A HOLISTIC APPROACH TO INCREASE ENGAGEMENT AMONG STAFF, FAMILY, AND RESIDENTS IN MEMORY CARE
…..AND WHY DOES IT MATTER?
Sar v Devaraj, PhD Fr e d V. D u d a C h a i r P r o f e s s o r University of Notre Dame Founder C a r e x Te c h , I n c . sdevaraj@nd.edu Presented at ALFA 2015 National Conference Tampa, FL 1
A LITTLE WARM-UP EXERCISE
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PROGRAM DESCRIPTION S e n i o r h o u s i n g c o m m u n i t i e s m u s t t a ke a p r o a c t i ve a p p r o a c h to m i n i m i z e r e s i d e n t s ’ m e m o r y l o s s w h i l e e n r i c h i n g t h e i r l i ve s . This session will examine: 1 . The current state of memor y care in a typical senior housing setting, 2. How proactive engagement slows the progression of memor y deterioration 3 . H o w a n i n t e g r a t e d a n d h o l i s t i c a p p r o a c h to m e m o r y c a r e i n c r e a s e s s t a f f , r e s i d e n t a n d family satisfaction. E n g a g e d f a m i l y m e m b e r s a r e a k ey p a r t o f s l o w i n g t h e p r o c e s s o f m e m o r y d e t e r i o r a t i o n . S o m e f a m i l y m e m b e r s m ay l i v e c l o s e e n o u g h f o r r e g u l a r v i s i t s , b u t m a ny f a m i l y members are geographically spread. S t a f f a n d a d m i n i s t r a to r s c a n e n g a g e w i t h r e s i d e n t s o n a h i g h e r l e v e l b y e n c o u r a g i n g f a m i l y m e m b e r s to s u b m i t s to r i e s , a c h i e v e m e n t s , i n t e r e s t s a n d o t h e r b i o g r a p h i c a l information. Designed for an intermediate-level audience. 3
INTRODUCTION AND OUTLINE Introduction “Give one, Get a Bunch” Setting the Stage: Memory Care and Senior Living Engagement and the Triad: Family, Caregiver, Resident Contemporary Approaches STAR: An Approach to Memory Care Technology to Empower the Human Touch Summary: Final Thoughts, Comments and Questions
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GIVE ONE - GET A BUNCH!
Index cards at your seat for sharing an INNOVATIVE ENGAGEMENT IDEA . This idea can be something you have implemented; or an idea that you would like to see implemented. Af ter the talk I will collect the cards and in the next 10 days I will compile them into a document and share ALL of the ideas with you via an email. The next slide explains what you need to do to par ticipate.
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GIVE ONE - GET A BUNCH! Side #1: Your Your Your Your Your
name* title* organization* phone* email*
(Please note that this information will be included in the document that I send you, so another p a r t i c i p a n t i n t e r e s t e d i n y o u r i d e a c a n c o n t a c t y o u d i r e c t l y. I f t h i s i n f o r m a t i o n i s m i s s i n g , your idea will not be included in the list and you won’t receive a copy of the document.)
