusetts Long-Term Care Facilities. ” Theseguidelines, published in 1988, pertain to the care ofindividuals with dementia in any nursing home unit(288). As of late 1991, anew set of guidelines for thecare of individuals with dementia in nonspecializednursing home units was being reviewed (362). At thesame time, the Eastern Massachusetts Chapter of theAlzheimer’s Association, in cooperation with theMassachusetts Department of Health, was drafting aseparate set of guidelines for the care of individualswith dementia in special care units.

In its 1991 report, the Maryland CoordinatingCouncil on Alzheimer’s Disease and Related Disor-ders recommended an approach similar to the 1988Massachusetts guidelines (286). The Council rec-ommended that the State work with industry andadvocacy groups to develop guidelines that wouldapply to the care of individuals with dementia in anynursing home unit. The Council also recommendedthat the State collect information about special careunits. It recommended against the development ofregulations, saying, “States and advocacy groupswhich have attempted to develop regulations ordetailed guidelines for special care units have notbeen particularly successful” (286).

States That Have Certificate of NeedExceptions for Special Care Units

As noted earlier, certificate of need laws areintended to limit the supply of nursing home beds ina State. At least six States--Georgia, Kentucky,Michigan, Mississippi, New Jersey, and Ohio-have altered the process for obtaining a certificate ofneed, either on an ongoing or a one-time basis, sothat applicants who propose to create special careunits or special nursing homes for people withdementia receive special consideration. To OTA’sknowledge, only two of these States, Kentucky andMichigan, have special requirements for the units orfacilities developed with a certificate of need excep-

tion (35,155,161,172). This lack of requirementscreated consternation in at least one of the otherStates when State surveyors were preparing for theirannual inspection of a facility that had created aspecial care unit with a certificate of need exception,and the surveyors wanted to know what to look forwhen they inspected the unit (155).

In Kentucky, the legislature created a time-limitedexception to the State’s certificate of need law toallow the establishment of “free-standing facilitieslimited to the care of patients with Alzheimer’s orrelated disorders’ (172). The facilities had to beapproved by July 1991 and have to meet speciallicensing requirements. Interestingly, the licensingrequirements for free-standing Alzheimer’s facili-ties do not apply to special care units, and free-standing Alzheimer’s facilities do not have to meetthe State’s regulatory requirements for all nursinghomes. As of the cutoff time in July 1991, onefacility had obtained a license, and another facilitywas in the process of doing so (343).

Effective in 1989, the Michigan Certificate ofNeed Commission set aside 200 beds from the totalnumber of allowable new nursing home beds in theState to be used for special care units. The Commis-sion determined that special care units createdthrough this certificate of need exception must:

admit only patients who require long-term careand have been appropriately classified as hav-ing a score below a given level on the GlobalDeterioration Scale, a widely used assessmentinstrument,participate in the State Alzheimer’s registry,operate for a minimum of 5 years and conductand participate in research programs approvedby the department to evaluate the effectivenessof special care units and to study the relation-ship between the needs of Alzheimer’s patientsand the needs of other nursing home residents,be affiliated with a research facility or program,be attached or geographically adjacent to alicensed nursing home,have no more than 20 beds,have direct access to a secure indoor or outdoorarea for unsupervised activity,have a separate dining room for use only byresidents of the unit,have a physical environment designed to mini-mize noise and light reflections, andhave trained staff (304).


As of March 1991, the first five applicants forcertificate of need exceptions had been disapprovedbecause they did not submit a research protocol orwere not affiliated with a research program (514).

Other State Policies for Special Care Units

In addition to regulations, guidelines, and certifi-cate of need exceptions, several States have pro-vided finding for individual special care units or fortraining staff members in special care units. In 1987,Massachusetts initiated its “Alzheimer’s Unit PilotProgram” which has provided funding for eightnursing homes to create special care units. Connec-ticut has provided funding for a 120-bed nursinghome and research center devoted to the care ofindividuals with Alzheimer’s disease. Florida hasprovided funding for a long-term care facility andresearch center for individuals with Alzheimer’sdisease. Each of these projects is intended todevelop, demonstrate, and evaluate methods ofspecialized dementia care.1

California has funded at least two studies ofspecial care units. One study compared two nursinghome special care units, two nonspecialized nursinghome units, and two specialized programs forindividuals with dementia in board and care facili-ties (256). The results of this study are discussed inchapter 3. A second study is comparing variousmethods of preventing individuals with dementiafrom wandering away from a care setting. The studyis evaluating the effectiveness of door alarms andwrist bands vs. a locked perimeter in achieving thispurpose (484).

Beginning in 1991, Michigan has provided fund-ing to the Alzheimer’s Care and Training Center, aspecial care unit in Ann Arbor, Michigan, to supportresearch on the care of individuals with dementiaand to provide training about dementia for staff ofthe State’s community mental health centers (384).Rhode Island has provided funding for the past sixyears for a training program that has been instrumen-tal in establishing several special care units andspecialized adult day centers (284).


Special care units are clearly an area of policyinterest in many States. As discussed in the preced-ing sections, there are now:

six States with regulations for special care units(IA,TX,CO,WA,TN,KS);five States in the process of developing regula-tions (NC,NE,NJ,OK,OR);one additional State that has passed legislationto mandate the development of regulations(AR);three additional States in which the State-appointed Alzheimer’s task force or long-termcare advisory council has recommended thedevelopment of regulations (AZ,IN,RI);one State that has passed legislation to establisha committee to study the need for regulations(VA);one State with guidelines for special care units(NH);one State that is developing guidelines forspecial care units (MO);one State with guidelines for the care ofindividuals with dementia in any nursing homeunit (MA);one State in which the Alzheimer’s task forcehas recommended the development of guide-lines for the care of individuals with dementiathat would apply to any nursing home unit(MD);six States that have altered the process forobtaining a certificate of need to encourage theestablishment of special care units(GA,KY,MI,MS,NJ,OH); andsix States that have provided funding forindividual special care-units, for training inspecial care units, or for research on specialcare units (MA,CA,CT,FL,MI,RI).

These figures and the discussion in the precedingsections reflect information available to OTA as ofearly 1992. The figures indicate that a total of 28States have, are in the process of developing, or areconsidering developing policies of some kind forspecial care units. (Five States are included twice inthe list.)

1 Several other States, e.g., Illinois and New York, have provided funding for nursing homes to develop improved methods of caring for residentswith dementia in nonspecialized units. The New York Medicaid program pays an additional $4 a day for residents with Alzheimer’s disease in any nursinghome (201). Maine and Oregon subsidize the care of some residents with dementia in specialized board and care facilities (303,501).


State policies for special care units are changingrapidly. Interest in the development of regulationsfor special care units is clearly growing. In someStates, this interest is unopposed. In other States,such as Illinois, Michigan, Ohio, and Wisconsin, thisissue is controversial, and some groups stronglyoppose the development of regulations. Anecdotalevidence suggests that in a few States, regulatoryproposals developed by Alzheimer’s advocates havebeen opposed by other Alzheimer’s advocates ornursing home industry representatives who havedifferent ideas about whether there should beregulations, and if so, what the regulations shouldsay.

Thus far, State policies for special care units havebeen developed without regard for the nursing homereform provisions of OBRA-87. Some of the Stateregulations for special care units were developedbefore OBRA-87 was passed, and many of theregulations were developed before the publication inFebruary 1989 of the first version of the require-ments to implement OBRA-87. It is surprising,however, that current discussion and debate aboutregulations and guidelines for special care units isproceeding with so little reference to the OBRArequirements. One exception to this observation isthe 1991 report of the Maryland CoordinatingCouncil on Alzheimer’s Disease and Related Disor-ders. The report notes the likelihood that OBRArequirements will improve the care of people withdementia in nursing homes and stresses the impor-tance for Alzheimer’s advocates of monitoringfacilities’ compliance with the requirements (286).

Regulations for special care units now in effect inIowa, Texas, Colorado, Washington, Tennessee, andKansas have both similarities and differences. EachState’s regulations address several common areas,e.g., admission criteria, security, staff training, andsome aspects of physical design, but their require-ments in each of these areas differ. Moreover, eachState’s regulations include requirements for featuresnot addressed in other States’ special regulations,e.g., Iowa’s requirement that the unit and its outdoorarea have no steps or slopes, Washington’s require-ment that floors, walls, and ceilings have surfaces ofcontrasting colors, and Colorado’s requirement thatresidents may not be locked into or out of theirrooms.

What is and is not included in these regulations issignificant because of the implication that features

required by the regulations are particularly impor-tant in the care of nursing home residents withdementia and that other features not addressed by theregulations are not particularly important for theseresidents. The inclusion of certain features suggeststhat nursing home resources should be expended forthose features and not others.

Many of the requirements for special care units inthe six States probably are not more important in thecare of nursing home residents with dementia thanother nursing home residents, e.g., an interdiscipli-nary care planning team (IA,TN); policies thatexplain the programs and services offered in the unit(IA); a social worker to assess residents on admis-sion, conduct family support group meetings, andidentify and arrange for the use of communityresources (TX); activity and recreational programstailored to individual residents’ needs (TX); a staffmember on the unit at all times (KS); and nurse-callsignals that are visible and audible from the corri-dors and the nurses’ sub-station (KS).

Some of the requirements in the six States’regulations duplicate provisions of OBRA-87 thatapply to all nursing home residents. For example,Iowa and Colorado require that special care unitshave policies to allow residents to have visitors. TheOBRA requirement states, “The resident has theright and the facility must provide immediate accessto any resident. . subject to the resident’s right todeny or withdraw consent at any time, by immediatefamily or other relatives of the residents. . and byothers who are visiting with the consent of theresident” (463).

In general, the six States’ requirements focusmore on staff training and physical design featuresand less on activity programs and programs toinvolve and support residents’ families. Althoughthere is no evidence from research that any one ofthese features is more likely than the others toproduce positive outcomes, some dementia expertswould probably favor a greater emphasis on activityprograms and family support programs than exists inthe six States’ requirements.

Notably absent from the requirements of five ofthe six States is any mention of the role ofphysicians, except in approving residents’ admissionto the unit. Likewise, except for the Coloradoregulations, mental health expertise and training arenot mentioned, and their inclusion in the Coloradoregulations may simply reflect the fact that these

Chapter 5--Regulations And Guidelines For Special Care Units . 151

regulations pertain to locked units for psychiatricpatients as well as locked units for individuals withdementia. Requirements for ongoing physicians’involvement with residents appear in other sectionsof the States’ nursing home regulations and in theFederal regulations for Medicare and Medi-caid certification of nursing homes, and there mayalso be requirements for involving individuals withmental health training in other sections of the Statesnursing home regulations. Omission of these fea-tures in the special care unit requirements suggests,nevertheless, that they are less important in the careof nursing home residents with dementia than thefeatures that are included.

