Maximizing Quality of Life for Older Adults Across the Cognitive
Continuum
Susan M. McCurry, [email protected]
Northwest Research Group on AgingUniversity of Washington School of Nursing
American Psychological Association
March 15, 2015
U.S. Census Bureau. In: Profile of Older Americans: 2013. Administration on Aging (AoA), Administration for Community Living, U.S. Department of Health and Human Services. 2
3
65% Alzheimer’s Disease33% Other Irreversible Conditions
– Vascular disease, dementia with Lewy bodies, frontotemporaldegeneration, Parkinson’s disease, Creutzfeldt-Jakob disease, normal pressure hydrocephalus, Alcohol or drug abuse, HIV/AIDS, Huntington’s disease, mixed causes
2% to 3% Reversible Conditions– brain tumor, metabolic
disturbance– depression can look like dementia
Alzheimer’s Disease
Other Irreversible Conditions
ReversibleConditions
More than 70 conditions can cause dementia
4McCurry S, Drossel D. (2011). Treating dementia in context: A step-by-step guide. APA Press.
Xu, W., et al. 2013. Epidemiology of Alzheimer’s disease. In: Zerr, I. (Ed.), Understanding Alzheimer’s disease. (Chapter 13). InTech (Open Access Book). 5
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The Costs Are Staggering
Alzheimer’s Association: 2014 Alzheimer’s Disease Facts & Figures
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Dementia as Chronic Illness Recent changes in diagnostics emphasize the
continuum from normal brain aging to severe brain pathology
DSM-5 – Minor/major neurocognitive disorders represent a decline from previous level of cognitive function
NIA/Alzheimer’s Association now recognizes Preclinical AD in their research diagnostic guidelines based on changes in brain, cerebrospinal fluid and/or blood that may be 20+ years before clinical symptoms
Individuals are being diagnosed earlier and will most likely live with the disease for many years
8
So What Can We Do To Help???
9
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.
10
http://health.mashangel.com11
12
Establish stable and sufficient sleep routines
Move your body: maintain regular exercise
Find meaning, purpose, and joy in life
3 Practices for Enriching QOL Across the Continuum
13
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Increased glucose tolerance/ insulin resistanceReduced risk for diabetesIncreased leptin levels regulating
hunger and appetiteImproved immune functionReduced stress hormone levels and
inflammatory responseImproved cardiovascular functionReduced risk for neurologic
diseaseReduced risk for accidents
Sleep Changes As We Age
Courtesy of Charles Morin, PhD
15
Primary Sleep Disorders Obstructive sleep apnea (OSA)
Overlapping risk factors for stroke (HTN, diabetes, atrial fibrillation, cardiac and carotid disease)
Widely underdiagnosed; compliance w/CPAP often poor
Periodic leg movement syndrome (PLMS) Restless legs syndrome
Linked to low iron levels
REM sleep behavior disorder (RBD) Most common in older men
Philips B, et al. 2000. Arch Intern Med, 160: 2137-2141Gehrman PR, et al. 2003. J Am Geriatr Psychiatry, 11: 426-433Young T, et al. 2004. JAMA, 291:2013-2016.Rose KM, et al. 2011. Sleep, 34:779-786
Increased in persons with Parkinson’s
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Insomnia and Medical / PsychiatricConditions (National Health Interview Survey)
0
5
10
15
20
25
30
35
40
45
50
Hypertension CHF Diabetes Obesity Anxiety orDepression
Co
mo
rbid
ity F
req
uen
cy, %
No InsomniaInsomnia
Pearson NJ, Johnson LL Nahin RL. Arch Intern Med 2006 166: 1775-1782
16.6
30.3
3.00.7
5.6
10.8 9.3
45.9
29.4
20.9
17
Drugs that Can Worsen Sleep
• Alcohol• CNS stimulants (e.g., caffeine, theophylline,
nicotine)• Beta-blockers, calcium channel blockers• Bronchodilators• Corticosteroids• Decongestants• Diuretics• Stimulating antidepressants, cognitive enhancers• Thyroid hormones
18
Environmental & Behavioral Causes
• Noise• Pets• Roommate or bed partner behaviors• Light (including screens of all types)• Season of year• Temperature• Bedding comfort• Dietary practices• Exercise routines
Sleep Hygiene Recommendations
• Regularize sleep / wake schedules (especially rise time)• Establish a relaxing bedtime routine• Increase daytime light exposure, keep sleep areas dark • Reduce alcohol and caffeine use• Keep bedroom a comfortable (cooler) temperature• Eliminate environmental factors that interrupt sleep • Avoid stimulants and stimulating behavior at night
(including screens and radio if you wake up during at night)• Don’t watch the clock if you can’t sleep (turn it around!)• Get regular exercise• Ask your pharmacist about medication side effects
Stepanski EJ, Whatt JK. 2002 Sleep Med Rev, 7(3)::215-225 20
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“Is there one thing you will commit to change this week?”“How can I help you get there?”