Side #2: A brief explanation of the INNOVATIVE ENGAGEMENT IDEA
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SETTING THE STAGE: MEMORY CARE AND SENIOR LIVING According to the National Alzheimer’s Association, at least half of the residents in long-term care suf fer from dementia. From 2000 to 2010, there was a 68 percent increase in deaths from Alzheimer’s, while deaths from other major diseases, including hear t disease, decreased. Approximately 1 in 3 seniors will die from some form of dementia
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ONGOING CHALLENGES
M E M O R Y C A R E C E R T I F I C AT I O N J O I N T C O M M I S S I O N I S S U E D C R I T E R I A F O R C E R T I F I C AT I O N W H I C H I N C L U D E S “ E N G A G I N G M E A LT I M E , S O C I A L A N D R E C R E AT I O N A L E X P E R I E N C E S D E S I G N E D F O R R E S I D E N T S W I T H D E M E N T I A T H AT I N C L U D E FA M I L I E S A N D O P P O R T U N I T I E S F O R I N T E R G E N E R AT I O N A L A C T I V I T I E S ” L I K E LY T O S E E M O R E E M P H A S I S AT S TAT E L E V E L F O R S K I L L E D C A R E , B U T A L S O AT L O W E R C A R E L E V E L S ( A L , E T C . ) E V E N I N U N L I C E N S E D M AY B E M O R E U N D E R S TA N D I N G O F T H E N E E D F O R D E S I G N I N G S P E C I F I C A L LY F O R D E M E N T I A A S S I S T E D L I V I N G C O M M U N I T I E S - AV E R AG E AG E E N T E R I N G A L 8 5 A N D A B O U T 4 0 % H A V E S O M E M E A S U R A B L E M E M O R Y I M PA I R M E N T 8
MEMORY CARE: A CONTINUUM
Cognitive Aging Dementia(s) Alzheimer’s Clinical Dementia Rating (CDR) - 5 Stages
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A VE RY R E A L A N D P E R S O N A L I S S U E T H AT A F F E C T S A LL O F U S
A N A LZ H E I M E R ’ S E X P E R I M E N T: VI D E O
http://www.upwor thy.com/he-was-fed-up-with-his-mom-so-he-triedan-experiment-af ter-it-ended-he-star ted-sobbing?c=ufb2
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ENGAGEMENT AS A STRATEGY
Holleran Feb 2015 Insight Poll
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SOME EVIDENCE OF ENGAGEMENT
Before
After
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THE MORE DIFFICULT QUESTIONS‌
What do communities mean by engagement? What is the basis of engagement?
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CONSEQUENCES If engaging experiences DON” T take place in residential care, more elderly will progress to advanced stages of dementia requiring more costly care. Study showed 2/3 of AL residents had Dementia and 1/3 had psychiatric disorder s such as depression, anxiety or psychosis. Tip of the iceberg ? This also leads to the conclusion that ALL residents need engaging experiences to slow progression of dementia and give good quality of life. 14
THE TRIAD: FAMILY, CAREGIVER, RESIDENT
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PUTTING ENGAGEMENT TO WORK
L ife Stories of Residents A ctivities Trigger Events M emorable Moments M edia: Pictures, Music, Video C onversations 16
LIFE STORIES OF RESIDENTS
Captureing richly detailed stories can help in several ways: Design resident-centric activities Use trigger events in providing care Empower Reminiscing Validation 17
ACTIVITIES ● Engage residents’ intellectual, emotional and thought-process aspects and preferably all day long, not just during “activity hour” ● Adjust level of suppor t provided for the activities ● Several activities should be based on Life Stories of residents ● Keep a log of par ticipation and engagement and correlate to well-being; what works for one person might not for the other ● BALANCED: Life enrichment activites focused on one of more aspects - Physical, Social, Cognitive, Spiritual 18
TRIGGER EVENTS
Trigger events are memorable incidents that can bring a quantum change in a resident’s behavior when discussed with him Often times these are deeply buried in the minds and psyche of the resident Family can provide a details about these 19
MEMORABLE MOMENTS
One of the best ways to make yourself happy in the present is to recall happy times from the past. Photos are a great memory -prompt, and because we tend to take photos of happy occasions, they weight our memories to the good. Gretchen Rubin
Media: Pictures, Music, Video 20
CONVERSATIONS
A conversation is like a... - a good friend - a cognitive exercise - a social boost - a secure feeling 21
CONTEMPORARY APPROACHES: QUICK REVIEW
Music and Memory Care Validation Therapy Habituation Therapy DICE Model Best Friends The Eden Alternative 22
MUSIC AND MEMORY CARE Music, at its essence, is what gives us memories. And the longer a song has existed in our lives, the more memories we have of it . S tev i e Wo n d e r Alive Inside! https://www.youtube.com/watch?v=8HLEr-zP3fc
https://www.youtube.com/watch?v=U8TsAh-zYFI musicandmemory.org 23
VALIDATION THERAPY Naomi Feil’s pathbreaking ef for ts - is a method of communicating with disoriented seniors - based on empathy and enhances dignity - 3 basic pieces - classifying behavior into 4 progressive stages (malorientation, time confusion, repetitive motion, and vegetation) - based on empathy and respects/values seniors without judgment - includes specific techniques geared to the individual Video: Gladys Wilson and Naomi Fell
h t t p s : / / w w w. yo u t u b e . c o m / wa t c h ?