The overall impact of State regulations on thegrowth of special care units is unclear. Anecdotalevidence suggests that some of the six States’regulatory requirements may discourage the growthof special care units, primarily because of the cost ofcomplying with the requirements. The HillhavenCorp. estimates that complying with WashingtonState’s requirements increased the remodeling costfor a special care unit that opened in one of theirfacilities in 1991, from $69,000 to $118,000 (261).As a result, the corporation canceled plans for aspecial care unit in another facility in the State.

In considering the impact of State regulations onthe growth of special care units, it is interesting tonote that despite the growing number of special careunits in the United States and the growing interest inregulations for special care units in many States, asof early 1992, there were fewer than 60 special careunits nationwide that were specially licensed, certi-fied, designated, or registered (17 to 19 units inIowa, 8 units in Texas, 12 units in Tennessee, and 20units in Oregon). OTA is not aware of any researchthat compares these licensed, certified, designated,or registered units to other special care units.

SPECIAL CARE UNITGUIDELINES DEVELOPED BYOTHER PUBLIC AND PRIVATE

ORGANIZATIONSIn addition to States, several other public and

private organizations have developed or are in theprocess of developing guidelines for special care

units. Six of these organizations-the Alzheimer’sAssociation, the American Association of Homesfor the Aging, the Massachusetts Alzheimer’s Dis-ease Research Center, the National Institute onAging’s Alzheimer’s Disease Education and Refer-ral Center, the University of South Florida’s Sun-coast Gerontology Center, and the University ofWisconsin-Milwaukee’s Center for Architecture andUrban Planning Research-have completed guide-line documents. The Alzheimer’s Association alsohas legislative principles for special care units. TheAlzheimer’s Society of Canada, the Alzheimer’sCoalition of Connecticut, and the U.S. Departmentof Veterans Affairs are developing guidelines forspecial care units. Some multi-facility nursing homecorporations have formal guidelines or standards fortheir special care units. Lastly, the Joint Commissionon Accreditation of Healthcare Organizations, aprivate organization that offers voluntary accredita-tion for nursing homes, is developing guidelines toassist its surveyors in evaluating special care units inthe nursing homes it accredits. This section brieflydescribes each of these guideline documents andefforts.

Some of the guidelines developed by theseorganizations are intended as a basis for governmentregulations, but most are not. None of the sixcompleted guideline documents is intended as abasis for regulations. It is OTA’s impression thatobtaining agreement among experts in dementia careabout the features that should be required in a specialcare unit is more difficult than some organizationsanticipate. As a result, organizations that begin withthe intention of developing standards that could beused for regulatory purposes sometimes concludelater on that there is insufficient agreement amongexperts to support such standards and decide todevelop guidelines instead.

The American Association of Homes for theAging— “Best Practices for Special CarePrograms for Persons With Alzheimer’s

Disease or a Related Disorder”

In 1988, the Task Force on Alzheimer’s Diseaseof the American Association of Homes for the Agingcompleted its ‘Best Practices’ document (10).2 Thedocument is intended to provide guidelines forexemplary special care programs and to help nursing

2 TO 0~*~ ~Owle@., me ~encm A~~OCiatiOn of H~mes for the Aging’s ‘ ‘Best ~wtiws” document~s not been published. It is available fromthe Association however.


home operators and others distinguish specializeddementia care from standard practice. The documentpoints out that, ‘‘although many of the best practicesappear at first to be the standards of any qualityprogram, when taken as a whole the best practicesdefine what is special about dementia care’ (10). Italso emphasizes that little research has been con-ducted on specialized dementia care, that the “BestPractices” guidelines are based on clinical experi-ence, and that with further experience and research,the guidelines will be validated, improved upon, andexpanded. The document is not intended to be usedfor regulatory purposes.

The 22-page “Best Practices” document ad-dresses seven areas: commitment, philosophy ofcare, therapeutic program, physical design, special-ized staff, communications program, and educationand research (10). For each of these areas, a generalstatement of the best practice is given; the character-istics or components of the best practice are listed;and the desirable outcomes in that area are de-scribed.

The Massachusetts Alzheimer’s DiseaseResearch Center— “Blueprint for a

Specialized Alzheimer’s Disease Nursing Home”

In 1989, with funding from the National Instituteon Aging and the Administration on Aging, theMassachusetts Alzheimer’s Disease Research Cen-ter held a 2-day workshop to develop a plan for aspecialized Alzheimer’s disease nursing home. Theworkshop participants tried to define what should bespecial about specialized care for individuals withdementia, what works for these patients, and whichpatients it works for. The resulting document,released in 1990, provides general conclusions andrecommendations but emphasizes the need forrigorous research on specialized dementia care(287). It is not intended to be used for regulatorypurposes.

The 20-page “Blueprint” document addressesthree areas: policy planning, patient care programs,and architectural design (287). For each of theseareas, a series of interrelated recommendations aremade based on the workshop discussion and laterreview and revisions by the workshop participants.

The Alzheimer’s Disease Education andReferral Center— “Standards for Care forDementia Patients in Special Care Units”

In 1991, the Alzheimer’s Disease Education andReferral Center completed its guidelines for specialcare units (6). The center, which is funded by theNational Institute on Aging, is a clearinghouse forinformation about Alzheimer’s disease for profes-sionals, patients, families, and the general public.The “Standards” document is available to anyonewho requests it. Despite its title, the document doesnot set standards. It discusses the pros and cons ofdeveloping standards for special care units, pointsout the lack of information about many aspects ofspecialized care for individuals with dementia, andemphasizes the need for research on the costs andeffectiveness of special care units. The document isnot intended to be used for regulatory purposes.

The ‘Standards’ document addresses seven areas:admission, environment, activities, staffing, train-ing, expected impacts, and research issues (6). Foreach of these areas, a brief summary of currentthinking is given.

The University of South Florida’s SuncoastGerontology Center— “Draft Guidelines forDementia Specific Care Units (DSCUs) for

Memory Impaired Older Adults”

In 1991, researchers from the Suncoast Gerontol-ogy Center published the findings of a study of 13special care units in west central Florida (64). Asdiscussed in chapter 3, the researchers used the studyfindings to create a typology of ‘‘minimally specific,moderately specific, and highly specific” units. Onthe basis of the study findings and the typology, theresearchers developed guidelines for special careunits (63). The guidelines are not intended to be usedfor regulatory purposes.

The 19-page “Draft Guidelines” document ad-dresses ten areas: goals and philosophy, targetpopulation, admission and discharge criteria, resi-dent assessment, physical environment, activityprograms, unit size and staffing, staff training,family involvement, and ongoing evaluation (63).For each of these areas, a theoretical rationale andseveral specific guidelines are given.


The University of Wisconsin-MilwaukeeCenter for Architecture and Urban PlanningResearch— “Environments for People With

Dementia: Design Guide”

In 1987, the American Institute of Architects andthe Association of Collegiate Schools of Architec-ture contracted with the Center for Architecture andUrban Planning Research at the University ofWisconsin-Milwaukee for a project to developenvironmental design guidelines for special careunits and other specialized settings for people withdementia. The project resulted in an annotatedbibliography (363), a book of facility case studies(96), a regulatory analysis (94), and a design guide(95). The 97-page design guide discusses particularneeds of persons with dementia, related therapeuticgoals for the physical environment, and designprinciples for achieving those goals. It includesfacility case examples and illustrations.

The Alzheimer’s Association-LegislativePrinciples and “Guidelines for Dignity”

In 1988, the Alzheimer’s Association published a13-page booklet to help families of individuals withdementia evaluate special care units (276). Thebooklet provides information about specialized de-mentia care and advises family members to visit aunit and to observe certain aspects of the physicalenvironment, unit staffing, and resident care beforedeciding to place their relative with dementia in theunit.

As the number of special care units has increased,the association’s national office and many of itsmore than 200 chapters nationwide have received anincreasing number of requests from family membersand others for information and advice about specialcare units. Nursing home operators contact Alz-heimer’s Association chapters for help in establish-ing a special care unit, and some chapters areproviding formal or informal consultations to suchfacilities (114,231). State officials also contact thenational office and the chapters for assistance indeveloping State relations for special care units.For these reasons, and because of concerns aboutspecial care units that are apparently establishedonly for marketing purposes and provide nothingspecial for their residents, the association hasdeveloped legislative principles for special careunits (4).

The association’s legislative principles are in-tended to direct legislators’ and regulators’ attentionto the primary areas a State should include whendrafting special care unit legislation or regulations.The 11 areas cited in the association’ s principles are:1) statement of mission, 2) involvement of familymembers, 3) plan of care, 4) therapeutic programs,5) residents’ rights, 6) environment, 7) safety, 8)staffing patterns and training, 9) cost of care, 10)quality assurance, and 11) enforcement (4). Thelegislative principles recommend that States involveproviders, consumers, ombudsmen, activities andoccupational therapists, environmental design spe-cialists, fire and safety officials, and licensure andsurvey officials in drafting specific standards in eachof these areas.

In July 1992, the association released “Guide-lines for Dignity: Goals of Specialized Alzheimer/Dementia Care in Residential Settings.” The 41-page “Guidelines” document discusses eight goalsand guidelines for achieving the goals. The docu-ment is not intended to be used for regulatorypurposes.

The Alzheimer’s Society of Canada—Forthcoming Guidelines

In 1990, the Alzheimer’s Society of Canada, aprivate voluntary association, received a $500,000grant from the Canadian Government for a 3-yearproject to develop guidelines for the care of individ-uals with Alzheimer’s disease in a variety ofsettings, including special care units (7,313). In thefirst year of the grant, a literature review wasconducted; Alzheimer’s Society staff members vis-ited various care settings; and a questionnaire wassent out to 15,000 family caregivers. In 1991, draftguidelines were developed by the society’s staffwith the assistance of an advisory committee (401).The guidelines, which were circulated for outsidereview in early 1992, address 11 areas: involvementin decisionmaking, assessment, staffing, programsand activities, training and education for caregivers,support for caregivers, physical and chemical re-straints, preventing and responding to abuse, envi-ronmental design, and transportation. The societyintends to publish two documents based on theguidelines--one document intended primarily forfamilies and one intended primarily for governmentand provider agencies.


