The Effect of Home Monitoring The Effect of Home Monitoring Technology on Reducing Burden in Technology on Reducing Burden in

Caregivers of Older Adults with Caregivers of Older Adults with DisabilitiesDisabilities

Linda Russ, OTR, PhDLinda Russ, OTR, PhDDepartment of Rehabilitation Science

University at Buffalo

Presented atThe NYSOTA Conference

Buffalo, NYSeptember 27-29, 2007

IntroductionIntroduction

According to the Special Committee on According to the Special Committee on Aging (2001): Aging (2001): As many as 52 million Americans are informal As many as 52 million Americans are informal

caregivers.caregivers. Nearly three-quarters of informal caregivers Nearly three-quarters of informal caregivers

are women, most typically married women in are women, most typically married women in her mid-40s to mid-50s employed full-time.her mid-40s to mid-50s employed full-time.

Population trends forecast an increase in Population trends forecast an increase in informal caregiving needs.informal caregiving needs.

IntroductionIntroduction

Assistive device use and environmental Assistive device use and environmental interventions can be effective in reducing interventions can be effective in reducing home care costs and in maintaining home care costs and in maintaining independence in frail elders.independence in frail elders. (Mann, Ottenbacher, Fraas, Tomita, & Granger, 1999).(Mann, Ottenbacher, Fraas, Tomita, & Granger, 1999).

Electronic technologies have been shown to Electronic technologies have been shown to be effective in reducing caregiver burden be effective in reducing caregiver burden (Kart, Kinney, Murdoch, & Ziemba, 2002).(Kart, Kinney, Murdoch, & Ziemba, 2002).

Identifying CaregiversIdentifying Caregivers

Caregivers provide support to someone Caregivers provide support to someone who needs help.  who needs help.  It doesn’t matter how many hours per week It doesn’t matter how many hours per week

are spent providing support.  are spent providing support.  Caregivers may live with the person they are Caregivers may live with the person they are

caring for, providing assistance with daily caring for, providing assistance with daily needs, or may visit the person weekly or call needs, or may visit the person weekly or call regularly.  regularly. 

Being a caregiver involves an investment Being a caregiver involves an investment in time, energy and support.in time, energy and support.

Definitions: Informal Caregiving, Caregiver Definitions: Informal Caregiving, Caregiver Burden, Caregiver BurnoutBurden, Caregiver Burnout

Informal or lay caregivingInformal or lay caregiving The act of providing assistance to an individual with The act of providing assistance to an individual with

whom the caregiver has a personal relationship. whom the caregiver has a personal relationship. Caregiver Caregiver burden burden (Kasuya, Polgar-Bailey, & Takeuchi, 2000)(Kasuya, Polgar-Bailey, & Takeuchi, 2000)

Defined as the strain or load borne by a person who Defined as the strain or load borne by a person who cares for an elderly, chronically ill, or disabled family cares for an elderly, chronically ill, or disabled family member or other person.member or other person. It is a multidimensional response to physical, psychological, It is a multidimensional response to physical, psychological,

emotional, social, and financial stressors associated with the emotional, social, and financial stressors associated with the caregiving experience. caregiving experience.

The caregiver's perception of the burden, rather than The caregiver's perception of the burden, rather than the perception of other family members or healthcare the perception of other family members or healthcare providers, determines the impact on his or her life. providers, determines the impact on his or her life.

Definitions: Caregiver BurnoutDefinitions: Caregiver Burnout

Caregiver Caregiver burnoutburnout The progression of caregiver burden to the The progression of caregiver burden to the

point where the experience is no longer a point where the experience is no longer a viable or healthy option for either the viable or healthy option for either the caregiver or the person receiving care. caregiver or the person receiving care.

Goal of Health Care ProvidersGoal of Health Care Providers Lessen the demands of caregiving, prevent Lessen the demands of caregiving, prevent

caregiver burdencaregiver burden If not possible prevent progression to burnoutIf not possible prevent progression to burnout

Prevalence of caregiver burden and Prevalence of caregiver burden and burnoutburnout

The prevalence of caregiver burden has The prevalence of caregiver burden has been described in multiple surveys. been described in multiple surveys.