v = C r Z X z 10 F c V M & n o r e d i r e c t = 1 vfvalidation.org 24
HABILITATION THERAPY The therapy is designed “to promote a positive emotion in a person with dementia, focusing on their strengths and minimizing limitations,” Communication. Words, body language and nonverbal communication become increasingly important. The physical environment. “We really think about and talk about the importance of, the influence of, the physical environment.” The approach to personal care—“really keeping the person with dementia in the middle and the focus in terms of our approach to care.” Purposeful and meaningful engagement throughout the day—“giving the person with dementia a sense of purpose and belonging.” Behavior as communication. When speaking is difficult, behavior becomes the way to communicate. Caregivers use a “behavior log” of sorts to identify behaviors and internal or external triggers to behaviors that need to be responded to.
Audience par ticipation - Case studies Aging in Action, Volume 26, Number 24, Fall 2011
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DICE MODEL Based on research from University of Michigan and Johns Hopkins University Describe Investigate Create Evaluate Journal of the American Geriatrics Society, April 2014 by Kales, Gitlin and Lyketsos 26
BEST FRIENDS ● Viriginia Bell and David Troxel ● Staff member who empathizes with their situation, remains loving and positive, and is dedicated to helping the person feel safe, secure and valued ● Person with dementia needs a friend (a best friend) ● Conceptual overlap with Validation approaches bestfriendsapporach.com 27
THE EDEN ALTERNATIVE
Addresses 3 states of human condition: Loneliness, Boredom, and Helplessness 7 Primary Domains of Well-Being: Identity, Growth, Autonomy, Security, Connectedness, Meaning, Joy Care Partner Teams work in collaborative partnership www.edenalt.org 28
A LIFO MODEL (LAST IN FIRST OUT)
Memories are last in, first out.. So older memories are often the bridge Talk to them using their name Talk to them about their school days 29
DISCUSSION OF THE APPROACHES
The research leads to specific types of interventions and life-enriching activities that engage the resident. Audience experiences ?
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GIVE ONE - GET A BUNCH! Index cards at your seat for sharing an INNOVATIVE ENGAGEMENT IDEA. This idea can be something you have implemented; or an idea that you would like to see implemented . After the talk, I will collect the cards and in the next 10 days I will compile them into a document and share ALL of the ideas with you via an email.
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STAR FRAMEWORK: HOLISTIC
S ocialization T rigger events A ctivity balance R eminiscence 32
STAR FRAMEWORK: S ocialization J o h n s H o p k i n s r e s e a r c h p o i n t s to m e a n i n g f u l o r g a n i z e d s o c i a l a c t i v i t i e s c o u l d s to p , a n d i n m a l e s a c t u a l l y r eve r s e , d e c l i n e s i n vo l u m e i n r e g i o n s o f t h e b r a i n v u l n e r a b l e to d e m e n t i a .
T rigger events I d e n t i f y m e n t a l s w i t c h e s t h a t c a n c h a n g e b e h av i o r o f r e s i d e n t s
A ctivity balance S t u d i e s s h ow s t h a t i t ' s t h e va r i e t y o f a n e l d e r l y p e r s o n ' s l e i s u r e a n d p hy s i c a l a c t i v i t i e s a n d n o t t h e i n te n s i t y o f t h e a c t i v i t y t h a t m ay h e l p r e d u c e t h e r i s k o f d e m e n t i a , a c c o r d i n g to a n ew s t u d y.
