EVIDENCE-BASED INTERVENTIONS IN PERSON-CENTERED CARE
A. LYNN SNOW, PHDASSOCIATE PROFESSOR,UNIVERSITY OF ALABAMA CENTER FOR MENTAL HEALTH AND AGING & DEPT. OF PSYCHOLOGY; CLINICAL RESEARCH PSYCHOLOGIST,TUSCALOOSA VA MEDICAL CENTER
• No conflicts of interest• Opinions are not that of VAMC or UA
What is Person-Centered Care? “Person-centered care is an approach
to care that respects and values the uniqueness of the individual, and seeks to maintain, even restore, the personhood of individuals. We do this by creating an environment that promotes personal worth and uniqueness, social confidence, respect, truthfulness, independence, engagement and hope.”
--Luther Manor Adult Day Center, Wauwatosa, WI Barsness, S. Person-centered Care and Aging in Place. Retrieved from http://
www.slideshare.net/wef/personcentered-care.
Person-Centered Care….
Empowers the Individual Honors the
Uniqueness of Each Individual
Fosters Optimal Living for Each Individual
Supports Each
Individual in Functioning
at their Highest Possible Level of Ability
Core Values Are:ChoiceDignityRespectPurposeful Living
Is Centered Around the Person and their Needs and Preferences
Rather than the System Providing the Care
What is Culture Change? Term used to refer to an International
Movement to Transform the Culture of Care for Older Adults
Based on Person-Centered Values and Practices
“Culture” refers to the organizational or workplace culture, not one’s ethnicity, race, or heritage (although understanding and respecting
each person’s heritage and background is an important part of knowing and honoring them as individuals)
• Barsness, S. Person-centered Care and Aging in Place: http://www.slideshare.net/wef/personcentered-care• Pioneer Network FAQs: http://www.pioneernetwork.net/Consumers/InformTransformInspire/
“The shift from the old culture to the new is not about just adding on a few items that were missing but of seeing almost every feature in a different way.”
--Thomas Kitwood, Dementia Reconsidered
Barsness, S. Person-centered Care and Aging in Place. Retrieved from http://www.slideshare.net/wef/personcentered-care.
Vision of the Pioneer Network A Culture of Aging that is Life
Affirming, Satisfying, Humane, and Meaningful
Pioneer Network: http://www.pioneernetwork.net/AboutUs/Values/
Ageism
“In our society the only good person is one who looks and acts like a young person”
--Bill Thomas, Founder of Eden Alternative
Ageism… and Dementia-ism
“ism”…Defined as Bias or Prejudice Toward Individuals Because of Their… Age Diagnosis
Rooted in Fears of Vulnerability and Mortality
Fear of Dependency Us vs. Them Perception Denial: Turning Away Due to Wish to
Make Feared Concept Go Away
Values of the Pioneer Network Know Each Person Each Person Can and Does Make a
Difference Relationship is the Fundamental
Building Block of a Transformed Culture
Respond to the Spirit as well as the Mind and Body
Community is the Antidote to Institutionalization
Promote the Growth and Development of All
Pioneer Network: http://www.pioneernetwork.net/AboutUs/Values/
Values of the Pioneer Network All Elders are Entitled to Self-
Determination Wherever They Live Risk Taking is a Normal Part of Life Put Person Before Task Do Unto Others as You Would Have
Them Do Unto You Shape and Use the Potential of the
Environment in All its Aspects: Physical, Organizational, Psycho/social/spiritual
Pioneer Network: http://www.pioneernetwork.net/AboutUs/Values/
Values of the Pioneer Network Practice Self-Examination, Searching
for New Creativity, and Opportunities to Do Better
Recognize that Culture Change and Transformation are not Destinations but a Journey, Always a Work in Progress
Pioneer Network: http://www.pioneernetwork.net/AboutUs/Values/
The Battle for Person-Centered Care:
In the Trenches withNoncognitive Behavioral and Neuropsychiatric Disturbances (NBND)
NBND ARE ALMOST UBIQUITOUS TO DEMENTIA
High prevalence of NBND in persons with dementia1
25-40% mild dementia 25-80% severe dementia 90% prevalence over lifetime of person
with dementia
1Rabins PV, Lyketsos CG, Steele CD. Practical Dementia Care, 2nd Edition. NY, NY: Oxford University Press; 2006:6-7.