CBT-I Multicomponent ApproachDomain Technique Aim
Behavioral components
Sleep hygiene Promote habits and environments that help sleep
Stimulus control Strengthen bed and bedroom as sleep stimuli
Sleep (bed) restriction Restrict time in bed to improve sleep depth and consolidation
Cognitive components
Cognitive therapy Address thoughts and beliefs that interfere with sleep
Relaxation/mindfulness training
Reduce arousal and decrease anxiety
Acceptance based Decrease struggle to control sleep at cost of living your life
Circadian components
Circadian rhythm entrainment
Reset or reinforce biological rhythm
Abbreviated Cognitive-Behavioral Insomnia Therapy1
Two 25- minute sessions, 2 weeks apart• Eliminate sleep-incompatible activities in bed/bedroom• Avoid all daytime napping• Follow a consistent sleep-wake schedule
Brief Behavioral Treatment for Insomnia2
One session with booster phone call 2 weeks later• Reduce your time in bed• Don’t go to bed unless you are sleepy• Don’t stay in bed unless you are asleep• Get up at the same time every day of the week, no matter how much
you slept the night before1. Edinger JD, et al. Sleep. 2003;26:177-182.2. Buysse DJ et al. Arch Intern Med. 2011; 171(10);887-895.
Brief Variants of CBT-I
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Want to Know More?Books for Clients• Edinger JD, Carney CE. Overcoming Insomnia: A Cognitive-Behavioral
Therapy Workbook. Oxford University Press, 2008.
• Hauri P, et al. No More Sleepless Nights. John Wiley & Sons, 2001. Book and Workbook.
• Meadows, G. The Sleep Book. London: Orion House, 2014.
Books for Clinicians• Edinger JD, Carney CE. Overcoming Insomnia: A Cognitive-Behavioral
Therapy Approach Therapist Guide. Oxford University Press, 2008.
• Perlis ML et al. Cognitive Behavioral Treatment of Insomnia: A Session-by-Session Guide. Springer, 2005.
• Perlis ML et al. (Eds). Behavioral Treatments for Sleep Disorders: A Comprehensive Primer of Behavioral Sleep Medicine Interventions (Practical Resources for the Mental Health Professional). Elsevier, 2011. 24
Websiteshttp://www.cbtforinsomnia.com
http://www.sleepeducation.com/
http://www.sleepfoundation.org/
http://www.aasmnet.org/
http://www.healthfinder.gov/prevention/ViewTopic.aspx?topicID=68&cnt=1&areaID=0
http://www.nhlbi.nih.gov/health/prof/sleep/index.htm
http://www.behavioralsleep.org/ 25
Issues: Sleep and Normal Aging• Medical/medication effects very common
• Unrealistic client expectations
• Daytime side-effects from CBT-I (fatigue, poor concentration, mood swings)
• Real/perceived obstacles to behavioral sleep plans (bed partner, mobility issues, animal love, “it’s cold and dark out there!”)