Results of a 1992 study by the Carers Results of a 1992 study by the Carers National Association indicated that:National Association indicated that: One of every two caregivers had financial One of every two caregivers had financial

burdens burdens Two of every three were in ill health Two of every three were in ill health

themselves themselves

Effects of CaregivingEffects of Caregiving

Home care of chronically ill persons has received Home care of chronically ill persons has received considerable attention in recent years. considerable attention in recent years. However, difficulties experienced by caregivers often are However, difficulties experienced by caregivers often are

considered only after the signs of burnout are apparent. considered only after the signs of burnout are apparent.

Family members and other providers often accept Family members and other providers often accept responsibility for the care of those with chronic health responsibility for the care of those with chronic health needs. needs. Typically, they do this for emotional and economic reasons, not Typically, they do this for emotional and economic reasons, not

because they are proficient at, or feel comfortable with, the type because they are proficient at, or feel comfortable with, the type of care required. of care required.

They frequently expect or are expected to assume the They frequently expect or are expected to assume the role of caregiver without regard for the possible role of caregiver without regard for the possible emotional, physical, and financial consequences. emotional, physical, and financial consequences.

BackgroundBackground

Caregiving has both negative and positive Caregiving has both negative and positive impacts.impacts.

Caregivers who perceive the positive rewards Caregivers who perceive the positive rewards will be less likely to suffer the negative effects will be less likely to suffer the negative effects on health and financial resources, while on health and financial resources, while maintain family satisfaction (Carruth, Tate, maintain family satisfaction (Carruth, Tate, Moffett, & Hill, 1997).Moffett, & Hill, 1997).

Interventions should include the positive Interventions should include the positive aspects of caregiving to be most effective.aspects of caregiving to be most effective.

Lazarus’ Stress-Appraisal-Coping Lazarus’ Stress-Appraisal-Coping ModelModel

Useful in understanding caregiver burden Useful in understanding caregiver burden (Lazarus & Folkman, 1984).(Lazarus & Folkman, 1984). Psychological stress occurs when demands Psychological stress occurs when demands

or conflicts exceed resources.or conflicts exceed resources. Reaction to stress subject to individual’s Reaction to stress subject to individual’s

“cognitive appraisal”.“cognitive appraisal”. Includes both primary and secondary forms of Includes both primary and secondary forms of

appraisal.appraisal. Reappraisal is a continual process, can Reappraisal is a continual process, can

determine the caregiver’s sense of mastery.determine the caregiver’s sense of mastery.

Smart HomeSmart Home ““Wireless Caregiving” (Coughlin, 1999).Wireless Caregiving” (Coughlin, 1999).

Allows communication and health monitoring from a Allows communication and health monitoring from a distance, frees caregiver to partake in other activities.distance, frees caregiver to partake in other activities.

Could prolong the ability of older adults to live at Could prolong the ability of older adults to live at home and avoid institutionalization.home and avoid institutionalization.

Includes the Personal Assistance Security Includes the Personal Assistance Security System (PASS).System (PASS). Personal assistance security systems can Personal assistance security systems can

notify a caregiver if a fall has occurred.notify a caregiver if a fall has occurred. The ability of the elder to notify the caregiver in The ability of the elder to notify the caregiver in

times of distress can reduce worry and stress for both times of distress can reduce worry and stress for both parties.parties.

Literature Review: SummaryLiterature Review: Summary

Rationale for intervention based on the Rationale for intervention based on the Stress-Appraisal-Coping model, Stress-Appraisal-Coping model, caregiving, assistive technology, and caregiving, assistive technology, and home modification literature.home modification literature.

Based on the literature, it is predicted Based on the literature, it is predicted that:that: Use of the PASS by frail elders will assist Use of the PASS by frail elders will assist

the caregiver in:the caregiver in: Feeling mastery or control over the situation.Feeling mastery or control over the situation. Enhancing social support.Enhancing social support.

Research QuestionsResearch Questions

1.1. Will the treatment group (care recipients who Will the treatment group (care recipients who have a PASS) maintain their status while the have a PASS) maintain their status while the control group will decline?control group will decline?

2.2. Will e-mail users for caregiving purposes Will e-mail users for caregiving purposes maintain their status level while e-mail maintain their status level while e-mail nonusers will decline?nonusers will decline?

3.3. Will the combination of the PASS with e-mail Will the combination of the PASS with e-mail benefit users the most? benefit users the most?

