2. Susan Haller, MSW, RSW Social Work Professional Leader Community Rehab Kate Power, MSW, RSW Director, South West Region Community Rehab

3. '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

4. 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

5. 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

6. 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

7. 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

8. 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.

9. 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.

10. 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 DISEASE COSTS ARE BASED ON USE OF NURSING HOME CARE, USE OF MEDICATIONS, AND USE OF COMMUNITY SUPPORT SERVICES, BY CAREGIVERS, AND UNPAID CAREGIVER TIME.

11. 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%).

12. 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.

13. 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.

14. 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 BURDEN CONSUMERS: 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

15. RECAP AS 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.

16. SEVEN STAGES OF ALZHEIMER DISEASE (1982 REISBERG,B.) STAGE 1 NO MEMORY DEFICIT IN EVIDENCE NEED: PUBLIC EDUCATION OF SIGNS AND SYMPTOMS, ADDRESS CAREGIVER STRESS

17. STAGE 2 SUBJECTIVE COMPLAINTS OF MEMORY DEFICITS. NEED: ASSISTANCE TO RECOGNIZE THE PROBLEM. SUPPORT COMMUNICATION WITH PHYSICIAN

18. STAGE 3 WORD AND NAME FINDING DEFICITS, FORGETFULNESS, CONCENTRATION AFFECTED NEEDS:DIAGNOSIS, LEGAL AND FINANCIAL PLANNING, SUPPORT FOR CAREGIVIERS

19. STAGE 4 DECREASED ABILITY TO RECALL RECENT EVENTS, TO ORINET AND TO PERFORM COMPLEX TASKS NEED: EFFECTIVE COMMUNICATION STRATEGIES, BREAKDOWN OF COMPLEX TASKS, SAFETY STRATEGIES, CAREGIVER SUPPORT

20. STAGE 5 ASSISTANCE WITH ACTIVITIES OF DAILY LIVING REQUIRED NEEDS: LINK TO DAY PROGRAMS, ACTIVATION, RESPITE CARE, CAREGIVER MAY BECOME “ CAREER CAREGIVER ”

21. 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.

22. 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.

23. 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)

24. 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)

25. CASE STUDY 2 FAMILIES WITH BOTH PARENTS WITH DEMENTIA LIVING AT CHILDREN ’ S HOME THE DIFFERENCES IN HOW THEY “ PLAYED THE GAME ”

26. 1 st Base Home Plate 3rd Base 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.

27. REFLECTIONS ONE OF BIGGEST CHALLENGES IS MOBILIZING CAREGIVERS/FAMILIES TO ACCESS THE RESOURCES IN THE FIRST INNING IT SPEAKS TO THE NEED FOR CONTINUOUS COACHES