• Boredom during increased out-of-bed time
• Paradoxical reactions (e.g., anxiety during relaxation) 26
Socio-Cultural Considerations Health status of diverse populations
Prevalence of primary sleep disorders, medical morbidities (especially CVD, obesity), sedating substance use, access to sleep centers
Economic status Shift work, on-the-job stress, # weekly working hours,
financial concerns, geographical/regional variations
Familial or cultural values/beliefs/sleep practices Napping, bed/rise times, expectations about sleep
quality, multiple generation cohabitation, pre-bedtime activities
27National Sleep Foundation. 2010. 2010 Sleep in America Poll,
Issues: Sleep & MCI Emphasize regular sleep-wake schedule, even
if person is not reporting insomnia symptoms
Forgetfulness, executive dysfunction can plague action plans
Unlikely primary care provider is talking about sleep so may not seem important to client
Anxiety and depression often accompany new diagnoses; relaxation/mindfulness training can be very useful
Increased importance of involving bed partner in behavioral plans 28
“While the brain sleeps, it clears out harmful toxins, a process that may reduce the risk of
Alzheimer’s , researchers say.” - Jon Hamilton, NPR, October 17, 2013
29
Issues: Sleep & Dementia
All roads lead to a caregiver30
Physiological Causes
Nocturnal behaviors are not under volitional control
Alzheimer’s disease • Loss of neurons that regulate circadian sleep-wake
cycles (SCN: the body’s internal “clock”) and thermoregulatory processes
Parkinson’s disease and related disorders• Sleep problems nearly universal in advanced PD
• Tremors, muscle contractions and cramps, limb jerks, nocturia, nightmares, daytime “sleep attacks”
31
Domain Technique Aim
Behavioral components
Sleep hygiene* Promote habits and environments that help sleep
Stimulus control Strengthen bed and bedroom as sleep stimuli
Sleep (bed) restriction*
Restrict time in bed (including naps) to improve sleep depth and consolidation
Cognitive components
Cognitive therapy Address thoughts and beliefs that interfere with sleep
Relaxation training Reduce arousal and decrease anxiety
Acceptance based Decrease struggle to control sleep at cost of living your life
Circadian components
Circadian rhythm entrainment*
Reset or reinforce biological rhythm (with light and/or exercise)
*CBT-I strategies that can be environmentally implemented by a caregiver can be useful with cognitively impaired individuals.
32
Implementing Sleep Plans
Teach caregivers the ABC’s of behavior change
Find ways to make interventions enjoyable and compatible with other household routines
Promote use of a sleep log
Realistic expectations: Will amount of improvement be worth the effort?
Ascertain if the caregiver is getting some benefit from the current sleep pattern
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The ABCs of Behavior Change
Activator: What happened before the behavior?
Behavior: What was the person with dementia doing? With whom, where, when?
Consequence: What happened after the behavior?
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Goals of the A • B • Cs
A CB
A CB
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
35
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?
Keep a sleep log for 1-2 weeks to help you see what is going on.36
Applying the ABCs to Sleep Problems
What are possible activators for sleep problems in dementia?
Medical Interpersonal
Environmental Historical
Sleep Problems
37
Medical Causes Historical
Environmental
Interpersonal
Poor sleep habitsDietPreferred routinesPast work schedules
Brain changes from aging or dementia
Daytime nappingPrimary sleep disordersMedicationsChronic pain Medical illnessHunger, thirstIncontinenceDepression or anxietyLack of daytime exercise
Roommate sleep habitsBoredom or lonelinessCaregiver habits
Bedroom light exposureNoisePetsTemperatureUncomfortable beddingSeason of yearVisual exit cuesUnfamiliar surroundingsSensory deprivation or
overstimulation 38
Consider The Larger ContextActivators Behavior Consequences
What happens after the problem behavior occurs
Get to know me!• Lifelong sleep quality• “Owl” or “lark”• Prior occupation (shift or seasonal) • Co-sleeping preferences• Past alcohol or drug use• Traumatic events
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? • How has the caregiver been responding?• What people, things or activities help the resident feel calm or happy?
Past and present “triggers” for behavior
A B C
McCurry S, Drossel D. (2011). Treating dementia in context: A step-by-step guide. APA Press.
40
Things We’ve Learned Along the Way Providing caregivers with sleep education and
written information alone is not enough
Treating care-receiver sleep disturbances does not necessarily improve caregiver sleep, and vice versa
25% of subjects never follow treatments as prescribed
More is not always better for improving sleep; rather, finding the right treatment for each situation is essential
McCurry SM, et al. 2003. J Am Geriatr Soc, 51: 1455-1460McCurry SM, et al. 2010. Am J Alzheimer Dis Other Dem, 25: 505-512McCurry SM, et al. 2011. J Am Geriatr Soc, 59:1393-1402.