4.4. Which segment of caregivers will benefit most? Which segment of caregivers will benefit most?

5.5. What is the subjective evaluation of PASS and What is the subjective evaluation of PASS and e-mail use for caregiving?e-mail use for caregiving?

Methods: Study DesignMethods: Study Design

The Smart Home: Technology and Aging Project The Smart Home: Technology and Aging Project at UB.at UB. 45 older adults living alone have had computers with 45 older adults living alone have had computers with

Internet access and X10 Active Home installed and Internet access and X10 Active Home installed and have had previous training.have had previous training.

Final portion of Smart Home: Installation of the Final portion of Smart Home: Installation of the X10 Powerhouse (PASS).X10 Powerhouse (PASS). personal assistance security console along with the personal assistance security console along with the

wireless call pendant.wireless call pendant.

Methods: Research DesignMethods: Research Design

InitialInitial 6 Months6 Months 12 Months12 Months

TREATMENTTREATMENT

E-mail useE-mail use OO XX O O X X O O

Non e-mail useNon e-mail use O XO X O O X O X O

CONTROL CONTROL

E-mail useE-mail use OO O O O O

Non e-mail useNon e-mail use O O OO O O

O = QuestionnaireO = Questionnaire

X = PASSX = PASS

SamplingSampling

Convenience samplingConvenience sampling Smart Home participants identified Smart Home participants identified

potential caregiver participants potential caregiver participants Primary informal caregiver identified by Primary informal caregiver identified by

SH elder. SH elder.

Study SampleStudy Sample

InitialInitial AgreedAgreed 6 Mo. 6 Mo. 12 Mo.12 Mo.

TT

CC

45 37

67

3135

24 1922

Caregiver CharacteristicsCaregiver Characteristics Age: M = 56.8 (SD = 14.15)Age: M = 56.8 (SD = 14.15) Females: n = 37 (74%); Males: n = 3 (26 %)Females: n = 37 (74%); Males: n = 3 (26 %) Race: Minority, n = 10 (20%), Caucasian, n = 40 Race: Minority, n = 10 (20%), Caucasian, n = 40

(80%)(80%) Marital Status: Married, n = 26 (52%); Unmarried, n = Marital Status: Married, n = 26 (52%); Unmarried, n =

24 (48%)24 (48%) Relationship to CR: Offspring, n = 20 (40%); Relationship to CR: Offspring, n = 20 (40%);

Friend/neighbor, n = 30 (60%)Friend/neighbor, n = 30 (60%) Homeownership: Yes, n = 38 (76%), No, n = 12 Homeownership: Yes, n = 38 (76%), No, n = 12

(24%)(24%) Education: High School, n = 20 (40 %), Post Education: High School, n = 20 (40 %), Post

secondary, n = 30 (60%)secondary, n = 30 (60%) Income: $0-$20K, n = 13 (26%), $20K +, n = 37, Income: $0-$20K, n = 13 (26%), $20K +, n = 37,

(74%)(74%) Employed: Yes, n = 25 (50%), No, n = 25 (50%)Employed: Yes, n = 25 (50%), No, n = 25 (50%)

Care Recipient CharacteristicsCare Recipient Characteristics

Age: M = 74.2 (SD = 7.43)Age: M = 74.2 (SD = 7.43) Females: n = 45 (90%); Males: n = 5 (10 %)Females: n = 45 (90%); Males: n = 5 (10 %) Race: Minority, n = 10 (20%), Caucasian, n = Race: Minority, n = 10 (20%), Caucasian, n =

40 (80%)40 (80%) Homeownership: Yes, n = 30 (60%), No, n = Homeownership: Yes, n = 30 (60%), No, n =

20 (40%)20 (40%) Education: Primary and secondary, n = 18 (36 Education: Primary and secondary, n = 18 (36

%), Post secondary, n = 32 (64%)%), Post secondary, n = 32 (64%) Income: $0-$20K, n = 28 (56%), $20K +, n = Income: $0-$20K, n = 28 (56%), $20K +, n =

22, (44%)22, (44%)

Study Sample: PASS and E-mail Group Study Sample: PASS and E-mail Group AssignmentsAssignments

All ParticipantsN = 50

PASSn = 31

No PASSn = 19

PASS and e-mailn = 12

PASS, no e-mail

n = 19

No PASS, e-mailn = 2

No PASS, no e-mailn = 17

InterventionIntervention

Installation and training in the use of Installation and training in the use of the PASS was provided to Smart House the PASS was provided to Smart House participants and caregivers.participants and caregivers. Intervention group allowed to keep system Intervention group allowed to keep system

at study’s conclusion.at study’s conclusion.