NBND HAVE SIGNIFICANT CONSEQUENCES2,3,4
Staff Caregiver Burnout Staff Caregiver Turnover Staff Caregiver Morbidity Nursing Home Placement of Persons
with Dementia Cost
2Lyketsos CG, Baker L, Warren A, et al. Major and minor depression in Alzheimer’s disease: prevalence and impact. J Neuropsychiatry Clin Neurosci. 1007;9:556-561.3Stern Y, Tang MX, Albert MS, et al. Predicting time to nursing home care and death in individuals with Alzheimer’s disease. JAMA. 1997;277:806-812.4Yaffe K, Fox P, Newcomer R, et al. Patient and caregiver charateristics and nursing home placement in patients with dementia. JAMA. 2002;287:2090-2097.
Noncognitive Behavioral and Neuropsychiatric Disturbances (NBND)
Neuropsychiatric Symptoms Affective Cluster Psychotic Cluster
Challenging Behaviors Disturbances in Drives
NBND: Neuropsychiatric SymptomsAffective Cluster Psychotic Cluster Anxiety Irritability Euphoria Labile Panic Apathy Anhedonia Depression Suicidality
Delusions Suspiciousness Paranoia Hallucinations Illusions
NBND: Challenging Behaviors Physically aggressive, Verbally aggressive Repetitive vocalizations (screaming, crying, moaning,
repetitive questions or statements) Pacing and Other Repetitive Movements Wandering (into inappropriate areas/getting lost) Rummaging Hoarding Social withdrawal Uncooperativeness with care Demanding Outbursts Intrusive Catastrophic Reactions Urinating in inappropriate areas
NBND: Disturbances in Drives Hypersexual Sexual aggression Poor sleep Sleeps a lot Out of bed at night Poor appetite Weight loss Excessive appetite “Sundowning”
NBND and Cost5
NBND Incremental cost was $30 per month per point of a one point increase in Neuropsychiatric Inventory score (95% CI: $19-$41).
Total cost also associated with increased age, male gender, increased dementia severity, and vascular dementia as compared to AD
5Hermann et al. Int J Geriatr Psychiatry, 2006; 21:972-976.
Nonpharmacologic Approaches to Preventing and Responding to NBND are First Line Treatments Practice guidelines recommend
always trying nonpharmacologic interventions before pharmacologic treatments
Evidence has accrued regarding adverse effects of atypical antipsychotic drugs in older people (FDA black box warning)6-8, and lack of effectiveness for treating agitation9
References for Previous Slide
6Schneider LS, Dagerman KS, Insel P. Risk of death with atypical antipsychotic drug treatment for dementia: meta-analysis of randomized placebo-controlled trials. JAMA. 2005;294:1934-1943.7Wang PS, Schneeweiss S, Avorn J, et al. Risk of death in elderly users of conventional vs. atypical antipsychotic medications. N Engl J Med. 2005;353:2335-2341.8US Food and Drug Administration Public Health Advisory. Death with antipsychotics in elderly patients with behavioral disturbance. http://www.feda.gov/cder/drug/advisory/antipsychotics.htm. Accessed August 23, 2005.9Sink KM, Holden KF, Yaffe K. Pharmmacological treatment of neuropsychiatric symptoms of dementia: a review of the evidence. JAMA. 2005;293:596-608.
NBND: Person-Centered Language?