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Light Therapy in Dementia Light is the main synchronizer of circadian
systems, including sleep and activity
Many older adults have limited exposure to bright light
Principles of light therapy:
- increase daytime light exposure- decrease evening and nighttime light- maintain a consistent light/dark cycle
Bright light therapy may improve sleep, reduce napping, and decrease depression and agitation in persons with dementia
42
Real Life Lessons: Light Therapy
Some people with dementia dislike having a bright light source nearby, increasing risk for agitation
Light has an energizing effect at night, so don’t use immediately before bedtime
Sleep benefits of bright light decay swiftly when you stop using it
A big light box takes up a lot of room; smaller sources make it more difficult to maintain a correct angle/dose to be effective
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Make Sure You Know Who’s The Client
Caregiver and care-recipient factors influence the reliability of reports of sleep problems in persons with dementia
Caregiver sleep disturbances do not always co-occur with patient sleep problems
Caregiver depression and burden predicts the onset of caregiver sleep problems over 5 years; ADL impairment and depression predicts onset of care-recipient sleep problems
McCurry SM, et al. 2006. Am J Geriatr Psychiatry, 14: 112-120McCurry SM, et al. 208. Sleep, 31: 741-748McCurry SM, et al. 2009. Sleep Med Clin, 4:519-526. 44
45
Establish stable and sufficient sleep routines
Move your body: maintain regular exercise
Find meaning, purpose, and joy in life
3 Practices for Enriching QOL Across the Continuum
46
47
Increases aerobic capacityReduces blood pressureLowers diabetes riskMaintains immune functionKeeps bones strongDecrease fat, increase muscleImproves breathingBoosts energyImproves sexSpeeds reaction timeDecreased risk for fallsDecreases depression, anxiety
% Adults Meeting Aerobic and Muscle Strengthening PA Guidelines
Data Source: State Indicator Report on Physical Activity, 2014, Centers for Disease Control & Prevention48
Issues: Exercise and Normal Aging Time / building it into a routine
“I really hate to exercise”
Unrealistic expectations
Lack of motivation
Poor health / obesity
Increased risk for injuries
No history of exercising
Too expensive49
Socio-Cultural Considerations Health status of diverse populations
Obesity and associated dietary preferences, injury/ chronic pain, availability of exercise-related educational materials in language of choice
Economic status Neighborhood safety and walkability, access to
affordable recreational facilities, free time for leisure activities
Familial or cultural Perceived value of exercise in work or recreation,
preferred types of exercise (e.g., dancing), body image stereotypes, gender roles, culturally competent exercise leaders
50August KJ, Sorkin DH. 2010. J Gen Intern Med, 26:245-250.
51
“Is there one thing you will commit to change this week?”“How can I help you get there?”
52
“Resistance training significantly improved global cognitive function with maintenance of executive
and global benefits over 18 months” (Singh et al. 2014, J Am Med Dir Assoc 15(12): 873-880)
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Exercise Benefits for Individuals with Cognitive Impairment
Improved Physical Performance
Blankevoort et al., 2010Heyn et al., 2004Kwak et al., 2008Rao et al., 2014
Delayed onset and progression of cognitive impairment
Geda et al., 2010Larson et al, 2006Middleton et al. 2008Rovio et al., 2005Singh et al. 2014
Reduced Risk for Falls and Fractures
Chan et al., 2014Hauer et al., 2011Littbrand et al., 2011Rolland, et al, 2000
Improved Mood/Behavior and Reduced Risk of Institutionalization
McCurry et al., 2005Rolland, et al, 2000Teri, et al, 2003
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Issues: Exercise & MCI Exercise offers hope: Lack of any alternative
pharmacologic treatments can be an excellent motivator
Emphasize regular exercise routine
Forgetfulness, executive dysfunction can plague action plans
Involve exercise “buddy” who can motivate and help monitor safety
Unlikely primary care provider is talking about exercise so may not seem important to client
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Safety Considerations
Memory impaired individuals should not walk or exercise vigorously alone
Do not walk outside in extreme weather conditions (heat, cold, icy)
People living in neighborhoods with poor safety or walkability will need help brainstorming alternatives (e.g., mall walking)
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Issues: Exercise & Dementia
All roads lead to a caregiver57
Challenges of Exercise for Individuals with Dementia
Reluctance to try new activities
Difficulty learning & remembering to do them
Inability to exercise independently due to safety concerns
Family caregivers lack knowledge about exercise, burdened by daily tasks, physical frailty
58
A • B • Cs Work with Exercise Too!
A CB
A CB
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
59
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Promoting Exercise for Individuals with Dementia
What “exercise” did the person enjoy in the past?
Provide support, assistance, lots of repetition for group programs
Monitor for safety; simplify, avoid or closely supervise use of unfamiliar equipment
Encourage family caregivers to incorporate a daily walk into their routine, and gradually increase the time, distance, and speed of walking
Make physical activity a pleasant event 61
Progress Slowly If needed, start with seated exercises and
progress to standing as they are able
Start with a low number of repetitions, increase by 1-2 repetitions at a time
Begin with a 5 minute walk, increase by 3 - 5 minute intervals as participant is able
Allow rest periods, break the program down over the day
62
Safety Guidelines Initiate exercises at the current level of the individual Supervise closely, guide through the motion, allow the person
to “mirror” your movement Do not force a movement by physically moving the person’s
body Do not bend or twist the back or spine, watch to ensure
individuals do not bend or twist while doing these exercises Omit any exercise the participant is afraid to complete or finds
painful Ensure adequate hydration by providing a “water break” after
exercises are completed, or between the exercises and walking.