Installation.Installation. 1 day installation, 3 1-hour training sessions or 1 day installation, 3 1-hour training sessions or

more as needed to care recipients and caregivers.more as needed to care recipients and caregivers. Ongoing technical support via principal Ongoing technical support via principal

investigator, project staff.investigator, project staff.

Psychosocial outcome measuresPsychosocial outcome measures

Zarit Burden Interview (ZBI).Zarit Burden Interview (ZBI). 29 item self-report inventory of burden.29 item self-report inventory of burden.

Center for Epidemiological Studies Center for Epidemiological Studies Depression (CES-D) Inventory.Depression (CES-D) Inventory. Measures depression experienced in the Measures depression experienced in the

past week.past week. Picot Caregiver Rewards Scale.Picot Caregiver Rewards Scale.

Measures positive feelings and outcomes Measures positive feelings and outcomes related to the caregiving experience.related to the caregiving experience.

RESULTSRESULTS

No statistical differences were noted between No statistical differences were noted between the treatment (n =31) and control (n = 19) the treatment (n =31) and control (n = 19) caregiver groups at initial assessmentcaregiver groups at initial assessment

Care recipient age (Treatment, M = 72.10, SD = Care recipient age (Treatment, M = 72.10, SD = 6.00; Control, M = 77.74, SD = 8.34; t = 2.78, p 6.00; Control, M = 77.74, SD = 8.34; t = 2.78, p = .008) and race (Treatment, Minority = 25%, = .008) and race (Treatment, Minority = 25%, Control, Minority = 5.3%; X2 = 3.554, p = .030) Control, Minority = 5.3%; X2 = 3.554, p = .030) were significantly different.were significantly different.

RQ1: Effect of PASS Intervention on RQ1: Effect of PASS Intervention on DepressionDepression

4

6

8

10

12

Initial 12 months

Control

Treatment

RQ1: Effect of PASS Intervention on RQ1: Effect of PASS Intervention on Caregiver BurdenCaregiver Burden

16

16.5

17

17.5

18

18.5

19

19.5

20

Initial 12 Month

Control

Treatment

RQ1: Effect of PASS InterventionRQ1: Effect of PASS Intervention on on Caregiver SatisfactionCaregiver Satisfaction

20

30

40

50

60

Initial 12 Month

Control

Treatment

RQ2: Effect of E-mail on DepressionRQ2: Effect of E-mail on Depression

5

6

7

8

9

10

11

12

Initial 12 Month

E-mail users

Non e-mail users

RQ2: E-mail on Caregiver BurdenRQ2: E-mail on Caregiver Burden

15

16

17

18

19

20

Initial 12 Month

E-mail users

Non e-mail users

RQ2: E-mail on Caregiving RQ2: E-mail on Caregiving SatisfactionSatisfaction

30

35

40

45

50

Initial 12 Month

E-mail users

Non e-mail users

Research Question 3Research Question 3

Will the combination of the PASS with e-Will the combination of the PASS with e-mail use benefit caregivers the most? mail use benefit caregivers the most?

RQ3: Effect of PASS and E-mail on RQ3: Effect of PASS and E-mail on DepressionDepression

6

7

8

9

10

11

12

Initial 12 Month

PASS and e-mail

PASS and no e-mail

No PASS and no e-mail

RQ3: Effect of PASS and E-mail on RQ3: Effect of PASS and E-mail on Caregiver BurdenCaregiver Burden

16

17

18

19

20

Initial 12 Month

PASS and e-mail

PASS and no e-mail

No PASS and no e-mail

RQ3:Effect of PASS and E-mail on RQ3:Effect of PASS and E-mail on Caregiver SatisfactionCaregiver Satisfaction

30

35

40

45

50

55

Initial 12 Month

PASS and e-mail

PASS and no e-mail

No PASS and no e-mail

RQ4: Which segment of caregivers RQ4: Which segment of caregivers will benefit most?will benefit most?