The Alzheimer’s Coalition of Connecticut—Forthcoming Guidelines

The Alzheimer’s Coalition of Connecticut, aprivate nonprofit organization that was formed afterthe expiration of the Governor’s Task Force onAlzheimer’s Disease, has developed a draft docu-ment that describes the important features of aspecial care unit. Although State officials have beeninvolved in the development of the document, it isnot intended as the basis for State regulations (512).

U.S. Department of Veterans Affairs—Forthcoming Guidelines

As discussed in chapter 3, a 1989 survey by theU.S. Department of Veterans Affairs (VA) identifiedspecial care units at 31 of the 172 VA medicalcenters nationwide. In 1991, the VA conducted sitevisits to 13 of the special care units and telephoneinterviews with staff of many of the other units.Partly on the basis of these site visits and interviews,the VA is developing guidelines for “SpecializedAlzheimer’s/Dementia Units” at VA medical cen-ters (103). The guidelines describe three types ofu n i t s - ’ diagnostic,’ “behavioral management,”and ‘‘long-term care’ units. The guidelines discussthe goals and objectives of the units, the types ofresidents served, unit size and location, staffing,space and environmental factors, program evalua-tion, and quality assurance.

Multi-facility Nursing Home Corporations—Special Care Unit Guidelines

Some multi-facility nursing home corporationshave guidelines for special care units in the nursinghomes they own, Hillhaven Corp., which had 56nursing homes with special care units in late 1990,has an extensive policy and procedures manual forthe units (187). The manual was first developed in1982 and was updated in 1984 and 1988 (337). Itdelineates the philosophy and treatment modalitiesof the units, their admission and discharge criteriaand procedures, family services, use of restraints,staff training, and other features. The manual in-cludes resident assessment instruments, guidelinesfor running a family support group, and a qualityassurance checklist.

Unicare Health Facilities, which had 15 nursinghomes with special care units in late 1990, also hasa manual for its units, called ‘‘Lamplighter Units”

(281). The manual describes the care needs ofnursing home residents with Alzheimer’s diseaseand the philosophy, admission criteria, assessmentprocedures, staffing, and care methods of the com-pany’s special care units. The manual includes aresident assessment instrument. Other multi-facilitynursing home corporations that have facilities withspecial care units may also have guidelines for theunits.

The Joint Commission on Accreditation ofHealthcare Organizations—Draft Surveyor Guidelines

Since 1989, the Joint Commission on Accredita-tion of Healthcare Organizations (JCAHO) has beenworking on guidelines to assist its surveyors inevaluating special care units in the facilities itaccredits. As noted earlier, JCAHO is a privateorganization that currently accredits about 1000nursing homes in the United States (214). JCAHO’seffort to develop guidelines evolved from concernsand questions raised by its surveyors about how toevaluate the increasing number of special care unitsthey were seeing in nursing homes accredited by thecommission (434).

JCAHO’s surveyor guidelines, currently out forreview in a fourth draft, are based on the commis-sion’s standards for all nursing homes (213,435). Nochanges have been made to the basic standards.Instead, statements have been added next to many ofthe standards to explain the implications of thestandard for the care of residents with dementia andto describe the process surveyors should follow inevaluating and scoring the special care unit on thatstandard.

The 152-page fourth draft of the surveyor guide-lines is much longer than the other guidelinedocuments discussed in this section. It provideswhat is, in effect, a detailed answer to the question,“What constitutes appropriate care for nursinghome residents with dementia?” Some commenta-tors will undoubtedly disagree with some of itscomponents, and certain of the components proba-bly apply as much to nondemented as dementednursing home residents. There are also instances inwhich the guidelines tell surveyors to determinewhether appropriate or proper care has been given,leaving open the question of what appropriate orproper care is; the frequency of these instances hasdecreased, however, in each successive draft of the

Chapter 5-Regulations And Guidelines For Special Care Units . 155

document. The guidelines are informative and thought-provoking at the least, and the commission is to becredited with creating comprehensive surveyor guide-lines that fit within the broader context of itsstandards for all nursing homes.

JCAHO intends to pilot test the surveyor guide-lines in the summer 1992 in six special care units inthe Chicago area (435). Using the guidelines, twoJCAHO surveyors will inspect the six units. Within2 days, two representatives of the Alzheimer’sAssociation will visit the same units. The surveyors’findings and the observations of the Alzheimer’sAssociation representatives will be compared todetermine whether the guidelines identify the prob-lems that concern consumers.


The completed guideline documents discussed inthe preceding sections are intended to educate andinform. They identify areas that require specialconsideration in the care of nursing home residentswith dementia, but unlike the State regulationsdiscussed earlier in the chapter, the guidelinedocuments generally do not prescribe particularfeatures for special care units. The JCAHO draftsurveyor guidelines differ from the other guidelinedocuments in that they do prescribe many detailedfeatures for special care units, but the JCAHOguidelines are also intended primarily to educate andinform surveyors and to identify areas of specialconsideration in the care of residents with dementia.

The areas of special concern identified in theguideline documents are: activity programs, admis-sion and discharge criteria, conditions of participa-tion, cost and reimbursement, enforcement, familyinvolvement, philosophy and goals, physical envi-ronment, physical restraints and psychotropic medi-cations, plan of care, policies and procedures,quality assurance, research, resident assessment,resident rights, safety egress control, specializedservices (e.g., physician, nursing, social work, anddietary services), and staffing. These areas ofconcern are not necessarily mutually exclusive, andsome are addressed in only one of the guidelinedocuments. Nevertheless, there appears to be someagreement at present about the areas of concern. TheState regulations discussed earlier fit conceptuallywithin the same areas of concern.

Having agreement about areas of concern ishelpful in organizing a discussion about particular

features that might be desirable or required in specialcare units. On the other hand, agreement about areasof concern is not the same as agreement aboutparticular features. For example, agreement thatactivity programs and physical environment areareas of concern does not constitute agreement aboutwhat the activity programs or physical designfeatures should be. It is OTA’s observation that indiscussions about guidelines and regulations forspecial care units, agreement about areas of concernoften masks considerable disagreement about partic-ular features of the units and gives a misleadingimpression that there is consensus about at leastsome particular features that are desirable andshould be required in special care units. Each of thecompleted guideline documents stresses the currentuncertainty about the importance of particular fea-tures and the need for research to clarify manyunresolved questions in this area.

Finally, it should be noted that like the Stateregulations for special care units discussed earlier,the completed guideline documents have not beendeveloped in the context of the nursing home reformprovisions of OBRA-87. Moreover, some of thespecific guidelines in these documents duplicateprovisions of OBRA-87 that apply to all nursinghomes.

CONCLUSIONAs of early 1992, six States had regulations for

special care units. Five States were in the process ofdeveloping regulations, and other States were con-sidering doing so. These State regulations areintended primarily to assure that special care unitsare not established and operated solely for marketingpurposes and do actually provide something specialfor their residents. The regulations have been and arebeing developed in the absence of consensus amongexperts about the particular features that are neces-sary in a special care unit and research-basedevidence to support requirements for any particularfeatures.

Several public and private organizations havedeveloped or are developing guidelines for specialcare units. These guidelines identify areas thatrequire special consideration in the care of nursinghome residents with dementia but generally do notprescribe particular features for special care units.The six completed guideline documents stress thecurrent uncertainty about the importance of particu-

328-405 - 92 - 6 Q L 3


lar features and the need for research on theeffectiveness of various approaches to the care ofnursing home residents with dementia. These sixguideline documents are not intended to be used forregulatory purposes.

The nursing home reform provisions of OBRA-87create a broad, comprehensive regulatory structureaimed at assuring high-quality, individualized nurs-ing home care for all residents. As described in thischapter, the provisions of OBRA-87 address manyof the complaints and concerns of families andothers about the care provided for residents withdementia in many nursing homes. The provisions ofOBRA-87 rarely mention cognitive impairment ordementia, but the resident assessment system devel-oped to implement OBRA-87 focuses clearly on theassessment of a resident’s cognitive status and theproblems and care needs that are common amongnursing home residents with dementia. Once a

resident’s needs are identified, OBRA regulationsrequire that the needs be met.

If fully implemented, the provisions of OBRA-87would improve the care of nursing home residentswith dementia. The problem with OBRA-87 fornursing home residents with dementia is the sameproblem faced by State officials and others who aretrying to develop regulations for special care units:i.e., the lack of agreement among experts aboutexactly what constitutes appropriate nursing homecare for individuals with dementia and the lack ofresearch-based evidence of the effectiveness ofvarious approaches to their care. Solving thisproblem through Federal support for projects toevaluate different approaches to care may eventuallyprovide a substantive basis for regulations. In themeantime, special care units are ideal settings for thenecessary research.

Chapter 6

Regulations And Interpretations ofRegulations That Interfere With

The Design And Operation ofSpecial Care Units

ContentsPage

INTRODUCTION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 159THE IMPACT OF REGULATIONS ON THE DESIGN AND OPERATION

OF SPECIAL CARE UNITS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .160THE IMPACT OF INTERPRETATIONS OF REGULATIONS ON THE

DESIGN AND OPERATION OF SPECIAL CARE UNITS . . . . . . . . . . . . . . . . . . . . . . 163CASE EXAMPLES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 166

Unit Design . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 166Room Arrangement . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 167Keypad-Operated Locking Systems . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 167Dutch Doors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 167Dietary Practices . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 168staffing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 168

METHODS TO ALLOW INN0VATION IN THE DESIGN AND OPERATIONOF SPECIAL CARE UNITS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .168

CONCLUSION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 170

TablesTable Page6-l. Regulations and Standards That Interfere With the Use of Physical Design

Features in Special Care Units . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ● .,.,,.. 1616-2. Massachusetts Agencies Regulating Nursing Homes . . . . . . . . . . . . . . . . . . . . . . . . . . . 1646-3. New York Agencies Regulating Nursing Homes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 165

Chapter 6

Regulations And Interpretations of Regulations That InterfereWith The Design And Operation of Special Care Units

INTRODUCTIONIn the course of this study, OTA heard numerous

complaints from special care unit operators andothers about instances in which Federal, State, andlocal government regulations or interpretations ofregulations interfered with the use of particularphysical design features, patient care practices, andstaffing arrangements they believed would be appro-priate for individuals with dementia. Instances ofseveral different types have been described to OTA:

instances in which nursing homes could not getapproval for particular physical design fea-tures, patient care practices, or staffing arrange-ments for a special care unit;instances in which approval for particularphysical design features, patient care practices,or staffing arrangements was given by onegovernment agency and later denied by anothergovernment agency;instances in which approval for particularphysical design features was held up for years,thus adding enormously to the cost of buildingor remodeling the unit; andinstances in which government officials dis-allowed particular physical design or otherfeatures of special care units on the basis ofregulations that were later found not to exist.

