S ar v Devara j , P h D

Fre d V. Duda Cha i r P ro fe sso r Un i ve r s i t y of Notre Dame

Founde r C arex Te c h , Inc .

s devara j@ nd . e du

1

A HOLISTIC APPROACH TO INCREASE ENGAGEMENT AMONG STAFF, FAMILY, AND RESIDENTS

IN MEMORY CARE

…..AND WHY DOES IT MATTER?

Presented at ALFA 2015 National Conference Tampa, FL

2

A LITTLE WARM-UP EXERCISE

PROGRAM DESCRIPTION

Senior housing communit ies must take a proact ive approach to minimize res idents ’ memor y loss whi le enr ich ing thei r l i ves .

Th is sess ion wi l l examine :

1 . The cur rent s tate o f memor y care in a typ ica l sen ior hous ing set t ing , 2 . How proact ive engagement s lows the progress ion of memor y deter io rat ion 3 . How an in tegrated and ho l i s t i c approach to memor y care increases s taf f , res ident and

fami ly sat is fact ion .

Engaged fami ly member s are a key par t o f s lowing the process o f memor y deter io rat ion . Some fami ly member s may l i ve c lose enough for regu lar v is i ts , but many fami ly member s are geographica l l y spread .

Staf f and admin is t rator s can engage wi th res idents on a h igher leve l by encourag ing fami ly member s to submit s tor ies , ach ievements , in terests and other b iographica l in format ion .

Des igned for an in termediate - leve l aud ience .

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

4

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 l ike to see implemented.

Af ter the talk I wi l l col lect the cards and in the next 10 days I wi l l compile them into a document and share ALL of the ideas with you via an email .

The next sl ide explains what you need to do to par t icipate.

5

GIVE ONE - GET A BUNCH!

Side #1:

  Your name*   Your title*   Your organization*   Your phone*   Your email*

( P le as e note t ha t t h i s i n fo rm at ion w i l l be inc lude d in t he docum e nt t ha t I s e nd you , s o anot he r pa r t i c ipant in te re s te d in your i de a can cont ac t you d i re c t l y. I f t h i s i n fo rm at ion i s m is s ing , you r i de a w i l l no t be inc lude d in t he l i s t and you won ’ t re ce i ve a copy o f t he docume nt . )

Side #2: A brief explanation of the INNOVATIVE ENGAGEMENT IDEA

6

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 suffer from dementia.

  From 2000 to 2010, there was a 68 percent increase in deaths from Alzheimer’s, while deaths from other major diseases, including heart disease, decreased.

  Approximately 1 in 3 seniors will die from some form of dementia

7

ONGOING CHALLENGES

8

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 FO 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 AG 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 FO 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 FO R I N T E R G E N E R AT I O N A L AC 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 FO R S K I L L E D C A R E , B U T A L S O AT LO 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 FO R D E S I G N I N G S P E C I F I C A L LY FO 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 AV 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

MEMORY CARE: A CONTINUUM

Cognitive Aging Dementia(s) Alzheimer’s

Clinical Dementia Rating (CDR) - 5 Stages

9

AN ALZHEIMER’S EXPERIMENT: VIDEO

http://www.upworthy.com/he-was-fed-up-with-his-mom-so-he-tried-an-experiment-after-it -ended-he-started-sobbing?c=ufb2

10

A VERY REAL AND PERSONAL ISSUE THAT AFFECTS ALL OF US

ENGAGEMENT AS A STRATEGY

11

Holleran Feb 2015 Insight Poll

12

SOME EVIDENCE OF ENGAGEMENT

After Before

THE MORE DIFFICULT QUESTIONS…

What do communities mean by engagement?

What is the basis of engagement?

13

CONSEQUENCES

  I f engaging experiences DON”T take place in residential care, more elderly wi l l progress to advanced stages of dementia requir ing more costly care.

  Study showed 2/3 of AL residents had Dementia and 1/3 had psychiatr ic disorders 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 l i fe.