NBND, Problem Behaviors, Challenging Behaviors Terms Invites Medicalization of Person Challenging to Whom? Problem to
Whom? Defines Through Caregiver Perspective Invites Confusion Regarding Goals of
Treatment/Intervention Let’s Start by Making the Goals of
Engagement Explicit, Then Identifying Language to Fit…
OUR GOALS:
REDUCE DISTRESS OF PERSON WITH DEMENTIA
REDUCE DISTRESS OF CAREGIVERS
New Language:
Distress/Distressing Behaviors
Behaviors that are signs of Distress in Persons with Dementia (unmet needs model)
Behaviors that are Distressing to Caregivers
ENGAGEMENT: An Evidence-Based,Person-Centered Approachto Distress(ing) Behaviors
Engagement: Evidence-Based Approaches
MAP (Montessori Activity Programming) Cameron Camp
TAP (Tailored Activity Programming) Laura Gitlin
BACE (Balancing Arousal Controls Excesses) Christine Kovach
Comprehensive Process Model of Engagement Jiska Cohen-Mansfield
Engagement: Two Components Conceptualization
How do I think about this? Content
How do I actually do this?
CONCEPTUALIZATION:Number One Question:
WHY IS THIS HAPPENING?What is causing the behavior?
CAUSATION THEORIES:Unmet Needs Model
The behavior of persons with dementia represents efforts of the person with dementia to get unmet needs addressed
Algase, DL, Beck C, Kolanowski A, Whall A, et al. Need-driven dementia-compromised behavior: An alternative view of disruptive behavior. Am J Alz Dis. 1996;11:12–19.
Needs of All People With Dementia Physical Needs: Hunger, Thirst,
Restroom, Pain/Discomfort, Rest Feel Safe and Secure Meaningful Positive Human Contact Meaningful Activity Feel That Are Contributing Have Success Experiences
Needs of All PeopleWith Dementia Physical Needs: Hunger, Thirst,
Restroom, Pain/Discomfort, Rest Feel Safe and Secure Meaningful Positive Human Contact Meaningful Activity Feel That Are Contributing Have Success Experiences
CAUSATION THEORIES:Learning/Behavioral Models
Problem behaviors have been inadvertently reinforced in the environment, or positive behaviors have not been reinforced. ABC Model: Antecedent->Behavior-
>Consequence
CAUSATION THEORIES:Environmental Vulnerability /Reduced Stress Threshold Model Dementia causes a lowered ability to
cope with stimulation from the environment.a Behaviors are due to person being overstressed/overstimulated.
Corollary: Under-stimulation is also problematic.b aLawton MP, Nahemo L. An ecological theory of adaptive behavior and aging. In: Eiserdorfer
C, Lawton MP, eds. The Psychoogy of Adult Development and Aging. Washington, DC: American Psychological Assocation; 1973:657-667.bKovach CR, Taneli Y, Dohearty P, et al. Effect of the BACE Intervention on Agitation of People With Dementia. Gerontologist. 2004;44:797-806.
CAUSATION THEORIES:Biological Models
Neuropathology leads to neurotransmitter imbalances which lead to neuropsychiatric symptoms or disturbances in drives which lead to Behaviors.
Cause Models are Complementary and not Mutually Exclusive Implication: Nonpharmacologic
interventions can be developed to address these causes, even for behaviors caused in large part by biological problems
Cohen-Mansfield J. Nonpharmacologic interventions for inappropriate behaviors in dementia: a review, summary, and critique. AJGP. 2001;9:361-381.
Empirical Evidence Overview a Individualized approaches to
Engagement are among the best supported non-pharmacologic Interventions for Distress(ing) Behaviors
Cohen-Mansfield J. Nonpharmacologic interventions for inappropriate behaviors in dementia: a review, summary, and critique. AJGP. 2001;9:361-381.
Salzman C, Jeste DV, Meyer RE, et al. Elderly patients with dementia-related symptoms of severe agitation and aggression: consensus statement on treatment options, clinical trials methodology, and policy. The Journal of clinical psychiatry. 2008;69(6):889-98. Available at: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2674239&tool=pmcentrez&rendertype=abstract.