From a societal perspective, one objective-andperhaps the most important objective of special careunits-is to develop better approaches to caring fornursing home residents with dementia. Instances ofthe types described above discourage innovation.They interfere with the implementation and evalua-tion of particular physical design or other features.More importantly, repeated instances of these typescreate an atmosphere in which nursing home opera-tors are reluctant to attempt innovations.

The problem of regulations and interpretations ofregulations that interfere with the use of innovativephysical design and other features is not limited tospecial care units. In 1991, the Task Force on Agingof the American Institute of Architects sponsored aninvitational conference on the design of facilities forolder people (11). Conference participants included

architects, gerontologists, health care and socialservice providers, regulators, and representatives ofaging advocacy groups. The conference plannersanticipated that a wide range of issues and concernswould arise. To the contrary, the issues and concernsraised by the participants were “remarkably com-mon...and surprisingly concentrated’ (1 1). Accordingto the conference report:

Top on the list of major issues identified by thegroup was the plethora of regulations which hasenveloped the long-term care industry. Even with theadmission and recognition of the problem by mostFederal, State, and code bodies, the regulatory andcode environment continues to become increasinglyconvoluted instead of coalescing into simpler basesof information. These problems afford little opportu-nity for design or construction efficiencies to de-velop. The lack of regulatory consistency drives upthe cost of professional services, each project’sdevelopment timeline, and, in turn, each project’scost. This unnecessary increase in project cost is thenpassed onto the resident (11).

In 1987, members of the American Association ofHomes for the Aging formed a subgroup, theEnvironmental Code Work Group, to identify, callattention to, and eventually change regulations thatinterfere with innovative design in all kinds ofresidential facilities for older people (380). In 1990,the Association received a grant from the RetirementResearch Foundation to establish a national clear-inghouse on aging and environmental design codes(379). The clearinghouse is a central source ofinformation about research and trends in environ-mental design for older people and about Federal andState regulations and codes that affect the design offacilities for older people. The primary purpose ofthe clearinghouse is to assist facilities whose designplans are challenged by government officials orsurveyors.

The extent to which regulations and interpreta-tions of regulations interfere with the design andoperation of special care units is unclear. Many ofthe respondents to a 1987 survey of a nonrandomsample of 99 special care units in 34 States reportedthat regulations had made the creation of theirspecial care unit “difficult, expensive, or impossi-

–159–


ble:” 17 percent of the respondents cited localbuilding code regulations; 18 percent cited Statenursing home licensing regulations: 26 percent citedlocal fire code regulations; and 37 percent cited Statefire code regulations (494). OTA is not aware of anyother data on the proportion of special care unitsaffected by this problem.

To learn more about the problem, OTA contractedfor an exploratory study of regulations that mightinterfere with the design and operation of specialcare units (201). The study focused on regulations intwo States, Massachusetts and New York. OTA’scontractor and OTA staff also interviewed Federaland State officials, consumer groups, architects,staff members of two national nursing home associa-tions, and others in the nursing home industry toobtain their opinions about the problem. The resultsof the study and these interviews are summarized inthis chapter. Examples of instances in which regula-tions or interpretations of regulations have interferedwith the design or operation of special care units aredescribed. The last section of the chapter discussesthe need for a waiver process that would allowspecial care units to implement a wide variety ofinnovative physical design features, patient carepractices, and staffing arrangements. Such a processwould have to include mechanisms to evaluate theinnovations, The process would also have to includemechanisms to protect residents’ rights in units inwhich innovative approaches to care were beingtested.

THE IMPACT OF REGULATIONSON THE DESIGN AND

OPERATION OF SPECIALCARE UNITS

To understand the impact of regulations on thedesign of special care units, it is useful to understandthe way design decisions are made (201). Architectsusually create a list of all the requirements a buildingmust meet to serve its designated purpose. Eachrequirement defines a range of possible designsolutions. Regulations are among the requirementsan architect must include.

As described in chapter 5, nursing home regula-tions include:

. Federal regulations for Medicare and Medicaidcertification of nursing homes,

● State licensing regulations,

● State certificate of need regulations, and. other State and local government regulations

that apply to nursing homes, such as zoning,building, fire safety, and sanitation code regula-tions.

In addition, Federal, State, and local governmentnursing home regulations incorporate standardsdeveloped by various nongovernmental organiza-tions. Federal regulations for Medicare and Medi-caid certification of nursing homes require nursinghomes to comply with the Life Safety Code of theNational Fire Protection Association (NPFA) or anequivalent State fire and safety code (463). Otherstandards incorporated into some nursing homeregulations are the “Specifications for MakingBuildings and Facilities Accessible to and Usable byPhysically Handicapped People” developed by theAmerican National Standards Institute (ANSI), the“Guidelines for Construction and Equipment ofHospital and Medical Facilities” developed by theAmerican Institute of Architects, and building codesdeveloped by the Building Officials and CodeAdministrators International, Inc. (BOCA).

All these regulations and standards create require-ments that restrict design options. Because of thelarge number and specificity of the regulations andstandards, there may be few design solutions left(201). As a result, nursing homes are sometimes saidto have been designed “with a cookie cutter. ”

OTA’s contractor analyzed Federal regulations,State regulations in Massachusetts and New York,and incorporated standards to identify regulationsand standards that might preclude use of particularphysical design features in special care units. Table6-1 shows the results of the analysis. Federal andState regulations and standards were identified thatmight preclude the use of nine design featuresintended to serve three purposes: 1) coping withresident wandering, 2) reducing agitation and cata-strophic reactions, and 3) making the unit morehome-like in appearance (201). Some of the designfeatures, e.g., placement of resident rooms off sittingrooms, are specifically prohibited by the regulationsand standards. Other design features, e.g., secureexits and use of familiar furniture, are not specifi-cally prohibited in these States, but the regulationsand standards limit the ways in which these designfeatures can be implemented.

Another analysis of Federal regulations, Wiscon-sin State regulations, and incorporated standards had

Chapter Regulations That Interfere With The Design and Operation of Special Care Units ● 161

Table 6-l—Regulations and Standards That Interfere With the Use ofPhysical Design Features in Special Care Units

Federal State IncorporatedDesign Features Regulations Regulations Standards

To Cope With WanderingPublic law 100-203 Section4201 (181 9)(6)(D)(d) (2)(B) “A Skilledfacility must meet such provisionsof. . the Life Safety Code of theNFPA as are applicable to nursinghomes.”

MA105CMR150.017(B) (5) “ActivityAreas: All facilities shall provide onevery floor and for every unit acomfortable, convenient, well-Iighted and ventilated sitting room,day room, or solarium with a directoutside exposure that is separatefrom patient or resident rooms.”

1. Create walking loops by build-ing around interior courtyard,atrium, or activity area

NFPA: 12-2.4.2 “Egress shall notrequire return through the zone offire origin.”

2. Secure exits NFPA: 12-2.5.5 “Every corridor shallprovide access to at least twoapproved exits.” 12-2.2.2.4 “Doorswithin a required means of egressshall not be equipped with a latchor lock that requires the use of atool or key from the egress side.”

To Reduce Agitation, Control Ca-tastrophic Reactions

1. Use of interior finishes thatreduce noise and glare

MA105CMR1 50.017B (12)(b) “Wallsshall have a water-proof, glazed,painted, or similar surface that willwithstand washing; floors shall bewater-proof, grease-proof and re-sistant to heavy wear.”

NFPA: 12-3.3.1 “Interior finish onwalls and ceilings shall be Class Aor Class B.” 12-3.3.2 “Newly in-stalled interior floor finish in corri-dors and exits shall be Class L“

2. Use of clutch doors Massachusetts Department of PublicHealth, Division of Health Care Quality:“We have strong objections to theuse of clutch doors.” New York Bu-reau of Long Term Services: “Dutchdoors are frowned on. They can beused as a way of locking people intotheir rooms. Our fire safety peopleare not thrilled about them.”

NFPA: 12-3.6.3.6 “Dutch doors maybe used. . . Both upper and lowerleaf shall be equipped with a latch-ing device, and the meeting edgesof the upper and lower leaves shallbe equipped with an astragal, rab-bet, or bevel.”

Residential Ambiance1. Bedrooms off sitting rooms or Reg. 405-1134 “The skilled nursing

facility must meet the applicable pro-visions of the 1985 edition of the LifeSafety Code” and “Each room hasdirect access to a corridor.”

New York Public Health Law Sec.414.4(b) “The facility shall complywith the pertinent provisions of NFPA101, Life Safety Codes.”

NFPA Life Safety Code: 12-2.3.3“Aisles, corridors, and ramps re-quired for exit access in a hospitalor nursing home shall be at least 8ft (244 cm) in clear and unob-structed width.” 12-2.5.1 “Everyhabitable room shall have an exitaccess door leading directly to anexit access corridor.”

residential scale hallways

2. Private rooms Medicaid will reimburse at semi-private rate only.

Rumor among providers in New Yorkthat the State will not allow over 1/3private rooms. State agency deniesthis, says there are several Medicaidfacilities with all single rooms.

Uniform Federal Accessibility Stand-ards: 6.3(2) and (3): “Each bed shallhave a minimum clear floor space of42 in (1065 mm), preferably 48 in(1220 mm), between the foot of thebed and the wall; 36 in (91 5 mm). . .oneach side of the bed.”

ANSI Standards3.

4.

5.

Allow residents to control fur-niture arrangements, Allow res-idents in semi-private roomsequal access to windows anddoors

Eliminate formal nurses’ sta-tion

Reg. 405.1 134(d) “Each nursing unithas at least the following:. . nurses’station. . equipped to register pa-tient calls.”

Allow residents to use familiar NFPA 31-4.5.2 Bedding, furnish-ings, decorations in health careoccupancies. . shall be flame re-sistant.

furniture

SOURCE: J. Hyde, “Federal Policy in the Regulation and Funding of Special Care Alzheimer’s Units; The Role of Federal, State, and Municipal Regulation,”contract report prepared for the ~fice of Technology-Assessment, August 1990.


similar findings (94). That analysis also idenitfiedregulations and standards that might preclude theuse of design features intended to cope with residentwandering, to reduce agitation and catastrophicreactions, and to make the unit more home-like inappearance. In addition to the regulations andstandards identified by OTA’s contractor, the Wis-consin analysis identified a Wisconsin regulationand a Life Safety Code standard that require frequenttesting of alarms on the unit, which the analystsbelieve might increase resident agitation. They alsoidentified a Wisconsin regulation for resident roomsize which allows little flexibility in arranging theroom for other than sleep purposes.

