1. Caring for Persons with Dementia: Why Context Matters Susan M. McCurry, PhD smccurry@uw.edu Northwest Research Group on Aging University of Washington School of Nursing Generational Resilience Conference October 30, 2014

2. Disclosure Statement Some content from this presentation will be derived from materials that Dr. McCurry has published on dementia care. 2

3. “There are only four kinds of people in the world: those who have been caregivers; those who are currently caregivers; those who will be caregivers; and those who will need caregivers." - Rosalynn Carter 3

4. Dementia as Chronic Illness  Alzheimer’s disease & dementia affects the fastest growing segment of our population  One in 9 Americans age 65 and older (11%) has Alzheimer’s disease  About one-third (32%) of persons age 85 and older have AD  Individuals are being diagnosed earlier and will most likely live with the disease for many years 4 Alzheimer’s Association: 2014 Alzheimer’s Disease Facts & Figures

5. The Toll on Families is High  Families provide the bulk of care (85%) for older adults with dementia  In 2013, 15.5 million Americans provided 17.7 billion hours of unpaid care  Nearly 15% of caregivers are long-distance caregivers, living an hour or more away  More than 60% of caregivers rate their emotional stress as high or very high 5

6. The Costs Are Staggering Alzheimer’s Association: 2014 Alzheimer’s Disease Facts & Figures 6

7. Behavior and Mood Disturbances Are Widespread  Occur in 70-90% of individuals at some point  Increase as disease progresses from mild to severe stages  Primary source of stress & burden to family and staff caregivers  Common cause of institutionalization  May be difficult to treat, and require more than one intervention 7

8. So What Can We Do To Help??? 8

9. Non-pharmacological interventions are recommended as the first-line treatment for the mood and behavior changes associated with cognitive decline. Give Behavioral Treatment a Try 9

10. Reasons to Focus on Behavior  Cannot alter brain disease progression  Can change behavior  Can improve functional status  Can increase quality of life for patient and caregiver 10

11. Agitation (1993) Early-stage memory loss (2006, 2011) Physical activity (1993, 1998. 2012) RALLI/MCI (2006) Sleep (1993, 1998, 2005) AFH Sleep (2006) AFH Staff Training (2009) Depression (1988, 2002) Teri, et al. 2005. Research and practice in Alzheimer’s disease and cognitive decline, Vol. 10, p.153-158. New York: Springer. STAR (1999, 2004) STAR-C (1999) (1999) STAR Effectiveness (2009) STAR-C Effectiveness (2009, 2011) 11 Behavioral Treatments Are Evidence Based The Seattle Protocols

12. All Share Common Characteristics  Mood and behavior changes are not “problems,” but attempts to communicate or compensate  Understanding behavior requires thinking about both past and present circumstances  The dyadic interaction is the focus of treatment  Effective treatment requires responding to the underlying need/context, not just eliminating the “symptom” of concern  Behavioral logs help identify patterns 12

13. Focus on Quality of Life Quality of life for older adults with chronic illness: a sense of well-being, satisfaction with life, and self- esteem, accomplished through the care received, the accomplishment of desired goals, and the ability to exercise a satisfactory degree of control over one’s life. 13

14. Step 2: DANCE Build & maintain relationships Step 3: Problem-Solving Functional Analysis Sue’s Contextual Approach to Working with Caregivers Step 1: Assessment Dementia diagnosis & symptoms 14

15. Step 1: Assessment Dementia Diagnosis & Symptoms We don’t want to intervene until we know what is going on. 15

16.  One or more cognitive symptoms (i.e., loss of memory, language) that interfere with daily functioning  Change from the past  Caused by dozens of different medical conditions (e.g., Alzheimer’s), many of which co-occur What is Dementia? Dementia is a brain disease. Persons with dementia do not have control over their changes in thinking and behavior. 16

17. 17 Symptoms Progress Over Time Teri L. & Huda P. 2001. © STAR: Staff Training in Assisted Living Residences training manual, 5 th ed. 17

18. Dementia Symptoms Are Variable  No two people are alike (“If you’ve met one person with Alzheimer’s disease, you’ve met one person with Alzheimer’s disease”)  It is typical for symptoms to wax and wane  This unpredictability and inconsistency is often what is most difficult for caregivers to accept 18

19. Behaviors Occur in a Context Medical (including cognitive) Interpersonal EnvironmentalHistorical Behavior of Concern 19

20. Cognitive Causes of Behavior Change MemoryOrientation Recent Attention/concentration Remote Perception Communication (aphasia) Visual Intentional action (apraxia) Auditory Recognition (agnosia) Tactile Executive function Olfactory JudgmentGustatory Problem-solving Motor coordination Starting/stopping behavior Emotional/behavioral Abstract reasoningPersonality McCurry S, Drossel D. (i2011). Treating dementia in context: A step-by-step guide. APA Press. 20

