No conflicts of interest Opinions are not that of VAMC or UA

1. No conflicts of interest • Opinions are not that of • VAMC or UA Evidence-Based Interventions in Person-Centered CareA. Lynn Snow, PhDAssociate Professor,University of Alabama Center for Mental Health and Aging & Dept. of Psychology; Clinical Research Psychologist,Tuscaloosa VA Medical Center

2. 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.

3. Empowers the Individual Honors the Uniqueness of Each Individual Fosters Optimal Living for Each Individual Person-Centered Care…. Supports Each Individual in Functioning at their Highest Possible Level of Ability Core Values Are: Choice Dignity Respect Purposeful Living Is Centered Around the Person and their Needs and Preferences Rather than the System Providing the Care

4. 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/

5. “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.

6. 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/

7. Ageism “In our society the only good person is one who looks and acts like a young person” --Bill Thomas, Founder of Eden Alternative

8. 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

9. 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/

10. 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/

11. 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/

12. The Battle for Person-Centered Care: In the Trenches with NoncognitiveBehavioral and Neuropsychiatric Disturbances (NBND)

13. 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.

14. 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 ClinNeurosci. 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.

15. Noncognitive Behavioral and Neuropsychiatric Disturbances (NBND) • Neuropsychiatric Symptoms • Affective Cluster • Psychotic Cluster • Challenging Behaviors • Disturbances in Drives

16. NBND: Neuropsychiatric Symptoms Affective Cluster Psychotic Cluster • Anxiety • Irritability • Euphoria • Labile • Panic • Apathy • Anhedonia • Depression • Suicidality • Delusions • Suspiciousness • Paranoia • Hallucinations • Illusions

17. 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

18. NBND: Disturbances in Drives • Hypersexual • Sexual aggression • Poor sleep • Sleeps a lot • Out of bed at night • Poor appetite • Weight loss • Excessive appetite • “Sundowning”

19. 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.

20. 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

21. 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.

22. 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…

23. OUR GOALS: • REDUCE DISTRESS OF PERSON WITH DEMENTIA • REDUCE DISTRESS OF CAREGIVERS

24. New Language:Distress/Distressing Behaviors • Behaviors that are signs of Distress in Persons with Dementia (unmet needs model) • Behaviors that are Distressing to Caregivers

25. ENGAGEMENT: An Evidence-Based,Person-Centered Approachto Distress(ing) Behaviors

26. 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

27. Engagement: Two Components • Conceptualization • How do I think about this? • Content • How do I actually do this?

28. CONCEPTUALIZATION:Number One Question:WHY IS THIS HAPPENING?What is causing the behavior?

29. 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.

30. 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

31. 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

32. 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

33. 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 aLawtonMP, 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. bKovachCR, Taneli Y, Dohearty P, et al. Effect of the BACE Intervention on Agitation of People With Dementia. Gerontologist. 2004;44:797-806.

34. CAUSATION THEORIES:Biological Models • Neuropathology leads to neurotransmitter imbalances which lead to neuropsychiatric symptoms or disturbances in drives which lead to Behaviors.

35. 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.

36. 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. SalzmanC, 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.

37. 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 questioningb,c • Evidence for cost-effectivenessd • BACE (Balancing Arousal Controls Excesses) • Reductions in agitatione

38. Citations a 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 GitlinL., 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 GitlinLN, 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 GitlinLN, 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.

39. 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

40. 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

41. 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 – JitkaZgola • 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

42. Individualized Approaches to Engagement Principles • Provide methods for CONCEPTUALIZING, CREATING, and PRESENTING activities based upon models of learning and rehabilitation

43. 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

44. 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.

45. Mr. PALMER has Dementia:* • Perception • Ability to Tolerate Frustration and Tiredness • Language • Memory • Emotional Control • Reasoning/Judgment

46. 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.

47. 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

48. 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.

49. 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 recentepisodic memory (memory for recent events) is more impaired. • Example: Who you saw at church this morning vs. where the sun rises.

50. 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)