Although both of these analyses identified regula-tions and standards that might preclude use ofcertain design features in special care units, thenumber of such regulations and standards and thenumber of design features affected are much smallerthan one would expect, given the complaints citedearlier. Moreover, many of the design features arenot specifically prohibited. Instead, as noted above,the regulations and standards limit the ways in whichthe design features can be implemented.

For several reasons, the impact of regulations andstandards on the design of special care units isgreater than is indicated by the results of the twoanalyses. First, the analyses do not include localgovernment regulations which may interfere withuse of certain design features. Second, the analysesdo not address combinations of regulations whichtogether preclude use of design features that are notspecifically prohibited by any one regulation. Third,the analyses generally do not address interpretationsof regulations that may preclude the use of physicaldesign features not explicitly prohibited by regula-tions or standards. The case examples later in thischapter illustrate each of these situations.

In addition, cost constraints often increase theimpact of regulations and standards on the design ofspecial care units. Due to cost constraints, specialcare units frequently are designed to meet theminimum allowable standards. Design options mayexist that would meet the standards and fulfill otherobjectives of the special care unit planners, but theseoptions are ruled out because they cost too much(41,201). In such instances, it is the combination ofcost constraints and regulations, not the regulationsalone, that precludes use of particular design fea-tures.

One example of a combination of cost constraints

and regulations that interferes with innovative de-sign in special care units pertains to regulations insome States that require a nurses’ station on eachnursing home unit. The Wisconsin nursing homeregulations state, for example:

A centrally located nursing station having visualaccess to all resident room corridors must beprovided. The station should consist of a desk orwork counter, operational telephone, and a nurse callsystem and should be situated next to a medicinepreparation room (351).

Because of the cost of constructing and staffing anurses’ station, regulations that require a nurses’station on each unit, and particularly regulations thatrequire a nurses’ station with visual access to allresident room corridors, encourage construction oflarge units with long, institution-like corridors (94).In contrast, if cost were not a factor, a variety ofinnovative designs could be used to create small,home-like units with a nurses’ station that meets theregulations.

Financing considerations also increase the impactof regulations and standards on the design of specialcare units. Agencies that provide financing fornursing home construction, such as banks and Statebond agencies, are often wary of special usebuildings, since the buildings have limited reusepotential (201). The agencies are more likely toprovide financing for facilities that meet generic,albeit minimum, standards. Therefore, even if afacility receives approval for a design innovation,the facility may not be able to find financing to buildor remodel the unit.

State certificate of need programs may alsoincrease the impact of regulations and standards onthe design of special care units. Certificate of needprograms sometimes disapprove plans that includefeatures which exceed minimum requirements, e.g.,resident room size that exceeds the required mini-mum square footage. These plans are disapprovedbecause it is assumed that the features will increasethe cost of the facility and that these increased costswill eventually be passed on to Medicaid (202,378).

A final factor that increases the impact of regula-tions and standards and discourages innovation inspecial care units is the large number of agenciesinvolved in regulating nursing homes in manyStates. Tables 6-2 and 6-3 show the agenciesinvolved in regulating nursing homes in Massachu-

Chapter Regulations That Interfere With The Design and Operation of Special Care Units ● 163

setts and New York. The agencies listed in thesetables are responsible for site control, certificate ofneed evaluations, licensure, financing, Medicare andMedicaid certification, and/or final inspections (201).The large number of agencies involved in each ofthese regulatory functions is daunting. It increasesthe difficulty special care unit operators and othershave in obtaining approval for innovative physicaldesign features or even understanding how to seeksuch approval. The large number of agencies proba-bly also increases the likelihood that even ifapproval for the use of the innovative features isgranted by one agency, it will later be denied byanother.

Like physical design features, some patient carepractices, staffing arrangements, and other opera-tional aspects of special care units are precluded byregulations and standards. These operational aspectsof the units are probably more likely than thephysical design features to be affected by interpreta-tions of regulations, as discussed in the followingsection. Operational aspects of special care units arealso affected by cost constraints which require theunit to operate as close to the minimum allowablestandards as possible. Although patient care andstaffing options exist that would meet the require-ments and fulfill other objectives of the unitoperators and staff, these options frequently are notimplemented because they cost too much.

THE IMPACT OFINTERPRETATIONS OF

REGULATIONS ON THE DESIGNAND OPERATION OF SPECIAL

CARE UNITSInterpretations of regulations are unavoidable.

When nursing home surveyors, building inspectors,and fire marshals inspect a special care unit, theyhave to apply their understanding of existing regula-tions to the particular characteristics of the unit.Likewise, when government officials review designplans for a new special care unit, they have to applytheir understanding of the regulations to the particu-lar features of the plan. Unless there is a compellingreason for allowing innovations, these individualsare likely to be conservative in their interpretations.

The format of most regulations is conducive toconservative interpretations (233,378). Existing reg-ulations usually consist of a series of requirements

without accompanying statements about the purposeor desired outcomes for the requirements. Anexplicit statement about the purpose or desiredoutcome of a requirement would give governmentofficials, surveyors, and others justification for atleast considering an innovation that might fulfill thepurpose of the requirement, if not its precisestipulation. In the absence of such a statement,government officials, surveyors, and others areunlikely to take the risk of allowing the innovation.

Individual surveyors differ in their interpretationsof the same regulations. OTA has heard aboutinstances in which surveyors interpreted regulationsthat could have been obstacles for a special care unitin a way that made them not obstacles and otherinstances in which surveyors interpreted regulationsthat need not have been obstacles in a way that madethem obstacles.

Surveyors’ attitudes about nursing homes arelikely to influence their interpretations of the regula-tions. A study of nursing home regulation in NewYork, Virginia, and England identified two differentregulatory models (117). In one model, surveyorsregard the nursing home operator as an ‘‘amoralcalculator who will risk breaking the rules for aprofit. ” In this model, the surveyor functions as apoliceman, and the inspection process is formal,legalistic, and adversarial. In the other model,surveyors regard the nursing home operator asfallible but well-intentioned. The surveyor functionsas a consultant, and the inspection process isinformal and cooperative. In the United States, mostsurveyors probably function more in the first modelthan the second; thus, they are less likely to trustnursing home operators or to be supportive offacility-initiated innovations.

As noted earlier, OTA has been told aboutinstances in which surveyors and other governmentofficials have disallowed the use of innovativephysical design or other features of special care unitson the basis of regulations that were later found notto exist. In these instances, the officials probablyassumed the regulations existed because “that’s theway it’s always been done. ’ Thus, tradition andprecedent can preclude innovation in special careunits (201,378).

Given the large number and complexity of exist-ing regulations and standards, it can be difficult todetermine whether a given regulation exists. Forspecial care unit operators and others who are told


Table 6-2—Massachusetts Agencies Regulating Nursing Homes

Agency Function Codes/regulations/standards

1. Site ControlLocal Planning Department Certifies that the site is zoned for nursing home

use or is eligible for zoning variance

Reviews environmental impact

Local zoning ordinances

Massachusetts Environmental Policy Act, Na-tional Environmental Policy Act (especially whenthe project will receive Federal funding), andother laws, as applicable

State Executive Office of EnvironmentalAffairs

Il. Determination of NeedDetermination of Need Office, State De-partment of Public Health

1.

2,

3

Determines that applicant has control of asite which can reasonably be expected to beappropriately zoned and have environmentalimpact approved

Determines bed need Uses a rate of 35 beds per 1000 population overage 65 based on a State census broken downby 6 regions

Square footage must meet the Federal andDetermines ’’reasonableness of capital costs”State minimum of 318 sq ft per bed but be nomore than 400 sq ft per bed;uses Marshall’s Evaluation Service to deter-mine allowed construction costs, including ar-chitecture, site evaluation, and constructioncosts; currently about$100 per sq ft

4. Follows approved projects through Iicensureto assure compliance

Determines if projected operating costs arereasonable

Rate Setting Commission Projected operating costs must be within onestandard deviation of the median costs of otherfacilities in the area

Medicaid Division, State Public WelfareDepartmentExecutive Office of Elder Affairs

Reviews application to ensure need

Reviews for appropriate affiliation agreementsand the management history of proposed oper-ators

Ill. LicensureDivision of Health Care Quality, StateDepartment of Public Health and Architec-ture Department and Patient Care Sur-veyors

License the facility, assuring compliance withState and Federal Iaws concerning the physicalplant and patient care

Massachusetts: 105CMI 50-1 59 Federal: Medi-care and Medicaid law, HCFA rulings, andrelated standards (e.g., Life Safety Code andANSI)

Fire department for the municipalityin which the facility is located

Assures fire safety and compliance with codes Life Safety Code and local ordinances

Building inspector for the municipal-ity in which the facility is located

Ensures compliance with State building codes;decisions maybe appealed to the State inspec-tion Division, Building Section

State Building Code

IV. Obtaining Construction FinancingState Health Care Finance Agency,HUD, or financial institutions

Ensure financial viability of the project Review all other approvals, apply own criteriawhich may include requirements that the facilitycould be used for other purposes

V. Certification for Medicare and Medi-caid

State Rate Setting Commission Sets allowed reimbursement rates for Medicareand Medicaid

State policies

Medicaid Division, State Public WelfareDepartment

Enrolls provider in Medicaid Must have a Determination of Need certificate,be licensed, have rate set, and be in compli-ance with Federal Medicaid laws and regula-tions

VI. Final InspectionsAll agencies Any agency which has had prior authority may

review for compliance before occupancyInspect for health code complianceLocal Health Departments State and local health codes

SOURCE: J. Hyde, “Federal Policy in the Regulation and Funding of Special Care Alzheimer’s Units: The Role of Federal, State, and Municipal Regulation,”contract report prepared for the ~fice of Technology -Asse”=ment, August 1990.