21. Medical Causes of Cognitive Decline  Systemic Disease  Cardiovascular disease  Pulmonary disease  Kidney and liver disease  Thyroid disease  Cancer  Deficiencies  B 12  Thiamine  Niacin  Dementing Illnesses  Alzheimer’s disease  Vascular dementia  Frontal-temporal dementia  Parkinson’s disease  Huntington’s disease  Multiple Sclerosis  Down’s syndrome Kukull W & Bowen J. Public health, epidemiology and neurologic diseases. In: Detels, et al. (Eds), Oxford Textbook of Public Health. Oxford University Press (2009).  Infections  Encephalitis  Meningitis  HIV/AIDS  Lyme disease  Toxins  Drugs, alcohol, heavy metals 21

22. Other Physical Causes of Behaviors  Any infection  Pain or physical discomfort  Adverse medication effects  Incontinence or constipation  Hunger or dehydration  Lack of sleep and fatigue  Depression or anxiety  Sensory loss 22

23. Delirium Disturbance in a person's mental abilities that results in confused thinking and a decreased awareness of one's environment. Unlike dementia, the onset of delirium is usually rapid (hours to days) and often has a treatable medical cause. An untreated delirium can be a medical emergency!! 23

24. Environmental Causes of Behaviors  Too much noise, activity, clutter, people  Unfamiliar persons, places, things  Startling movements, noise, or touch  Insufficient lighting  Changes in schedules and routines  Shift changes  Being left alone for too long, boredom  Activities that are perceived as insulting or childlike 24

25. Interpersonal Causes of Behaviors  Repeated questions or demands  Caregiver impatience, critical tone of voice  Inability to perform simple tasks  Frustration at not being understood  Being rushed  Being touched or held in ways that are frightening or confining  Verbal reasoning and logical explanations 25

26. Prior Experience & History  Are there past events that may be impacting current behavior?  Is the observed behavior part of a recurrent pattern?  How has dementia changed the person’s roles, activities, personal freedom, and relationships?  What strengths has the person had that you can build upon? 26

27. There are Also Multiple Perspectives to Every Dementia Story Person w/ dementia Caregiver(s) Clinician(s) Other key partners 27

28. Medical/cognitive Gathering Perspectives is Part of the Contextual Assessment Person w/dementia Caregiver(s) Clinician(s) Other key partners InterpersonalEnvironmental Prior experience and history 28

29. McCurry, S.M. 2006. When a family member has dementia. New York: Praeger Press Step 2: DANCE Build and Maintain Relationships Don’t argue Verbal and nonverbal communication Acceptance Realistic limitations Nurture yourself Respite and asking for help Creative problem-solving ABCs of behavior change Enjoy the moment Pleasant events, laughter & uplifts 29

30. Communication: Don’t Argue!  Communication can make or break any relationship  As cognitive decline progresses, nonverbal communication is more important; is your body sending the message you intend?  Rapport building trumps information gathering or accuracy of facts  Whenever there is a problem, check to see if there is a communication breakdown 30

31. Watch Nonverbal Cues: Be Polite! Patience Don’t be in a hurry. Say/do one thing at a time. Focus on the relationship more than content. Organization Use prompts and reminders as needed. Don’t keep people waiting. Make sure prosthetics are handy. Laughter Smile! Try to be pleasant and engaging. Don’t be afraid of friendly humor. Sincere praise is a gift. Ignore what you can “Pick your battles.” Don’t correct or admonish unless the person is doing something unsafe or unhealthy. Watch for ageist stereotyping. Tone of Voice Cultivate a warm and respectful style. Try not to sound “bossy” or patronizing. Would you want to be talked to this way??? Eye Contact Look directly at the person. Stand or sit at eye level. Smile/nod to acknowledge you heard what was said. McCurry S, Drossel D. (2011). Treating dementia in context: A step-by-step guide. APA Press. 31

32. “Listen with respect, comfort and redirect.” Linda Teri, Ph.D. 32

33. “I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou The specific memory may be gone, but the emotional tone remains 33

34. Acceptance: Realistic Expectations  Dementia affects the way a person thinks, feels, makes decisions, and reacts  Persons with dementia do not have control over their symptoms  Dementia symptoms fluctuate, sometimes unpredictably  Because of their brain disease, persons with dementia may not realize how much help they need 34

35. Photographs courtesy of Dr. Thomas Bird, Seattle VAMC Brain Changes in Alzheimer’s Disease 35

36. Realistic Expectations Early Stage Obtain medical evaluation to rule out treatable causes of dementia Encourage person to be as independent as possible in normal routines Expect inconsistent gaps in ability Don’t assume that changes are deliberate or due to “denial” or “just not trying” Mid-Later Stage Regularly double-check driving, financial records, medications, diet, hygiene Share safety concerns with involved family or caregivers Don’t expect the person with dementia to readily accept your help. Do expect to sometimes feel embarrassed, angry, or disappointed 36