Empirical Evidence Overview a MAP (Montessori Activity
Programming) Higher levels of positive engagement
and lower levels of negative forms of engagement a
TAP (Tailored Activity Programming) Reductions in frequency of behavioral
occurrences esp. shadowing and repetitive questioning b,c
Evidence for cost-effectiveness d
BACE (Balancing Arousal Controls Excesses) Reductions in agitation e
Citationsa Skrajner MJ, Camp CJ. Resident-Assisted Montessori Programming (RAMP): use of a small group reading activity run by persons with dementia in adult day health care and long-term care settings. American journal of Alzheimer’s disease and other dementias. 22(1):27-36. Available at: http://www.ncbi.nlm.nih.gov/pubmed/17533999. Accessed March 28, 2012.
b Gitlin L., Winter L, Earlan TV, et al. The Tailored Activity Program to reduce behavioral symptoms in individuals with dementia: feasibility, acceptability, and replication potential. Gerontologist. 2009;49:428-439.
c Gitlin LN, Winter L, Burkey J, et al. Tailored activities to manage neuropsychiatric behaviors in persons with dementia and reduce caregiver burden: a randomized pilot study. Am J Geriatr Psychiatry. 2008;16:229-239.
d Gitlin LN, Hodgson N, Jutkowitz E, Pizzi L. The cost-effectiveness of a nonpharmacologic intervention for individuals with dementia and family caregivers: the tailored activity program. The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry. 2010;18(6):510-9. Available at: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2938079&tool=pmcentrez&rendertype=abstract. Accessed March 28, 2012.
e Kovach CR, Taneli Y, Dohearty P, et al. Effect of the BACE intervention on agitation of people with dementia. The Gerontologist. 2004;44(6):797-806. Available at: http://www.ncbi.nlm.nih.gov/pubmed/15611216. Accessed March 28, 2012.
Engagement: Individualized, Strengths-Based Approaches Using the right APPROACH to
working with people with dementia is fundamental
The SPECIFIC ACTIVITIES that are best to provide will be easier to identify once the right APPROACH is understood
Engagement: Individualized, Strengths-Based Approaches Understanding (a) cognitive strengths and
challenges (b) physical strengths and challenges (c) individual values and preferences Allows (d) targeting Engagement efforts to
build on the person’s strengths rather than emphasizing their weaknesses
Individualized Approaches to Engagement Principles
Engagement in meaningful, pleasant, and spontaneous activities is foundational to Health and Quality of Life
“Doing”, to most people, is synonymous with being alive – Jitka Zgola
Meaningful Engagement should be an integral part of life
Yet, most caregivers have limited knowledge and skill in how to create, initiate, and maintain activities that are pleasant and meaningful
Individualized Approaches to Engagement Principles Provide methods for
CONCEPTUALIZING, CREATING, and PRESENTING activities based upon models of learning and rehabilitation
Individualized Approaches to Engagement Principles Modify activities so that all can have
a role based on their strengths, with supports for their areas of difficulties
Providing continuous opportunities for pleasant and meaningful activity is everyone’s job
Involve residents in all stages of activities Planning Developing materials Implementing
Typical* Impairments
*These are general “rules of thumb” and will not all be present for any particular person with dementia. Type of dementia, dementia stage, and many other variables will affect what skills are impaired and preserved for any particular individual.
Mr. PALMER has Dementia:*
Perception Ability to Tolerate Frustration and
Tiredness Language Memory Emotional Control Reasoning/Judgment
Preserved Skills*
*These are general “rules of thumb” and will not all be present for any particular person with dementia. Type of dementia, dementia stage, and many other variables will affect what skills are impaired and preserved for any particular individual.
