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/diseases/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