Chapter 6-Regulations That Interfere With The Design and Operation of Special Care Units ● 165

Table 6-3-New York Agencies Regulating Nursing Homes

Agency Function Codes/regulations/standards

L Site ControlLocal Planning Department Site control, zoning requirements, availability

of utilities, historical, land, environmental andbuilding issues, soil testing, and financingvehicle

Local and State zoning and land-use codes

Il. Certificate of NeedState Department of Health, Office ofHealth Systems Management (OHSM),Bureau of Project Management. Cop-ies then submitted to local HealthSystems Agency (HSA), internal re-view bureaus, and OHSM Area Office

Reviews for need, financial feasibility, char-acter and competence

10NYGRR 410-416; 420-422; 730-734

Bureau of Facility Planning Ensures that the application is in accordancewith the current State Medical Facilities Plan(as devised by HSA and OHSM)

Medical Facilities Plan

Bureau of Facility and Service Review

Bureau of Long Term Care Services

Ensures there is a public need for the facility State Need Methodology Regulations

10NYCRR: NY State Public Health LawEnsures that the proposed operator meetsthe character and competence requirementsand that the proposed programs meet regu-latory requirements and address the needsof the population to be served

Bureau of Architectural and Engineer-ing Facility Planning

Ensures that the proposed facility meetsState construction standards, Federal re-quirements, and ANSI standards

10 NYCRR 710, ANSI

Bureau of Financial Analysis Review Ensures that the application is financiallyfeasible, i.e., the applicant has sufficientfinancial resources to build the facility, andwhen the facility is in operation, sufficientincome to remain financially sound

Depending on the financing vehicle, bothFederal and State regulations come into play

Ill. LicensureDivision of Health Facility Planning,State Department of Health

Reviews and approves construction plansand specifications

10NYCRR 710-711; 713-714

10NYCRR 410-416; 420-422; 730-734Division of Health Care Standards &Surveillance, State Department ofHealth

Assures compliance with State operationaland patient care requirements

Division of Health Facility Planning,State Department of Health

Issues Operating Certificate, attesting tocompliance with State Hospital Code re-quirements

10 NYCRR 401

IV. Obtaining Construction FinancingNew York Finance Agencies, HUD, orfinancial institutions

Ensure financial viability of project Review prior approvals, apply own criteriawhich may include requirements that facilitybe used for other purposes

V. Certification for Medicare and Medi-caid

Division of Health Care Standards &Surveillance, State Department ofHealth

Assures compliance with Medicare/Medicaidoperational and patient care standards

42 CRF 442; 483

VI. Final InspectionsDivision of Health Facility Planningand Division of Health Care Standards& Surveillance, State Department ofHealth

Inspect building for compliance with ap-proved plans

10 NYCRR 710

SOURCE: J. Hyde, “FederalPolicy in the Regulation and Funding of Special Care Units: The Role of Federal, State, and Municipal Regulation, ’’contract reportprepared for the Office of Technology Assessment, August 1990.


that regulations prohibit a particular physical designor other feature, the prospect of searching thenumerous applicable regulations and codes for agiven regulation is formidable. Sometimes it isalmost impossible to prove a given regulation doesnot exist (201,378).

Architects, special care unit operators, and othersoften fear that disputing government officials’ orsurveyors’ interpretations of regulations will havenegative consequences beyond the particular designor other feature in question. They fear the officialswill delay or deny final approval for the unit.Likewise, they fear that if they annoy the surveyors,the nursing home or special care unit will be citedlater for violations of other regulations. Because ofthe large number and complexity of nursing homeregulations, virtually all nursing homes-even verygood facilities-are out of compliance with oneregulation or another at any one time. Given thesefears, some architects, special care unit operators,and others choose not to dispute officials’ orsurveyors’ interpretations of the regulations and to“keep a low profile” instead.

Fire safety regulations and interpretations of theseregulations are often cited as limiting the use ofinnovative physical design features in special careunits. Requirements of NFPA’s Life Safety Code,which is primarily a fire safety code, are identifiedas regulatory barriers with respect to six of the ninedesign features listed in table 6-1. As noted earlier,State and local fire code requirements were theregulations cited most frequently in the 1987 surveyof 99 special care units as making the creation of thespecial care unit “difficult, expensive, or impossi-ble” (494).

Fire safety inspection procedures for nursinghomes vary in different States, but most of theinspections are conducted by local fire marshals(522). These local fire marshals have considerableindependence in interpreting and enforcing firesafety regulations. It is OTA’s impression fromdiscussions with Federal and State officials andnursing home operators that within their ownjurisdictions, local fire marshals’ interpretations ofthe regulations carry great weight and are generallyaccepted as final.

As noted earlier, the Federal Medicare andMedicaid regulations incorporate the NFPA LifeSafety Code, but the Federal regulations also allowStates to use their own fire and safety codes. Many

localities also have fire safety codes. The HealthCare Financing Administration, NFPA, and Statefire marshals’ offices offer training for local firemarshals about fire safety regulations and inspectionprocedures, but fire marshals generally are notrequired to take the training (217,298,522).

The objectives of fire safety regulations fornursing homes are to minimize the possibility offrees and to limit their effects (217,522). Althoughthere have been few deaths from nursing home freesin the United States in past 15 years (probably lessthan 30), the prospect of a nursing home fire ishorrifying to many people, and the objectives ofpreventing such a fire or limiting its effects takeprecedence in their view over other possible objec-tives. Fire marshals and fire safety inspectorsprobably are more likely than other people to holdthis view. As a result, they are unlikely to approveinnovations they believe might increase the risk ofa fire, regardless of the potential benefits of theinnovations.

CASE EXAMPLESThe following case examples illustrate the impact

of regulations and interpretations of regulations onthe design and operation of special care units. Someof the examples show how a combination ofregulations or a combination of cost constraints andregulations preclude the use of physical design orother features that are not specifically prohibited byany one regulation. Some of the examples also showhow regulations that are probably appropriate fornondemented residents interfere with the use ofdesign and other features that may benefit residentswith dementia.

Case Examples: Unit Design

One nursing home received a State demonstrationgrant for a special care unit. An innovative plan wasdrawn up for a unit composed of several discretemodules in which six to eight residents would sharea single sleeping area, living room, and activityareas. The sleeping room would have fewer squarefeet per resident than the traditional nursing homeunit, but that space would be made up in the livingroom and activity areas. This unit design wasconsidered more appropriate than the traditionaldesign for residents with dementia because theresidents would interact with a smaller number ofother residents and staff members every day and thuswould be less agitated. The unit could not be built

Chapter 6--Regulations That Interfere With The Design and Operation of Special Care Units . 167

because of regulations that require: 1) no more thanfour residents per room, 2) a minimum of110 squarefeet of space per resident in the sleeping room (asopposed to the 40 square feet per resident in theproposed design), and 3) bedroom doors that openonto a main corridor (202).

A hospital that received a State demonstrationgrant for a special care unit wanted to build a unitwith the residents’ rooms arranged in a large looparound a central dining/activity room. This centralroom would not have windows. The committee ofexperts assembled to advise the hospital thought thelack of windows in the central room would benefitthe residents because it would allow the facility tomaintain even light levels and reduce environmentalstimulation, thus minimizing sundowning behaviorand other manifestations of resident agitation. Thelack of windows in the central room violated Stateregulations, however. After months of meetings andhundreds of hours of architect and staff time, theState granted a waiver for the innovation. Thewaiver was temporary, however, and the facility hadto demonstrate that the dining/activity room couldbe moved to an outside wall at a later date if the Staterequired such a change (201).

Case Example: Room Arrangement

A nursing home with a special care unit wanted toplace the beds in 2-bed resident rooms alongopposite walls to increase residents’ privacy andallow them equal access to the windows and door.State regulations require that each bed must have 3feet of space on either side and 4 feet of space at thefoot. (The reasons for this requirement are: 1) toassure that beds are accessible to residents inwheelchairs; and 2) to assure that beds are accessibleto staff and equipment on all three sides.) Because ofthese State regulations, the beds could not be placedalong the walls and instead had to jut out into theroom. To allow for two beds, each jutting out fromopposite walls with a 4-foot space between their feet,the rooms would have to be wider and shallower thanthe typical nursing home room. This was not aproblem in itself, but wider rooms, one after another,require longer corridors. The NFPA Life SafetyCode requires that nursing home corridors be 8 feetwide. (The reason for this requirement is to assurethat in the event of a fire when, it is assumed,residents will be evacuated on stretchers, the corri-dors will be wide enough to accommodate twostretchers side by side.) Even though the rooms

328-405 - 92 - 7 QL 3

would have the same square footage, each extra footof room width would require 8 additional square feetof corridor space. Because of the cost of the extracorridor space, the facility had to abandon thisinnovation (201).

Case Examples: Keypad-OperatedLocking Systems

One nursing home remodeled a 41-bed unit tocreate a special care unit. After considerable re-search, the staff decided the best locking systemwould be one with a keypad and a 4-number codewhich staff members could use to open the exit doorsbut which the residents probably would not be ableto use. The doors would automatically unlock in caseof fire. The facility received approval for use of thekeypad-operated locking system from the localbuilding inspector, the local fire marshal, and theState official responsible for approving physicalplans for all nursing homes. The system had been inplace for several months when the unit had its firstsurvey. The survey went well, but the next day, asenior official from the State survey agency arrivedto examine the keypad-operated locking system. Hisassessment, expressed in no uncertain terms, wasthat the keypad locking system constituted a lockedunit and was not allowable. Only when the localAlzheimer’s Association chapter intervened did thesurvey agency agree to allow this locking system(201).

In 1991, the Texas Department of Health begandisallowing keypad-operated locking systems inTexas nursing homes and other residential carefacilities (78). This decision was based on aninterpretation of the Life Safety Code which wasapparently endorsed by the Dallas regional office ofthe Health Care Financing Administration, eventhough keypad-operated locking systems are ap-proved for use in other parts of the country and wereallowed previously in Texas.

Case Example: Dutch Doors

A nursing home decided to install clutch doors inits new special care unit. The certificate of needapplication for the unit included a description of theclutch doors, and the additional cost of the doors wasapproved as part of the facility’s Medicaid rate. TheState project engineer approved the clutch doors afterlengthy negotiations, meetings, and correspondencebut required additional latches which could be usedto attach the top and bottom doors. Nevertheless,


when the State surveyors came for the final inspec-tion before the unit opened, they disallowed thedoors on the basis that they constituted ‘restraints. ’The doors continued to be disallowed despite facilityguidelines that described the rationale for the doors,how they would be used to protect resident privacy,and how they fit with the facility’s restraint policy(201).