14

THE TRIAD: FAMILY, CAREGIVER, RESIDENT

15

PUTTING ENGAGEMENT TO WORK

 Life Stories of Residents  Activities  Trigger Events  Memorable Moments  Media: Pictures, Music, Video  Conversations

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 support provided for the activities ●  Several activities should be based on Life Stories of residents ●  Keep a log of participation 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 . Stev ie Wonder

Alive Inside! https://www.youtube.com/watch?v=8HLEr-zP3fc

https://www.youtube.com/watch?v=U8TsAh-zYFI

23

musicandmemory.org

VALIDATION THERAPY

Naomi Feil ’s pathbreaking ef forts -  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 ht tps ://www.youtube.com/watch?v=CrZXz10FcVM&noredirect=1

24

vfvalidation.org

HABILITATION THERAPY

The therapy is designed “to promote a positive emotion in a person with dementia, focusing on their strengths and minimizing l imitations,”

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 participation - Case studies

25

Aging in Action, Volume 26, Number 24, Fall 2011

DICE MODEL

Based on research from University of Michigan and Johns Hopkins University

 Describe

 Investigate

 Create

 Evaluate

26

Journal of the American Geriatrics Society, April 2014 by Kales, Gitlin and Lyketsos

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

27

bestfriendsapporach.com

THE EDEN ALTERNATIVE

28

www.edenalt.org

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

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 ?

30

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.

31

STAR FRAMEWORK: HOLISTIC

 Socialization

 Trigger events

 Activity balance

 Reminiscence

32

STAR FRAMEWORK:

Socialization Johns Hopkins research points to meaningful organized socia l act iv i t ies could stop,

and in males actual ly reverse , decl ines in vo lume in regions of the bra in vulnerable to dement ia .

Trigger events Ident i fy mental switches that can change behavior of res idents

Activity balance Studies shows that i t ' s the var iety of an e lder ly person's le isure and phys ical

act iv i t ies and not the intensi ty of the act iv i ty that may help reduce the r isk of dement ia , according to a new study.

Reminiscence Encouraging res idents to reminisce leads to posi t ive outcomes

33

OPERATIONALIZING THE MODELS

Major Challenges:

Information

Caregiver

Documenting --- Analytics

34

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

36

ACTIVIT Y ENGAGEMENT (ANALY TICS)

Detecting a trend

37

Ac#vity  Type1   Jan   Feb   Mar   Apr   May   Jun   Jul   Aug   Sep   Oct   Nov   Dec   Totals   Ave/Mon  

Social   12   23   11   14   12   13   14   15   16   14   12   14   170   14  

Spiritual   6   5   9   6   5   4   5   8   5   4   5   6   68   6  

Cogni9ve   15   15   15   15   18   1   8  

15  

19   19   16   14   170   14  

Physical   22   25   24   21   19   21   20   18   15   12   11   11   219   18  

38

ACTIVIT Y ANALY TICS

0

5

10

15

20

25

30

Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov Dec

Activity Trend

Social Spiritual Cognitive Physical

A picture tells the story

USING TECHNOLOGY: SPECIFICALLY LIFE STORIES

Traditional: Interview with Mom

Technology Enabled: Contributions from family, extended family (with video, pictures, music!)

39

MOM TELLS LIFE STORY (FROM INTERVIEW)

40

I like cooking I enjoy music

LIFE STORY

I enjoy walking the garden sometimes

ENGAGED FAMILY TELLS LIFE STORY

41

Mom won the Best Pie contest in the State Fair 4 times in a row!

Daughter Suzie:

Son John:

She travelled all the way to Ireland to attend a Springsteen concert!

Niece Jane:

She used to write recipes for Good Housekeeping magazine and taught me everything I know about cooking

Grandchild Emily:

She was the lead singer for the Church choir

Daughter Amanda:

Grandma makes the best pumpkin spice cookies in the world!

THE TRIAD: FAMILY, CAREGIVER, RESIDENT

42

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

44

THE MODEL

Rich Life Story STAR Better

Outcomes

-Enriched by family/friends -Enabled by technology

-Socialization -Trigger Events -Activity Balance -Reminisce

-Cognitive wellbeing -Activity Participation -MMSE -Moods

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 fr iends and family to embrace my real ity. I f I

think my spouse is st i l l al ive, or i f I think we’re visit ing my parents for

dinner, let me bel ieve those things. I ’ l l be much happier for i t .

I f I get dementia, ask me to tel l you a story from my past.

I f I get dementia, make sure I always have my favorite music playing within

earshot.

I f I get dementia, remember that I am sti l l the person you know and love.

46

Rachel Wonderlin’s blog

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