Preserved Skills: Overlearned Info Rule of Thumb #1: FIRST IN = LAST OUT
The last information learned will be the first information lost. The more often a piece of information was used (rehearsed,
repeated) over a lifetime, the longer it will be preserved after the progressive dementing process begins
Examples: FIRST IN/LAST OUT: Speaking English (learned and practiced since age 2) Reading (learned and practiced since age 6) Stripping wire for an electrician (learned and practiced
almost daily from age 22-65) Examples: LAST IN/FIRST OUT:
A second language learned at age 30 Names of grandchildren Names of nursing home staff
Preserved Skills: Recognition & Implicit Memory
RULE OF THUMB #2 :
MEMORY SKILLS THAT TAKE LESS EFFORT ARE LESS IMPAIRED The types of memory that require more effort and conscious control will be more
impaired earlier in the dementing process Recognition is More Preserved (Recall is impaired first) Recall memory (list learning; i.e., fill in the blank) is more impaired earlier
than Recognition Memory (remembering with cues; i.e., multiple choice) Example: Remembering what to get at the store vs. Recognizing your
doctor’s name on a list of doctors. Implicit [Procedural] is More Preserved (Explicit is impaired first) Explicit memory (facts that are purposely learned, i.e., studying) is more
impaired earlier than Implicit memory (learning by doing or experiencing , things that are “accidentally” or “unconsciously” learned, i.e., priming, procedural learning)
Explicit Example: Learning the names of your new neighbors is Explicit. Implicit Examples: Learning that you don’t like “that mean nurse” because she is the one who always gives you your bath…or Learning which chair in the dining room is yours because you always sit there.
Preserved Skills: Semantic Categories & Memories
RULE OF THUMB #3 : Use Meaningful Categories
As Cues The ability to access information by semantic category is relatively
preserved. Semantic (definition): of or relating to meaning, especially meaning
in language Semantic Categories: broad categories for information Example: Army vs. Navy; things good to eat/not good to eat Semantic Memories: semantic memory (the facts we
study and learn throughout our lives) is relatively preserved. In contrast recent episodic memory (memory for recent events) is more impaired.
Example: Who you saw at church this morning vs. where the sun rises.
Preserved Skills: Activities Rule #1: FIRST IN LAST OUT Reading Emotional communication
even after words are gone) Social Skills (small talk) Singing/music
Rules #2 & #3: MEMORY SKILLS THAT TAKE LESS EFFORT ARE LESS IMPAIRED & USE MEANINGFUL CATEGORIES AS CUES Activities using Overlearned Facts & Cues
Category Sorts (word or picture sorts), Fill in the Blanks Things I Like to Drink/Things I Don’t Like to Drink The sun rises in the _____ (east) “Let me call you”_______ (sweetheart)
Reminiscence/Life Review Facts about the person’s past personal life
(Job, Family Life, Childhood, Military Life)
Supporting Areas of Impairment Reduced Memory & Conceptualization Abilities External cues and templates
Reduced Language & Visual Spatial Abilities Use Multiple Modalities (written & picture) Place Yourself Directly in Person’s Line of
Sight Reduced Ability for Concentration
One Thing at a Time Use Manipulatives (“hands on”) Use Aesthetically Pleasing and Interesting
Items Use effective seating arrangements
Tight circles Sit close together
Supporting Areas of Impairment Reduced Ability to Handle Stimulation Remove distractions in environment
Remove unrelated objects from table Remove distractions in activity materials
No extraneous words, pictures, directions Demonstrate silently first (watch me, now
you) Or Demonstrate and speak with few words
(2-5) Limit steps Match your speed to person’s speed
Engagement Means Meaningful as well as Do-able Activities should have a clear objective that is meaningful to the person with dementia
Provide opportunities for choice Invite participation (choice) Offer a choice of 2-3 activities/topics Workstations, Reading nooks
Remember there is no such thing as a “right way” for the person to complete the activity Don’t repeatedly correct Make it a success experience by changing
the focus
Putting it Together: Example Invite persons to be on planning committee
The committee members develop an idea for a special dinner event
There are special committees for Decorations Invitations
These goals guide development of activities such as category sorts, lead to reminiscence and conversation opportunities as everyone works
Jobs for greeters, providing menus, taking orders, bringing out food…
Everyone has a role matched to their abilities/values
Needs of All People With Dementia Meaningful Positive Human Contact Meaningful Activity Feel That Are Contributing Have Success Experiences Feel Safe and Secure Have Physical Needs Met: Hunger,
Thirst, Restroom, Pain/Discomfort, Rest
Needs of All PeopleWith Dementia Physical Needs: Hunger, Thirst,
Restroom, Pain/Discomfort, Rest Feel Safe and Secure Meaningful Positive Human Contact Meaningful Activity Feel That Are Contributing Have Success Experiences
How to Frustrate a Person with Dementia Tire Them Out Bore Them
Low Frustration Tolerance Need to Alternate Periods of Rest and
Periods of MEANINGFUL ENGAGEMENT (30:30 Rule)
Make Them Feel Like a Failure Talk Too Fast; Correct Them All The
Time; Are they Always Getting Help, Never Getting to Help
How to Help a Person with Dementia
Give Them Success Experiences! Find Ways for them to Contribute
Can They Keep Up??? Slow It Down Can They Hear??? Speak Loudly, Clearly, Slowly Can They See??? Make Sure You Have High
Contrast, No Glare
Be Enjoyable to Be Around! Implicit Learning & Emotional Memory are
Preserved Skills: People with dementia remembering people they Like (and Don’t Like)...so be Rewarding to be around...)