Case Example: Dietary Practices

The staff of one special care unit wanted to seatsmall groups of special care unit residents togetherat meal times and feed them family style. The staffalso wanted to serve some meals that consisted ofonly two foods because they believed this approachwould reduce resident confusion. They planned tomeet the residents’ additional nutritional require-ments with snacks. These plans were questioned bysurveyors who cited State regulations that require“at least three meals a day that are nutritious andsuited to special needs of patients and residents’ and“trays...large enough to accommodate all of thedishes necessary for a complete meal, arranged andserved attractively” (201).

Case Example: Staffing

Several special unit operators interviewed byOTA’s contractor complained about State regula-tions that require specific types and numbers of staffmembers. One unit operator said, “I am not con-vinced you need separate people to do recreation andnursing. Each person has a piece of the patient. It isnot as holistic as it could be. ’ Other unit operatorspointed out the value of occupational therapy,recreational therapy, and other therapies in the careof residents with dementia. If cost were not adetermining factor, a special care unit could employthe number and types of staff required by theregulations plus additional staff members of theseother types. Given cost constraints, this is usuallynot possible (201).

METHODS TO ALLOWINNOVATION IN THE DESIGNAND OPERATION OF SPECIAL

CARE UNITSAs discussed in the preceding sections, some

Federal, State, and local government regulations andstandards interfere with the use of physical designfeatures, patient care practices, and staffing arrange-

ments that special care unit operators and othersconsider appropriate for the care of residents withdementia. Interpretations of regulations and combi-nations of regulations, cost constraints, and otherfactors also interfere with the use of these features.As a result, potentially effective design features, carepractices, and staffing arrangements cannot beimplemented and evaluated. Several commentatorshave pointed out that despite the diversity of existingspecial care units, all the variation is within thelimited framework of existing regulations (200,273).

One possible approach to allow innovation in thedesign and operation of special care units is toeliminate regulations and standards that are found torestrict innovative physical design and other fea-tures. Although this approach may eventually beappropriate, lack of agreement about the particularfeatures that are necessary in a special care unit andlack of research-based evidence for the effectivenessof particular features make decisions to eliminateexisting regulations and standards premature atpresent.

It is possible some existing regulations andstandards should be eliminated because they areinappropriate for all nursing homes—for example,regulations that were adopted directly from hospitalregulations without regard for the different purposesand clients of hospitals and nursing homes. Some ofthe regulations and standards discussed in thepreceding sections may be in that category, but mostprobably are not.

As noted earlier, fire safety regulations andinterpretations of these regulations are often cited aslimiting the use of innovative physical designfeatures in special care units. The preceding sectionshave noted several innovative design ideas thatcould not be implemented because of fire safetyrequirements of the Life Safety Code. Special careunit operators and others whose ideas could not beimplemented because of these requirements mightargue that the requirements should be eliminated. Onthe other hand, it is OTA’s impression based oninformal discussions with many special care unitoperators and experts in specialized dementia carethat there are few, if any, Life Safety Code require-ments that all these individuals would agree toeliminate. In fact, at a recent meeting of the patientcare and public policy committees of the NationalAlzheimer’s Association, some Alzheimer’s advo-cates argued that fire safety precautions should be

Chapter 6-Regulations That Interfere With The Design and Operation of Special Care Units . 169

increased rather than decreased for special care units(21).

Rather than attempting to eliminate regulationsand standards that interfere with the design andoperation of special care units, an alternate approachto allow innovation is to create a process by whichindividual special care units could obtain waivers toimplement physical design features, patient carepractices, and staffing arrangements they believewill benefit residents with dementia. Such a processwould have to include mechanisms for protectingresidents’ rights in units in which innovative fea-tures were being implemented. The process shouldalso include mechanisms for evaluating the innova-tions.

Most existing regulatory codes, including the LifeSafety Code, have provisions for granting waivers.In at least some States, however, the waivers that aregranted are for relatively trivial changes. A study ofwaivers granted by the Massachusetts Department ofPublic Health between 1985 and 1987 found that 98waivers were granted for physical characteristics ofthe facilities (200). Almost half of these waivers (43percent) were to allow the use of mobile medicinecarts. The remaining waivers were for exemptionsfrom the paper towel requirement (16 percent),changes in tub design (9 percent), number of bathsper resident (9 percent), minor variations in thedimensions of various spaces (7 percent), changes inthe number of residents on a unit (6 percent),furniture specifications (4 percent), and other minormodifications (5 percent). No waivers were grantedfor innovative design features.

The purpose of creating a waiver process forspecial care units would be to allow the implementa-tion and evaluation of nontrivial innovations. Sincesuch innovations would change the care of individu-als with dementia in significant ways, the waiversshould only be granted on a facility-by-facility basisafter careful prior review by a panel of health careprofessionals, Alzheimer’s advocates, industry rep-resentatives, architects, designers, lawyers, survey-ors, fire marshals, and building inspectors. The panelwould have to determine whether a proposed inno-vation was worth evaluating and whether sufficientsafeguards had been built into the proposal to protectresidents of the unit. The panel would also have tomonitor the waivered innovations on an ongoingbasis to assure the safety and well-being of theresidents. Although such panels could be established

at any level of government, they probably would bemost appropriately set up at the State level sinceStates have the dominant role in regulating nursinghomes.

In addition to creating a waiver process for specialcare units, several other approaches could be used toallow innovation in special care units. One approachwould be to encourage government officials, survey-ors, fire marshals, and building inspectors to besupportive of innovations. As noted earlier, theseindividuals tend to be conservative in their interpre-tations of regulations and standards. Training ma-terials and programs could be created to inform themabout nursing home residents with dementia, theneed to develop more appropriate methods of carefor them, and the role of special care units indeveloping those methods of care. A training effortof this kind would be essential for the success of awaiver process for special care units because gov-ernment officials, surveyors, fire marshals, andbuilding inspectors would have to approve thewaivered innovations and cooperate with theirimplementation.

The following approaches could be used to allowand encourage innovation in special care units, aswell

●

●

●

●

as other residential facilities for older people:

The process for obtaining approval for newdesign or other features could be simplified andstreamlined at the State level.

Relevant regulations and standards could becompiled in a clear and easy to use format.

Any new regulations could be written in aformat that includes an explicit statement of thepurpose or desired outcome of each require-ment, thus providing government officials,surveyors, and others with a basis for allowinginnovations that meet the purpose if not theprecise stipulations of the requirement.Inconsistencies in the requirements of differentagencies, regulations, and codes could beidentified and eliminated.

In 1990, the National Institute of Building Sci-ences initiated a project to compare the NFPA LifeSafety Code and the life safety standards in variousmodel building codes in order to identify inconsis-tencies and conflicts. The objective of the project isto provide recommendations to HCFA about the lifesafety requirements for nursing homes that partici-pate in the Medicare and Medicaid programs.


CONCLUSIONProbably the most important objective of special

care units from a societal perspective is to developbetter approaches to care for nursing home residentswith dementia. Some Federal, State, and localgovernment regulations and interpretations of regu-lations interfere with this objective by discouraginginnovation. Although special care units are diverse,all the variation is within the limits of existingregulations.

This chapter has discussed the need for a processby which individual special care units could obtainwaivers to implement innovations they believe willbenefit individuals with dementia. Such a processwould have to involve prior review of waiverrequests by a panel of health care professionals,consumer advocates, surveyors, architects, design-ers, and others. It should also involve mechanismsfor evaluating the innovations and mechanisms forprotecting the rights of residents of units in whichnew approaches to care are being tested. The panelsprobably would function most effectively at theState level, but the Federal Government couldencourage their development through demonstrationgrants.

In addition to the creation of a waiver process forspecial care units, the chapter has discussed severalother methods that could be used to allow andencourage innovation in special care units. Some ofthe methods pertain primarily to special care units,e.g., providing training materials and programs to

inform surveyors, fire marshals, and others aboutproblems in the care of nursing home residents withdementia and the importance of developing alternateapproaches to their care. Other methods pertain to allresidential facilities for older people, e.g., simplify-ing and streamlining the process for obtainingapproval of new design or other features andeliminating conflicts and inconsistencies in therequirements of different agencies, regulations, andcodes.

As described in chapter 5, the current focus ofState efforts with respect to special care units isdeveloping regulations to assure that nursing homesthat claim to provide special care actually providesomething special for their residents. To OTA’sknowledge, no State has created a process forwaiving regulations that interfere with the design oroperation of special care units. A few States haveprovided grants to nursing homes and other facilitiesto create model special care units. In at least one ofthese States, the State’s own regulations made itdifficult or impossible for some of the facilities thatreceived the grants to implement the design or otherfeatures they considered appropriate for individualswith dementia, thus defeating the purpose of thegrants. If special care units are to fulfill the societalobjective of developing better methods of care fornursing home residents with dementia, policies toallow and encourage innovation must receive at leastas much attention as policies to regulate and controlthe units.

Appendixes

Appendix A

Diseases and Conditions That Cause Dementia

Dementia can be caused by more than 70 diseases and conditions, including the following:

● progressive degenerative diseases, including those in which dementia is inevitable, such as Alzheimer’s disease andPick’s disease, and those in which dementia mayor may not occur, such as amyotrophic lateral sclerosis (ALS) andParkinson’s and Huntington’s diseases;

. cardiovascular diseases that decrease blood supply to the brain: this can cause loss of brain tissue in the form of manysmall strokes (multi-infarct dementia) or one or more large strokes; bleeding into the brain, usually related tohypertension, can also cause loss of brain tissue;

● severe depression;

● intoxication caused by prescription and nonprescription drugs and alcohol;

. infections that affect the brain, including Creutzfeldt-Jakob Disease and acquired immune deficiency syndrome{AIDS);

● metabolic disorders;

● nutritional disorders;

. normal pressure hydrocephalus; and

. space-occupying lesions, such as brain tumors and subdural hematoma.

SOURCE: U.S. Department of Health and Human Services, Public Health Service, National Institutes of Health, “Differential Diagnosis of DementingDiseases,” NIH Consensus Development Conference Statement 6(1 1):1-6, Oct. 19-21, 1987.

–173–

Appendix B

Conceptual and Methodological Issues in Researchon Special Care Units

Numerous difficult conceptual and methodologicalissues complicate the process of designing and conduct-ing special care unit research. Table 1-3 in chapter 1 listsmany of these issues. Most of the issues were identifiedand discussed at a 1990 special care unit conferencesponsored by the Alzheimer’s Disease Research Center atWashington University in St. Louis, MO (26). Some ofthe issues are being addressed by subcommittees of theWorkgroup on Research and Evaluation of Special CareUnits, an ad hoc group of researchers formed followingthe St. Louis conference, and by the 10 research teamsfunded through the National Institute on Aging’s “Spe-cial Care Units Initiative. ’ This appendix discusses fiveof the most difficult issues.