Ensure that the client has shoes that are supportive and safe for exercise. 63
It’s been so much help for my dad. It’s made all the difference in the world…. Has made
my life easier as a caregiver. Past few weeks he has said, “I’m going to walk around a little bit.” He will walk around the house. He feels better about getting up and getting around.”
I cannot stress how much this program has helped me. One big improvement I have seen, because of the exercises, is that when we travel mom used to not be able to get up off the toilet. When we travel now she can get up by herself. … Our holidays are
so much better...
64
Things We’ve Learned Along the Way
Exercise programs need to consider coexisting chronic illnesses or physical limitations of both the person with dementia and the caregiver
Some people (including caregivers) don’t like to exercise; caregiver buy-in is critical
Older, less cognitively impaired, and more depressed people are less likely to adhere to exercise plans
Logsdon RG, et al. 2005. Care Manag J, 6: 90-97McCurry SM, et al. 2003. J Am Geriatr Soc, 51: 1455-1460Teri L, et al. 2008. J Nutr Health Aging, 12: 391-394Teri L, et al. 2014. Oxford handbook of clinical geropsychology, pp. 1025-1044Oxford University Press 65
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Establish stable and sufficient sleep routines
Move your body: maintain regular exercise
Find meaning, purpose, and joy in life
3 Practices for Enriching QOL Across the Continuum
Psychological resilienceReduced stress hormone levels and
inflammatory responseEnhanced social networksIncreased longevityOptimistic outlookImproved cardiovascular function“Behavioral compassion”: altruismAcceptance of what cannot be
changedHumor
Creating a work or doing a deed
Experiencing something or encountering someone
Facing hopeless situations with human dignity and grace
Frankl’s Ways to Find Meaning in Life
69V.E. Frankl. (1984). Man’s search for meaning. 3rd edition. New York: Simon & Schuster
Issues: Finding Life Meaning and Joy in Normal Aging
Physical/functional, social, economic, spiritual supports and/or obstacles• Change and loss across domains are the norm
Frankl’s 3 domains – action, love, personal dignity – will play out on that canvas
70
“Is there one thing you will commit to change this week?”“How can I help you get there?”
Issues: Finding Meaning in Life and Joy with MCI
Stigma of cognitive impairment
You are not alone
Education about diagnosis, possible progression, advance planning is essential to restore a sense of control
The Bucket List: What has the client been putting off until tomorrow?
Anxiety and depression often accompany new diagnoses; relaxation/mindfulness training can be very useful
71
Early Stage Memory Loss Seminars
Annual Facilitator Training and UpdateStructured Manual with Outline, Discussion Topics, & Handouts
Session 1 — Introduction and OverviewSession 2 — Coping with Memory ProblemsSession 3 — Medical Update–Diagnosis, Treatment and
ResearchSession 4 — Social and Family RelationshipsSession 5 — Considerations in Daily LivingSession 6 — Legal and Financial Considerations (speaker)Session 7 — Planning for the FutureSession 8 — Health considerations & Review
Alzheimer’s Association Western & Central Washington State Chapter 72
Issues: Finding Meaning in Life and Joy with Dementia
All roads lead to a caregiver73
“If you’ve seen one person with Alzheimer’s disease, you’ve
seen one person with Alzheimer’s disease”
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There are Multiple Perspectives to Every Dementia Story
Person w/ dementia
Caregiver(s)
Clinician(s)
Other key partners
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McCurry, S.M. 2006. When a family member has dementia. New York: Praeger Press
DANCEBuild 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
76
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 77
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.78
“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
79
Nurture yourself:Caregivers Need Care Too
“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
80
View source: orchardafrica.org 81
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
82
Enjoy the Moment:Finding the Gifts of Dementia Care
Laughter and love are good medicine
Pleasant events improve mood and reduce behavior problems
Look for the uplifts: Why are you a caregiver? What does your loved one give back?
83
Depression is a Common Behavior
Medical Interpersonal
Environmental Historical
Depression
84
Medical Causes
Historical
Environmental
Interpersonal
Recurrent depressionFamily history of
psychiatric disordersPast traumas
Brain changes from aging or dementia
Female sexChronic medical illnessStroke/heart diseaseMedicationsPhysical frailtyAlcohol abuseSensory deficitsInsomniaLack of exerciseSeasonal depression (↓light)
Boredom or lonelinessWidowed or divorcedUnwanted role changesLoss of independence
Residential move↓Household incomeStressful life eventsFamily caregiving 85
Relationship between Mood and Pleasant Events
Pleasant events
Mood
Keep adding on those pleasant
events!!!!86
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.