The Wonder Drug…
“If there was a pill you could give that completely took away problem behavior, would you give it to your patients with dementia?”23
If the effects only lasted 30 minutes, how often would you give it?
You’d give the pill every 30 minutes, Right??
Positive Attention: The Wonder Drug!!! There is...it’s called Positive
Attention. Most Unhelpful Statement Ever:
“She Just does that [insert problem behavior here] for the Attention”
More Helpful: “Let’s Figure out How to Give Her More Positive Attention so She Won’t Do That!!!”
Resources Therapeutic Activity Kits (part of the
great Hartford “Try This” Series) http://consultgerirn.org/uploads/File/tryth
is/theraAct.pdf Bathing without a Battle
http://www.bathingwithoutabattle.unc.edu/
Montessori-Based Activities for Persons with Dementia Vol. I & II Cameron Camp: see next slide
ResourcesA Different Visit: Activities for Caregivers and their Loved Ones with Memory Impairments. Amazon link: http://www.amazon.com/Different-Visit-Activities-Caregivers-Impairments/dp/0967634334/ref=pd_sim_b_5A Therapy Technique for Improving Memory: SPACED RETRIEVAL. Amazon link: http://www.amazon.com/Therapy-Technique-Improving-Memory-RETRIEVAL/dp/096763430X/ref=pd_sim_b_2Montessori-Based Activities for Persons With Dementia. Amazon link: http://www.amazon.com/Montessori-Based-Activities-Persons-Dementia-Cameron/dp/187881267X/ref=pd_sim_b_1Montessori Based Activities for Persons, Vol.II. Amazon link: http://www.amazon.com/Montessori-Based-Activities-Persons-Vol-II/dp/1933829001/ref=sr_1_2?ie=UTF8&s=books&qid=1266205783&sr=8-2
Resources http://www.health.state.ny.us/disea
ses/conditions/dementia/edge/interventions/index.htm Under Simple Pleasures > Program
Structure – there is a list of 23 activities for moderately demented individuals.
Sing Along books from S and S magazine. Patriotic sing along or dvd sing along, Old time favorites vol 1 and 2
Reminiscence Magazine (google it) Brainyhistory.com
Resources Ambient DVD to create soothing
atmospheres from VAT19.com complete the phrase from PASTIMES-
Faces and Places, Discussion Cards, Subscription to Activityconnection.com
to print the DAILY CHRONICLES to read everyday in English and Spanish
Acknowledgements Thanks to Cameron Camp, Laura
Gitlin, Christine Kovach, Cornelia Beck, JoAnn Rader, Nancy Mace, Donna Algase, and Jiska Cohen-Mansfield whose excellent work and teachings have directly informed this workshop
Thanks to all the wonderful VA staff and CLC residents whose hard work and experiences have informed this lecture, and to TVAMC, VA HSR&D VA RR&D, and University of Alabama Center for Mental Health and Aging for their support of this work
