Susan Haller, MSW, RSW

Social Work Professional Leader

Community Rehab

Kate Power, MSW, RSW

Director, South West Region

Community Rehab

'PLAYING THE GAME' IS AMULTI-LAYERED METAPHOR

IT DEMONSTRATES THE PROGRESSION OF DEMENTIA, YOUR UNDERSTANDING OF THE ILLNESS AND THE PROCESS OF DECISION-

MAKING.WHO ARE THE PLAYERS?

THE CLIENT AND THE CAREGIVER IS THE PINCH-HITTER WHEN THE CLIENT CAN NO

LONBGER PLAY

WHAT IS HOME PLATE (WHERE YOU ARE AT)?

THE PITCHES FROM THE MOUND ARE DEMENTIA (YOU MAY NOT SEE WHAT IS COMING AT YOU)

HOME PLATE WILL LOOK DIFF’T DEPENDING ON THE CAREGIVER, THEIR VALUES, THEIR RESILIENCE, THEIR STRENGTHS, THEIR UNDERSTANDING OF DEMENTIA AND NEEDS OF LOVED ONE

IF WE DON’T FOCUS ON EMPOWERING AND CARING FOR CLIENTS/ CAREGIVERS, THERE WILL BE GREAT PERSONAL AND FINANCIAL COSTS TO THE SYSTEM. (WE’RE STRIKING OUT AND LOSING FANS)

KEY MESSAGE #1

WE NEED TO EDUCATE, SUPPORT, AND ENCOURAGE SELF ADVOCACY OF THE CLIENT/ CAREGIVER IN ORDER FOR THEM TO BE EFFECTIVE DECSION MAKERS. ( PLAYERS THAT CAN HIT A HOME RUN)

KEY MESSAGE #2

INTERVENTIONS NEED TO BE EARLY AND CONTINUOUS THROUGHOUT THE DEMENTIA PROCESS IN ORDER TO AVOID CRISIS (STRIKING OUT) AND TO SUSTAIN BOTH THE CAREGIVER AND THE PERSON WITH DEMENTIA. (PLAYING A GOOD GAME)

KEY MESSAGE #3

SOME IMPORTANT STATISTICS TO FRAME OUR CONVERSATION:

IN 2007 AN ESTIMATED 97,000 CANADIANS WILL DEVELOP ALZHEIMER’S OR A RELATED

DISEASE (59,340 WOMEN; 37,870 MEN)

AN ESTIMATED 450,000 CANADIANS OVER 65 HAVE ALZHEIMERS OR A RELATED

DISEASE (305,800 WOMEN; 141,000 MEN).

BY 2011 IT IS ESTIMATED THAT THERE WILL BE 111,430 NEW CASES OF DEMENTIA PER

YR.

BY 2031 OVER ¾ MILLION CANADIANS ARE EXPECTED TO HAVE ALZHEIMER’S

OR A RELATED DISEASE

WOMEN ACCOUNT FOR OVER 2/3 OF ALL THOSE OVER 65 WITH THE DISEASE

CURRENTLY THERE ARE MORE THAN 24 MILLION PEOPLE IN THE WORLD

WITH DEMENTIA. THIS IS ESTIMATED TO RISE TO 81 MILLION BY THE YEAR

2040.

COSTS OF DEMENTIA IN CANADA

$5.5 BILLION DOLLARS A YEAR IS SPENT ON PERSONS WITH DEMENTIA

THE ANNUAL COST OF CARE PER INDIVIDUAL WITH DEMENTIA IS

ESTIMATED TO BE: $36,794 FOR SEVERE DISEASE, $25,724 FOR

MODERATE DISEASE, $16,054 FOR MILD TO MODERATE DISEASE, $9,451

FOR MILD DISEASECOSTS ARE BASED ON USE OF NURSING HOME CARE, USE OF

MEDICATIONS, AND USE OF COMMUNITY SUPPORT SERVICES, BY

CAREGIVERS, AND UNPAID CAREGIVER TIME.

PROFILE OF THE CAREGIVER

50% OF PEOPLE IN CANADA WITH DEMENTIA LIVE IN THE COMMUNITY AND 50% LIVE IN

INSTITUTIONS (VARIES ACROSS THE PROVINCES)

OF THE 50% WHO LIVE IN THE COMMUNITY, 97% OF THESE PEOPLE HAVE A CAREGIVER

30% OF INFORMAL CAREGIVERS IN THE COMMUNITY ARE EMPLOYED

OVER 70% OF INFORMAL CAREGIVERS ARE WOMEN, MOST OFTEN WIVES (24%) OR ADULT

DAUGHTERS (29%).

½ OF THE INFORMAL CAREGIVERS ARE OVER AGE 60; 36% ARE OVER

THE AGE OF 70

40% OF THOSE CARING FOR SOMEONE WITH MODERATE

DEMENTIA IN THE COMMUNITY REPORT SYMPTOMS OF

DEPRESSION.

USE OF COMMUNITY SERVICES

CAREGIVERS OF THOSE WITH DEMENTIA USE FEWER SERVICES THAN CAREGIVERS OF

PEOPLE WITHOUT DEMENTIA

ONLY 3.4% OF CAREGIVERS USE RESPITE CARE

SPOUSE-CAREGIVERS USE FEWER SUPPORT SERVICES THAN SONS AND DAUGHTERS

GREATER ACCESS TO EFFECTIVE PROGRAMS OF COUNSELLING AND SUPPORT COULD YIELD

CONSIDERABLE BENEFITS FOR CAREGIVERS AND THOSE WITH DEMENTIA.