DepressionDepression Non e-mail users increased in depression. Non e-mail users increased in depression. Caregivers who did not use the PASS or e-mail had the worst Caregivers who did not use the PASS or e-mail had the worst

outcome. outcome. BurdenBurden

Caucasian caregivers who provided fewer than 3 hours of care Caucasian caregivers who provided fewer than 3 hours of care per week who used e-mail had a decrease in burden. per week who used e-mail had a decrease in burden.

Burden declined even further in those individuals who were Burden declined even further in those individuals who were employed out of this group employed out of this group

Caregiving SatisfactionCaregiving Satisfaction Results showed that the PASS made a difference in caregiving Results showed that the PASS made a difference in caregiving

satisfaction for Caucasian participants.satisfaction for Caucasian participants. The use of PASS could maintain these users caregiving The use of PASS could maintain these users caregiving

satisfaction.satisfaction.

RQ5: Caregiver and Care Recipient RQ5: Caregiver and Care Recipient Subjective EvaluationSubjective Evaluation

CaregiversCaregivers 100% of the caregivers (n = 31) evaluated the PASS positively.100% of the caregivers (n = 31) evaluated the PASS positively. 94% (n =47) reported they would worry less about the care 94% (n =47) reported they would worry less about the care

recipient’s living alone following installation of the PASS recipient’s living alone following installation of the PASS Positive responses re: e-mail from 100% of users (n = 14). Used Positive responses re: e-mail from 100% of users (n = 14). Used

most frequently to keep in touch (pictures, humorous items).most frequently to keep in touch (pictures, humorous items).

Care recipientsCare recipients 83.9% (n = 26) reported feeling safer in the home after installation of 83.9% (n = 26) reported feeling safer in the home after installation of

the PASS. the PASS. 82.4% (n = 25) reported that e-mail is very important in their lives . 82.4% (n = 25) reported that e-mail is very important in their lives .

Discussion: EffectivenessDiscussion: Effectiveness

The combination of PASS and e-mail use The combination of PASS and e-mail use is the most effective way to prevent a is the most effective way to prevent a significant increase in caregiver significant increase in caregiver depression and burden. depression and burden.

Technology interventions (PASS and e-Technology interventions (PASS and e-mail) appear to have no impact on mail) appear to have no impact on caregiving satisfaction. caregiving satisfaction.

Discussion: Minority Caregivers Discussion: Minority Caregivers

Caregiving satisfaction declined among all Caregiving satisfaction declined among all participants, especially among minority participants, especially among minority caregivers. caregivers.

The decrease in burden among minority The decrease in burden among minority caregivers is significantly different from caregivers is significantly different from Caucasians.Caucasians. The technology did not have an impact on these The technology did not have an impact on these

participants.participants. There appears to be another factor(s) affecting this There appears to be another factor(s) affecting this

group.group.

Discussion: Targeting the InterventionDiscussion: Targeting the Intervention

The benefits of the PASS can be maximized by targeting The benefits of the PASS can be maximized by targeting specific caregivers. Two specific segments were specific caregivers. Two specific segments were identified:identified: Caregivers with an income of at least 20K, healthy, and Caregivers with an income of at least 20K, healthy, and

employed. employed. Caregivers who are Caucasian, provide care less than 3 hours, Caregivers who are Caucasian, provide care less than 3 hours,

and not employed, but would like to spend more time helping the and not employed, but would like to spend more time helping the care recipient. care recipient.

The benefits of e-mail is maximized by targeting specific The benefits of e-mail is maximized by targeting specific caregivers.caregivers. Income of at least 20K. Income of at least 20K. Caregivers who are Caucasian, and provide care less than 3 Caregivers who are Caucasian, and provide care less than 3

hours.hours.

Clinical ImplicationsClinical Implications

Practical and low cost technology, such as Practical and low cost technology, such as e-mail and PASS has a positive impact for e-mail and PASS has a positive impact for certain caregivers. Use of these certain caregivers. Use of these technologies should be encouraged to technologies should be encouraged to enhance the well-being of caregivers. enhance the well-being of caregivers.

Technology interventions combined with Technology interventions combined with counseling appear to be especially counseling appear to be especially effective in reducing caregiver depression effective in reducing caregiver depression (Eisdorfer, et al., 2003)(Eisdorfer, et al., 2003)