37. Nurture yourself: Take a Break When You Need It  “Check your own pulse first”  Physical and emotional health: The best inoculation against burnout  Who in your life wants to help but doesn’t know how?  Find 10 minutes every day to do something that you love.  Respite is good for caregivers and for persons with dementia 37

38. Mini-Practices can be done anytime, anywhere 5 steps –Take a long breath –Say the word RELAX to yourself –Slowly exhale and while you do, allow yourself to relax and focus on the sensations of relaxation –Allow your jaws to relax, and sensations of heaviness to flow down from shoulders through your body –Go about doing whatever you were doing Most effective when tied to environmental cues that happen often throughout the day (e.g., phone calls, stopped at red light, pass a certain room in the house, etc.) Exercise: Mini-Practice Relaxation 38

39. View source: orchardafrica.org 39

40. Expanding the Community of Care Family Neighbors Friends Church members Service organizations Coworkers Clubs Community resources Health care professionals Seek out people who make you feel appreciated and loved 40

41. Community Resources Alzheimer’ Association (www.alz.org; 1-800-272-3900) National Adult Day Services Association (www.nadsa.org; 1-800-558-5301) National Association of Professional Geriatric Care managers (www.caremanager.org; 1-520-881-8008) Area Agencies on Aging (AAA) –Includes Senior Information and Assistance, Senior Rights Assistance (www.seniorservices.org; 1-800-972-9990) Respite services –National respite locator (www.respitelocator.org) 41

42. Activator: What happened before the behavior? Behavior: What exactly was the person with dementia doing? Paint a verbal picture! Consequence: What happened after the behavior? Creative Problem-Solving: The ABCs of Behavior Change 42

43. We focus on behaviors we can see and count: Behaviors that are a safety concern, That interfere with necessary care, Or that reduce quality of life for either caregiver or care-receiver 43

44. Goals of the A  B  Cs A C B A C B Identifying and changing activators can prevent a behavior from happening Changing your response to behaviors can reduce their duration, severity, and probability of occurring in the future 44

45. 4 Ws: Which one behavior do you want to work on first??? 45

46. What were possible activators (before the behavior)? What were some consequences (happened after the behavior)? 46

47. Observation is How We Find Patterns  Are there days that the behavior does not occur?  Does it only happen around certain people?  Does it have a cyclic pattern?  Is it more likely under certain conditions? 47

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49. Keep the Whole Context In Mind ActivatorsBehaviorConsequences What happens after the problem behavior occurs Get to know me! Medical Interpersonal Environmental Historical Gather history Is this a new behavior, or has it happened before? Is it a sudden onset or gradual change? What helps? What does the behavior accomplish? − Does it help the person avoid something unpleasant? What people, things or activities help the resident feel calm or happy? McCurry S, Drossel D. (2011). Treating dementia in context: A step-by-step guide. APA Press. Past and present “triggers” for behavior ABC 49

50. Video Observation Looking for ABCs 50

51. Brainstorm ideas for changing activators and consequences Try it for a week Modify the plan as needed (if it’s working, keep doing it; if it’s not working, try something new) 51

52. Video Observation Implementing Plan 52

53. Enjoy the Moment: Finding the Gifts of Dementia Care  Laughter and love are good medicine  Look for the uplifts: Why are you a caregiver? What does your loved one give back?  Pleasant events improve mood and reduce behavior problems 53

54. Depression is a Common Behavior Medical Interpersonal EnvironmentalHistorical Depression 54

55. Medical Causes Historical Environmental Interpersonal Recurrent depression Family history of psychiatric disorders Past traumas Brain changes from aging or dementia Female sex Chronic medical illness Stroke/heart disease Medications Physical frailty Alcohol abuse Sensory deficits Insomnia Lack of exercise Seasonal depression (  light) Boredom or loneliness Widowed or divorced Unwanted role changes Loss of independence Residential move  Household income Stressful life events Family caregiving 55

56. Depression: A Downward Spiral 56

57. Relationship between Mood and Pleasant Events Pleasant events Mood Keep adding on those pleasant events!!!! 57

58. Promoting Pleasant Events  Individuals with dementia retain many skills despite cognitive impairments.  Interpersonal relationships are very important, and are fostered by shared pleasant activities.  Caregiver depression and burden may be lessened by focusing on positive, rather than negative interactions. 58

59. Increasing Pleasant Activities  Not just any activity will do – it has to be tailored to the person.  What did the person enjoy in the past?  What does he/she enjoy now?  Enhancing self-worth and satisfaction are as important as “fun.”  How can tasks be modified to accommodate current abilities?  Who is available to help? 59