CAREGIVERS CAN BE ASSESSED FOR THEIR ABILITY TO MAKE EFFECTIVE

DECISIONS BY THEIR LEVEL OF READINESS:

AVOIDERS: THOSE WHO PUT OFF MAKING DIFFICULT DECISIONS

COMPLAINERS: THOSE WHO SEEK SUPPORT THROUGH VOICING THE IMPACT OF THEIR

BURDENCONSUMERS: THOSE WHO ARE READY TO

MAKE A DECISION AND ARE IN NEED OF INFORMATION TO DO SO OR WISH TO

CONSULT TO UNDERSTAND THE IMPACT OF THEIR DECISION ON THEM, THEIR LOVED

ONE, AND OTHERS

RECAPAS THE RATE OF DEMENTIA INCREASES COSTS WILL CONTINUE TO ESCALATE EXPONENTIALLY

THE COSTSOF DEMENTIA, BOTH EMOTIONAL AND FINANCIAL ARE HIGH FOR CLIENT, CAREGIVER AND THE HEALTH SYSTEM

THE MAJORITY OF CAREGIVERS ARE ELDERLY WITH MULTIPLE ROLES AND RESPONSIBILITIES

CAREGIVERS MAY EXPERIENCE DEPRESSION AS A RESULT OF CAREGIVING ROLES

CAREGIVERS ARE NOT ACCESSING RESOURCES / SUPPORTS AS WELL AS THEY COULD BE.

SEVEN STAGES OF ALZHEIMER DISEASE (1982 REISBERG,B.)

STAGE 1

NO MEMORY DEFICIT IN EVIDENCENEED: PUBLIC EDUCATION OF SIGNS AND

SYMPTOMS, ADDRESS CAREGIVER STRESS

STAGE 2

SUBJECTIVE COMPLAINTS OF MEMORY DEFICITS.NEED: ASSISTANCE TO RECOGNIZE THE PROBLEM.

SUPPORT COMMUNICATION WITH PHYSICIAN

STAGE 3

WORD AND NAME FINDING DEFICITS, FORGETFULNESS, CONCENTRATION

AFFECTED

NEEDS:DIAGNOSIS, LEGAL AND FINANCIAL PLANNING, SUPPORT FOR CAREGIVIERS

STAGE 4

DECREASED ABILITY TO RECALL RECENT EVENTS, TO ORINET AND TO PERFORM

COMPLEX TASKSNEED: EFFECTIVE COMMUNICATION

STRATEGIES, BREAKDOWN OF COMPLEX TASKS, SAFETY STRATEGIES, CAREGIVER

SUPPORT

STAGE 5

ASSISTANCE WITH ACTIVITIES OF DAILY LIVING REQUIRED

NEEDS: LINK TO DAY PROGRAMS, ACTIVATION, RESPITE CARE,

CAREGIVER MAY BECOME “CAREER CAREGIVER”

STAGE 6

ASSISTANCE WITH ADL’S REQUIRED AND PERSONALITY CHANGES.

NEED: MAY HAVE A CIRISIS, EXPLORING ALTERNATIVE CARE OPTIONS, CAREGIVER MAY REDEFINE THEIR ROLE AS PRIMARY CAREGIVER WHO COACHES ALL PLAYERS TO BECOME PARTNERS IN CARE.

STAGE 7

THE BRAIN IS NO LONGER ABLE TO TELL THE BODY HOW TO FUNCTION

NEED: QUALITY OF LIFE PORVIDED “IN THE MOMENT”. CAREGIVERS NEED TO UNDERSTAND WHAT STRENGTHS REMAIN.

HOW TO EMPOWER CAREGIVERS (TEACH THEM TO PLAY THE GAME)

EARLY INTERVENTION – GET INVOLVED AT THE DIAGNOSTIC STAGE

ENHANCE KNOWLEDGE BASE (OF THE DISEASE, MANAGEMENT STRATEGIES, AND

RESOURCES AVAILABLE)

TEACH ADVOCACY SKILLS (MAY TAKE TIME BECAUSE OF AGE OF CAREGIVERS, LACK OF

CONFIDENCE, KNOWLEDGE, PRACTICE, FAMILY DYNAMICS, AND RELUCTANCE TO ASK

FOR HELP)

     PROVIDE SUPPORT THROUGH THE PROCESS (COACHING) TO NAVIGATE

THROUGH A FRAGMENTED SYSTEM UNTIL THERE IS ENHANCED SYSTEM COORDINATION

ENGAGE EXTRA SUPPORTS (COACHES, I.E., FRIENDS, FAMILY, COMMUNITY PROVIDERS,

COMMUNITY SUPPORT SERVICEDS, NEIGHBOURS, ETC)

CASE STUDY

2 FAMILIES WITH BOTH PARENTS WITH DEMENTIA

LIVING AT CHILDREN’S HOME

THE DIFFERENCES IN HOW THEY “PLAYED THE GAME”

1st Base

Home Plate

3rdBase

2nd Base

dementia

Early stage – contact with community services & agencies to assess the landscape. Counselling for anticipatory grief & loss (both/all). Learn what IS manageable

Day programs, respite, in-home support, use of extended health benefits to support needs, family friends to maximize support and minimize risk for both client & caregiver

Max in-home supports may or may not be enough. May be considering LTCH.Engage family & friends – how? By specifying what you need. Be concrete

Good informed decision-making throughout the progression of

illness

Every time we step up to the plate, the plate may look a little different cause we don’t know what pitch (diseawse progression) will be coming at us.

REFLECTIONS

ONE OF BIGGEST CHALLENGES IS MOBILIZING CAREGIVERS/FAMILIES TO ACCESS THE RESOURCES IN THE FIRST

INNINGIT SPEAKS TO THE NEED FOR CONTINUOUS

COACHES