R eminiscence E n c o u r a g i n g r e s i d e n t s to r e m i n i s c e l e a d s to p o s i t i ve o u t c o m e s 33
OPERATIONALIZING THE MODELS Major Challenges: Information Caregiver Documenting --- Analytics
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ENTER TECHNOLOGY: EMPOWERING THE HUMAN TOUCH IN MEMORY CARE Bringing the Life Story of the resident to life Capturing Music and Pictures Monitoring Activities and Engagement Bringing families/extended families into the equation Cognitive assessments (e.g. MMSE) 35
ACTIVIT Y ENGAGEMENT (GRAPHS) So….here are ways that you could measure – once you’re capturing data
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ACTIVIT Y ENGAGEMENT (ANALY TICS) Detecting a trend
Ac#vity Type1
Social
Jan
Feb
Mar
Apr
May
Jun
Jul
Aug
12
23
11
14
12
13
14
Spiritual
6
5
9
6
5
4
5 15
Cogni9ve
15
15
15
15
18
1
8
Physical
22
25
24
21
19
21
20
Sep
Oct
Nov
Dec
Totals
Ave/Mon
15
16
14
12
14
170
14
8
5
4
5
6
68
6
19
19
16
14
170
14
15
12
11
11
219
18
18
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ACTIVIT Y ANALY TICS A picture tells the story Activity Trend 30 25 20 15 10 5 0 Jan
Feb
Mar
Apr Social
May
Jun Spiritual
Jul Cognitive
Aug
Sep
Oct
Nov
Dec
Physical
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USING TECHNOLOGY: SPECIFICALLY LIFE STORIES
Traditional: Interview with Mom Technology Enabled: Contributions from family, extended family (with video, pictures, music!)
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MOM TELLS LIFE STORY (FROM INTERVIEW) LIFE STORY
I like cooking I enjoy music I enjoy walking the garden sometimes
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ENGAGED FAMILY TELLS LIFE STORY Daughter Suzie:
Son John:
Daughter Amanda:
She travelled all the way to Ireland to attend a Springsteen concert!
Mom won the Best Pie contest in the State Fair 4 times in a row!
Niece Jane: She used to write recipes for Good Housekeeping magazine and taught me everything I know about cooking
She was the lead singer for the Church choir
Grandchild Emily: Grandma makes the best pumpkin spice cookies in the world! 41
THE TRIAD: FAMILY, CAREGIVER, RESIDENT
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THE RESULTS
Family engagement enabled by technology - benefits the community, as well as the resident
Resident care more person-centered - better outcomes
Families are more connected - greater satisfaction and positive word of mouth 43
THE MODEL
Rich Life Story -Enriched by family/friends -Enabled by technology
STAR
Better Outcomes
-Socialization -Trigger Events -Activity Balance -Reminisce
-Cognitive wellbeing -Activity Participation -MMSE -Moods
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SUMMARY Put your final touches of - “Give one, Get a Bunch” Setting the Stage: Memory Care and Senior Living Engagement The Triad - Family, Caregiver, Resident Contemporary Approaches STAR: An Approach to Memory Care Technology to Empower the Human Touch Summary: Final Thoughts, Comments and Questions 45
IF I GET DEMENTIA ... If I get dementia, I want my friends and family to embrace my reality. If I think my spouse is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it. If I get dementia, ask me to tell you a stor y from my past. If I get dementia, make sure I always have my favorite music playing within ear shot. If I get dementia, remember that I am still the per son you know and love. Rachel Wonderlin’s blog 46
SEEKING RESEARCH PARTNERS: Sarv Devaraj, PhD Fred V. Duda Chair Professor University of Notre Dame Founder CarexTech, Inc. Innovation Park at Notre Dame
sdevaraj@nd.edu 47