A Holistic Approach to Increase Engagement Among Staff, Family, and Residents in Memory Care

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.

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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.

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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!

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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