60.  Eating a snack  Getting letters or cards  Looking at pictures  Being complimented  Taking a walk  Petting the cat  Listening to music Pleasant Events Can Be Simple Pleasant events can improve mood even if the person with dementia doesn’t remember doing them! 60

61. Sample Activity Categories  Structured physical activity: – Exercise, household or yard chores, hobbies, anything that expresses creativity  Life story notebook: – “Remembering is telling the story of your life – as you want it to be told” (Rebecca Allen, Legacy Project founder)  Memory notebook: – Simple instructions for doing things that matter G Hersch, T Miller. 15 th annual Alzheimer’s Association Dementia Care Conference (2007). ©Dan Kauffman 61

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63. Pleasant Events Schedule: AD  1995 R. G. Logsdon, Ph.D. & L. Teri, Ph.D. Instructions: This schedule contains a list of events or activities that people sometimes enjoy. It is designed to find out about things your relative has enjoyed during the past month. Please rate each item twice. The first time, rate each item on how many times it happened in the past month (frequency); the second time, rate each event on how much your relative enjoys the activity. FrequencyEnjoy Activity Not At All 1 to 6 Times 7 or more Times Not At All Some- what A Great Deal 1.Being outside 2.Shopping, buying things 3.Reading or listening to stories, magazines, newspapers 4.Listening to music 63

64. Look For “Safety Bubbles”  No pressure to remember people, places, events, or facts accurately  Feelings of dignity and self- respect are maintained  “Being with” is more important than “getting something done”  Adult day programs can provide this for many people Situations where the person’s dementia is not relevant 64

65. Every interaction can be a pleasant event. Pleasant events are everyone’s job! 65

66. Pleasant events can: Reduce likelihood of a behavior occurring (activator) Reduce its duration/ severity (consequence) Open up a world of possibilities to try when you feel “stuck” Generally improve everyone’s mood and quality of life 66

67. Summary  Everything a person with dementia says, feels, and does has purpose and meaning.  Good dementia care requires evaluating multiple perspectives and contexts  The dementia DANCE can help you maintain relationships and develop creative problem-solving skills 67

68. Advantages of Behavioral Treatment  Addresses interpersonal and environmental causes of behavioral disturbances  No interactions with other medications or side effects  Empowering for caregivers and individuals with dementia  Gives caregivers tools they can use in future situations 68

69. A-B-Cs: Simple but Tricky  Multiple problem behaviors can happen at one time, or one right after another  Behaviors can be influenced by more than one thing at a time  The message being communicated is more important than the actual behavior  Monitoring and brainstorming can be exhausting  If you try to fix everything at once, it will seem overwhelming so pick 1 place to start 69

70. The best way to get a good idea is to get lots of ideas. Linus Pauling 70

71. Perfection is not the goal. 71

72. Some activators and consequences are easier to change than others. Make sure your plan is realistic and that everyone involved in the person’s care is willing and able to give it a try. 72

73. Limitations to Behavioral Treatments  Not crisis management  No treatment works for all people all of the time  Consistency is important, so everyone involved in care needs to be on board with the plan  Both caregiver and care-recipient factors influence what behavioral interventions are feasible and effective 73

74. Want to Know More? Books for Clients Gruetzner H. Alzheimer’s: A caregiver’s guide and sourcebook. John Wiley, 2001. Kuhn D, Verity J. The art of dementia care. Delmar Cencage Learning, 2008. McCurry SM. When a family member has dementia. Praeger Press, 2006. Robinson A et al. Understanding difficult behaviors. Ypsilanti, MI: Geriatric Education Center of Michigan, 2007. Books for Clinicians Mast BT. Whole person dementia assessment. Health Professions Press, 2011. McCurry SM, Drossel C. Treating dementia in context. American Psychological Association Press, 2011. 74

75. Websites http://www.alz.org (Alzheimer’s Association) http://n4a.org/ (Area Agencies on Aging) http://www.nia.nih.gov/alzheimers (NIH Alzheimer’s Disease Education and Referral Center; ADEAR) http://www.caregiving.org (National Alliance for Caregiving; NAC) http://www.caremanager.org (National Association of Professional Geriatric Care Managers) 75

76. Linda Teri, Rebecca Logsdon, Susan McCurry Cathy Blackburn, Martha Cagley, Amy Cunningham, David LaFazia, Ellen McGough, Cat Olcott, Amber Pelham, Ken Pike The Seattle Protocols Core Research Team Research on the Seattle Protocols has been funded by the National Institute of Mental Health, National Institute on Aging, the Alzheimer’s Association, the States of Oregon and Washington, and the University of Washington