87
A • B • Cs Work with Pleasant Events Too!
A CB
A CB
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
88
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
89
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?90
“ [I want] the right to refuse any activity or program that I don’t
find entertaining. ”
Robert DavisMy Journey into Alzheimer’s Disease, 1989
91
92
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! 93
“If, when we speak to you, we repeat the same things over and over again, do not interrupt us. Listen to us. When you were small, we had to read to you the same story a thousand and one times until you went to sleep…..A Parent’s Wish https://www.youtube.com/watch?v=AGcHzTi7siA
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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. 15th annual Alzheimer’s Association Dementia Care Conference (2007).
©Dan Kauffman
95
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.
Frequency Enjoy
Activity Not At All
1 to 6Times
7 or moreTimes
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
96Logsdon RG, Teri L. Gerontologist 1997; 37(1):40-45
97
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
98
Every interaction can be a pleasant event.
Pleasant events are everyone’s job!
99
“A couple of weeks ago, I was visiting my Mom …. During our conversation, she asked me if she had ever been married. I was stunned. …
So, I went to her room and brought back her wedding picture… I pointed to Dad and said, ‘Mom, there’s your husband’… She stared into the photograph and, exclaimed, “That was my husband?? He’s so handsome!!!” Taking hold of my arm, she looked into my eyes and said: ‘Thank you for telling me that I was married. It makes me so happy to know that someone like that would want me.’
…Even in her dementia, she continues to teach me what matters…”
100
101
Establish stable and sufficient sleep routines
Move your body: maintain regular exercise
Find meaning, purpose, and joy in life
3 Practices for Enriching QOL Across the Continuum
102
Components of Future Personalized Plans?
Bredesen, D.E. et al. 2014. Reversal of cognitive decline: A novel therapeutic program. Aging. September 2014.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4221920/pdf/aging-06-707.pdf
• Optimize diet (reduce inflammation w/ low glycemicindex, low grain)
• Reduce stress• Optimize sleep, treat apnea if present• Exercise• Brain stimulation• GI health (prebiotics/probiotics)• Optimize antioxidants, hormone balance
Linda Teri, Rebecca Logsdon, Susan McCurryCathy Blackburn, Martha Cagley, Amy Cunningham, David LaFazia, Ellen McGough, Cat Olcott, 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 103
104
Appendices
105
1. General educational and audiovisual resources for clients and clinicians
2. Background data from UW evidence-based studies and clinical trials• NITE-AD Sleep in dementia• SPA Exercise in normal older adults• RDAD Exercise in dementia• ESML Early Stage Support Groups• QOL-AD data
General Informational 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)
106
Links to Dementia AudioVisualMaterial
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Best Alzheimer’s videos of 2013http://www.healthline.com/health-slideshow/best-videos-alzheimers
Alzheimer’s Association Interactive Brain Tourhttp://www.alz.org/alzheimers_disease_4719.asp
WebMD Videos related to Alzheimer’s diseasehttp://www.webmd.com/alzheimers/video/video-index
Alzheimer’s Association Research Videos and Media linkshttp://www.alz.org/research/video/alzheimers_videos_and_media_understanding.asp
Alzheimer’s Association YouTube Media Clips/Videoshttp://www.alz.org/norcal/in_my_community_16941.asp
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Drivinghttp://hartfordauto.thehartford.com/UI/Downloads/Crossroads.pdf
Safetyhttp://www.alz.org/national/documents/brochure_stayingsafe.pdf
Personal hygienehttp://www.amazon.com/Understanding-Difficult-Behaviors-suggestions-Alzheimers/dp/0978902009
End of life decision making
Specific Clinical Issue Resources