Definition of the Term Special Care Unit

One of the most difficult issues in special care unitresearch at this time is the definition of the term specialcare unit. As noted in chapters 1 and 3, most descriptivestudies have used self-report-i. e., the statement of anursing home administrator or special care unit operator—to identify special care units. This method of identifyingspecial care units misses some units, since some nursinghomes that place residents with dementia in a separateunit and provide special services for them-an arrange-ment that most researchers would regard as a special careunit-do not use the term special care for this arrange-ment. Such nursing homes may not respond affirmativelyto a question about whether they have a special care unit(436).

On the other hand, using self-report to identify specialcare units includes some units and other care arrange-ments that perhaps should not be included. A fewresearchers have used additional criteria to determinewhich units should be included in their samples (see, forexample, Sloane et al [413]). By doing so, they necessar-ily focus on a subset of all facilities that might beconsidered special care units and thereby eliminate someof the diversity that characterizes the full universe ofunits.

For some purposes, the use of criteria that limit thedefinition of special care unit is appropriate. For mostpublic policy purposes, however, the definition of specialcare unit should be inclusive rather than exclusive at thisearly stage in special care unit research. In this context, itis important to note that the first information about thelarge number of cluster units in some States came from astudy that did not use the term special care unit at all andinstead asked abroad question about ‘living arrangements

available for cognitively impaired (demented) residents’(177).

Individual Variation in Symptom Progression inDementia

A second issue that has received considerable attentionin the general literature on Alzheimer’s disease anddementia but relatively little attention in the special careunit literature is the variation in symptom progression indiseases that cause dementia. Although cognitive abilitiesdecline over time in Alzheimer’s disease, the rate ofdecline varies greatly indifferent individuals (25,37,57,145,228,338,479). Some individuals with Alzheimer’s dis-ease show no decline, and a few show improvement intheir cognitive abilities over l-year to 2-year followupperiods (145,338). Most studies have found no character-istics of an individual (e.g., age, age of onset, duration ofillness, family history of dementia, or entry point testscores) that predict the rate at which the individual’scognitive abilities will decline. Moreover, particularcognitive abilities decline at different rates (37,368).

The rate of decline in ability to perform activities ofdaily living also varies in different individuals and fordifferent activities (127,145,235,338). A pilot study of 54nursing home residents with dementia found that 6months after their admission to the facility, 46 percent ofthose who survived showed no change in their ability toperform activities of daily living; 29 percent showed adecline in only one activity of daily living; and 24 percentshowed a decline in more than one activity of daily living(62). The progression of behavioral symptoms also variesin different individuals and for different symptoms(127,235,394,441).

This variation in symptom progression means that fora given individual, it is difficult to determine whetherchanges or lack of changes in his or her symptoms overtime reflect the course of the individual’s disease or theeffects of a treatment intervention (e.g., placement in aspecial care unit). In a study with a long duration and alarge sample, individual variation in symptom progres-sion might have a negligible effect on the study’sfindings. Subject attrition is high in special care unitresearch, however. Some special care unit studies havelost one-third or more of their subjects in a year (80,265).As a result, it is difficult to maintain a large sample for along period of time. In a study with a small sample,individual variation in symptom progression could easilyobscure the effects of the treatment intervention.

–174-

Appendix B-Conceptual and Methodological Issues in Research on Special Care Units . 175

Lack of Validated Measurement Instruments

A third issue in special care unit research is the lack ofvalidated instruments to measure many of the potentiallyimportant characteristics of the units, the residents, theirfamilies, and the unit staff members. As noted in table 1-3in chapter 1, many of the available instruments exhibitceiling or floor effects that obscure the full range ofpositive or negative changes in resident and familycharacteristics (57,1 13,145,228,265).

Measuring subjective variables in individuals withdementia is particularly difficult (244,272). Severalinnovative instruments and methods have been proposedto measure feelings, comfort, and degree of satisfaction(197,271,442), but this remains a formidable problem forspecial care unit researchers.

Some special care unit studies have used staginginstruments to classify their subjects. These instrumentsdefine stages of dementia or Alzheimer’s disease based ona combination of cognitive impairments, mood, func-tional impairments, and behavioral symptoms (see, forexample, Reisberg et al. [372]). Staging instruments areuseful for many purposes, but they tend to maskindividual variation in symptom patterns and progression(53,127). Many studies have found only modest correla-tions between the cognitive impairments caused by anindividual’s dementing disease and either the individual’sabil i ty to perform act ivi t ies of dai ly l iving(43,124,344,369,410,472,508) or the individual’s behav-ioral symptoms (111,394,431,441). Moreover, manydementia experts expect special care units to affect thesedomains differently: few experts expect the units toreduce residents’ cognitive impairments, for example, butmany experts expect the units to reduce residents’behavioral symptoms. Staging instruments that combinethese domains are likely to obscure any effect of thespecial care units. For this reason, staging instrumentsprobably should not be used to classify subjects in thisresearch, especially in studies with small samples.

Accuracy of Proxy Responses

A fourth issue in special care unit research is theaccuracy of proxy-derived responses. Because of thecognitive impairments of nursing home residents withdementia, researchers sometimes must rely on proxyrespondents-usually family members or friends of theresident—to provide information about the residents.

Little is known about the accuracy of these responses(278). One study of 53 nursing home residents who werenot severely cognitively impaired found that proxyresponses were more likely to match the residents’responses on questions about readily observable andlong-lasting conditions and less likely to match theirresponses on questions about subjective or temporaryconditions (280). Another study of 152 nursing homeresidents who were not severely cognitively impairedfound that proxy responses with respect to the residents’satisfaction with specific aspects of their nursing homecare were no more likely to match the residents’ responsesthan would be expected by chance (239). The researchersconcluded that the ability of family members and friendsto represent residents’ satisfaction with nursing homeservices is limited and inconsistent.

Number and Complexity of Variables

A final issue is the sheer number and complexity of thevariables in special care unit research. As noted in table1-3 in chapter 1, it is difficult to determine which of themany characteristics of the units, the residents, theirfamilies, and the unit staff members are important tostudy. The experimental variable, the special care unit, ismultidimensional. As Lawton has noted:

The experimental variable (is) not a redecoratedward or a new building, but an entire systemcomposed of countless physical and staff changes,sometimes a new resident mix, different treatmentprograms, and not least, changed expectations bystaff, residents, and administrators (241).

Some people argue that it is the milieu of a special careunit rather than any of its particular characteristics thatconstitutes the experimental variable. Their contentionmay be valid, but defining the concept milieu has causeddifficulties in research on inpatient psychiatric care for 30years and is unlikely to be any easier in special care unitresearch (436).

The number and complexity of the variables in specialcare unit research and the many other conceptual andmethodological issues discussed above and listed in table1-3 contribute to the difficulty of designing and conduct-ing special care unit research. These factors account, atleast in part, for the current lack of definitive answersabout the effectiveness of special care units.

Appendix C

Acknowledgements

OTA is grateful for the assistance of the contractors and many other individuals and organizations that contributed tothis report. In addition, OTA thanks the following individuals who reviewed the report.

Debby BeitlerAlzheimer’s AssociationChicago, IL

Leonard BergWashington University School of MedicineSt. Louis, MO

Shawn M. BloomAmerican Association of Homes for

the AgingWashington, DC

Betsy BrawleyDesign Concepts UnlimitedSausalito, CA

Kathleen C. BuckwalterUniversity of Iowa College of NursingIowa City, IA

Sarah BurgerNational Citizens Coalition for Nursing

Home ReformWashington, DC

Margaret P. CalkinsInnovative Designs in Environments for an

Aging SocietyMilwaukee, WI

Paul K. ChafetzUniversity of Texas Southwestern

Medical CenterDallas, TX

Uriel CohenUniversity of Wisconsin/MilwaukeeMilwaukee, WI

Susan CooleyU.S. Department of Veterans AffairsWashington, DC

Dorothy H. CoonsUniversity of MichiganAnn Arbor, MI

Michael S. FranchMaryland Department of Health and

Mental HygieneBaltimore, MD

Rickey R. GreeneNew Jersey Department of HealthTrenton, NJ

Lisa P. GwytherDuke University Medical CenterDurham, NC

Catherine HawesResearch Triangle InstituteResearch Triangle Park, NC

Douglas HolmesHebrew Home for Aged at Riverdale ‘Riverdale, NY

Joan HydeUniversity of MassachusettsBoston, MA

Rosalie A. KaneUniversity of MinnesotaMinneapolis, MN

Bill KeaneSt. Lawrence Rehabilitation CenterNewtown, PA

Tom KirkAlzheimer’s AssociationChicago, IL

Kathleen Mann KoepkeWashington University School of MedicineSt. Louis, MO

M. Powell LawtonPhiladelphia Geriatric CenterPhiladelphia, PA

Joel LeonGeorge Washington University Medical CenterWashington, DC

David A. LindemanNorthern California Alzheimer’s

Disease CenterBerkeley, CA

Nancy L. MacePacific Presbyterian Medical CenterSan Francisco, CA

–176-


Jay Magaziner Philip D. SloaneUniversity of Maryland at Baltimore University of North Carolina at Chapel HillBaltimore, MD Chapel Hill, NC

Rhonda MontgomeryWayne State UniversityDetroit, MI

Nancy Orr-RaineyHillhaven CorporationTakoma, WA

Marcia OryNational Institute on AgingBethesda, MD

Peter V. RabinsJohns Hopkins University School of MedicineBaltimore, MD

Joanne RaderBenedictine InstituteMount Angel, OR

Marcia RichardsAmerican Health Care AssociationWashington, DC

Cheryl RiskinLeVine Institute on AgingDetroit, MI

Anne RobinsonAlzheimer’s Care and Training CenterAnn Arbor, MI

Mary Tellis-NayakJoint Commission on Accreditation of

Healthcare OrganizationsChicago, IL

Jeanne A. TeresiHebrew Home for the Aged at RiverdaleRiverdale, NY

Ramon VaneSan Diego State UniversitySan Diego, CA

Ladislav VolicerE.N. Rogers Memorial Veterans HospitalBedford, MA

Peter WhitehouseUniversity Hospitals of ClevelandCleveland, OH

Barry W. RovnerJefferson Medical CollegePhiladelphia, PA

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