https://www.alz.org/national/documents/brochure_endoflifedecisions.pdf
Assessing Insomnia History
Daytime activities and impairments: Napping, fatigue, cognitive function, mood
Sleep related practices and environment (“sleep hygiene”)
Longitudinal course General medical history (including
diagnoses of primary sleep disorders) Psychiatric history Medication and substance use Life situation and circumstances (stressors)
Edinger JD et al. Sleep 2004; 27(8):1567-96 (Research Diagnostic Criteria for Insomnia)
Sleep Self-Report QuestionnairesAssessment Domain Instrument
Global sleep Pittsburgh Sleep Quality Index (PSQI)Insomnia symptoms Insomnia Severity Index (ISI)Fatigue Flinders Fatigue Scale (FFS)
Sleepiness Epworth Sleepiness Scale (ESS)Attitudes about sleep Dysfunctional Beliefs About Sleep (DBAS)
scaleSleep-related behaviors Sleep Hygiene Index (SHI)Quality of life SF-36 (includes pain subscale)
Psychological symptoms Patient Health Questionnaire (PHQ-9)Generalized Anxiety Disorder scale (GAD-8)Pre-Sleep Arousal Scale (PSAS)
Undiagnosed primary sleep disorders
Berlin Apnea QuestionnaireRestless legs single question*
*When you try to relax in the evening or sleep at night, do you ever have unpleasant, restless feelings in your legs that can be relieved by walking or movement? (Ferri R. et al. 2007)
Sleep in Dementia RCTs
Active treatments:● Walking only (2011)● Light exposure only (2011)● Combination walking, light, and behavior management education (NITE-AD)
Control:● Educational Contact Control
6 sessions over 8 weeksMMSE 0-30; Mean = 12 (2005), 19 (2011) Assessments at baseline, 2, and 6 months
Funding: NIMH MH01644 and MH072736
McCurry SM, (2011) Increasing walking and bright light exposure to improve sleep in community-dwelling persons with Alzheimer’s disease: Results of a randomized, controlled trial. J Am Geriatr Soc, 59(8):1393-1402.
McCurry SM et al. (2005) Nocturnal Insomnia Treatment and Education for Alzheimer’s Disease (NITE-AD): A randomized controlled trial. J Am Geriatr Soc, 53, 793-802.
112
NITE-AD Study: Sleep Changes in Persons with Dementia, 2005 (n=36)
McCurry, et al. 2005. J Am Geriatr Soc, 53, 793-802.
p = .03
# Awakenings Total Wake Time (mins)
p = .01
0
20
40
60
80
100
120
NITE-AD Control
113
Changes in Participant Total Wake Time at Night (mins), 2011 (n=132)
-25.8-31.6 -32.4
7.4
-7.5
-18.5
-6.1
6.5
-40
-20
0
20
40
Pre-Post Pre-6 Month
WalkingLightNITE-ADControl
(p<.05)McCurry, et al. 2011. J Am Geriatr Soc, 59, 1393-1402. 114
SPA: Social and Physical Activity in (normal) Older Adults
Funded by the National Institute on Aging AG14777
Teri L, McCurry SM, Logsdon RG, Gibbons LE, Buchner DM, Larson EB.(2011). A randomized controlled clinical trial of SPA – the Seattle Protocol for encouraging Social and Physical Activity in older adults. J Am GeriatrSoc, 59(7):1188-1196.
Active treatment:● Group classes: Exercise (aerobic, strength, balance, flexibility) only, Problem-Solving only, EX+PS Combination
Control:● Routine Medical Care
Therapists: Master’s level trainers9-week treatment duration, 4 monthly, 2 quarterly follow-upsAssessments at baseline, 3, 6, 12, and 18 monthsN=273 independently living older adults
Significant exercise effects (EX, EX+PS) at post-test (3-months)
MeasureMean difference
(95% CI)p-value
Primary OutcomesSF-36 Health Status Survey - General Health
Perceptions2.5 (0.4,4.6) .018*
Secondary Outcomes
Self-Rated Health and Health BehaviorsExercise minutes, past week 39.3 (0.2,78.4) .049*Physical Activity Scale for the Elderly –Muscle strength, endurance (scaled score)
0.13 (0.01,0.24) .027
Affective FunctionPerceived Quality of Life 2.3 (0.2,4.4) .030*Psychological General Well-Being Index (PGWB), total score
3.3 (0.3,6.2) .030*
PGWB – Self-Control 1.0 (0.2,1.7) .009*PGWB – Vitality 0.8 (0.0,1.5) .040*
*Significant results maintained at 18 month follow-up
Exercise in Dementia RCTTeri L, Gibbons LE, McCurry SM, Logsdon RG, Buchner D, Barlow W,et al. (2003) Exercise plus behavior management in patients withAlzheimer’s disease: A controlled clinical trial. JAMA, 290(15); 2015-2022.
Funded by the National Institute on Aging AG10845 and AG14777
Active treatment (RDAD):● Home-based exercise – strength, balance, endurance ● Behavior therapy – communication, problem-solving
Control (RMC):● Routine Medical Care
Therapists: Master’s level home health providers (SW & PT)12-week treatment duration, monthly follow-up 4 monthsMMSE 0 to 29; Mean = 17Assessments at baseline, 3, 6, 12, and 24 months
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Change in Percent of Subjects Exercising 60+ Minutes a Week
26
86
3
0
5
10
15
20
25
30
3-Month 12-Month
RDAD
RMC
ITT: Pre-Post <.01
Community-residing AD patientsMean Age = 78Mean MMSE = 1756% exercising 60+ minutes at baseline
118Teri et al. 2003, JAMA, 290(15):2015-2022
10 8
-17
-6
-20-15-10-505
1015
3-month 12-month
Change in Function and Depression
SF-36 Role FunctioningITT: Pre-Post p<.01
-2
-3.2
0.6
-1.6
-4
-3
-2
-1
0
1
3-Month 24-Month
RDADRMC
HDRS for Pts >6 on Cornell at baselineITT: Pre-Post p< .05Longitudinalp=.05
Better
Better
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Change in Residential Status
19%24%
19%18%
27%
50%
-10%
0%
10%
20%
30%
40%
50%
60%
Illness or CognitiveDecline
Increased ADLImpairment
Behavioral Problems
RDAD
RMC
Reasons for residential placement over 24-month follow-up
120Teri et al. 2003, JAMA, 290(15):2015-2022
Early Stage Support Groups• Logsdon RG, McCurry SM, & Teri L (2005). Time limited support groups for
individuals with early stage dementia and their care partners. Clin Gerontol, 30(2), 5-19.
• Logsdon, R.G., Pike, K.C., McCurry, S.M., Hunter, P., Maher, J., Snyder, L., et al. (2010) Early stage memory loss support groups: Outcomes from a randomized controlled clinical trial. J Gerontol: Psychol Sci.
National Alzheimer’s Association (IIRG # 0306319) & National Institute on Aging (R01AG23091-2)
Active treatment:● Early Stage Memory Loss seminar program
Control:● Delayed treatment
Support Group Facilitators: Master’s level social workers9 weekly sessions, participant and care partner attend togetherMMSE 18-30; Mean = 24Assessments at baseline and post treatment (2 months)
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Benefits of Early Stage Groups
0% 5% 10% 15% 20% 25% 30% 35%
Social Support
Information AboutAD
Decreased Isolation
Emotional Support
Legal Information
CommunityResources
Caregiving Advice
Participant Care Partner
Logsdon, et al, 2006. Clin Gerontol 30(2): 5-19. 122
Assessment Tools for Rating Quality of Life in Dementia
Measure Population AdministrationAffect Rating Scale (Lawton, 1996) Nursing Home: Mod to Severe Observation
QOL-D (Albert, 1996) Community: Mild to Severe Family Proxy
DQOL (Brod, 1999) Community: Mild to Mod Self-Report
QOL-AD (Logsdon, 1999) Community: Mild to Mod Self & Proxy
AD-QOL (Black, 2000) Residential Care: Mild to Severe Professional Proxy
QOL-NH (Kane, 2001) Nursing Home Residents Self-Report
Cornell-Brown QOLD (Ready, Ott, 2002)
Community: Mild to Mod Clinician Rating
Dementia Care Mapping (Brooker, 2006)
Residential/Day: Mild to Severe Observation
DEMQOL (Smith, 2005) Community: Mild to Mod Self & Proxy
Observing QOL in Dementia (Fulton, 2006)
Residential/Day: Mild to Severe Observation
Quality Of Life-AD
• Structured interview with diagnosed individual• Caregiver questionnaire• 13 items assessing 4 domains of QOL: physical, psychological,
environmental, behavioral/functional• Good internal reliability (alpha = .86)• Good test-retest reliability (.76 for patient; .92 for caregiver)
Logsdon RG, Gibbons LE, McCurry SM, & Teri L. (1999). Quality of lifein Alzheimer’s disease: Patient and caregiver reports. Journal of MentalHealth and Aging, 5 (1), 21-32.
Funded by: Alzheimer’s Association FSA 95009
ADL’s
QOL-AD Multivariate Associations
MMSE
Caregiver Burden
CaregiverDepression
PWDQOL-AD
(Self)
CGQOL-AD(Proxy)
Participant Depression
PleasantEvents
ParticipantPhysical Function
1 1 2
4
3
6
5
2
3
Logsdon RG, et al. 1999. J Ment Health Aging, 5(1): 21-32 125
Logsdon RG, Teri L. 1997. Gerontologist , 37(1):40-45
