East vs. West: Japanese, Canadian and American Collaborative Care Approaches to Family Caregivers

1. Session #D1 October 28, 201110:30 AM East vs. West: Japanese, Canadian and American Collaborative Care Approaches to Family Caregivers Toshiyuki Watanabe, MD, PhD, Takasaki University of Health & Welfare Mark J. Yaffe, MDCM, McGill University Barry J. Jacobs, PsyD, Crozer-Keystone Family Medicine Residency Program Collaborative Family Healthcare Association 13th Annual Conference October 27-29, 2011 Philadelphia, Pennsylvania U.S.A.

2. Faculty Disclosure We have not had any relevant financial relationships during the past 12 months.

3. Need/Practice Gap & Supporting Resources What is the scientific basis for this talk? --Demographic data on global aging --Country-specific empirical data on prevalence and morbidities of family caregivers --In-country observations from native healthcare professionals and educators about the use of clinical and social service resources by family caregivers

4. Objectives --Outline common healthcare and social service challenges to aging industrialized nations --Identify differences in approaches to collaborative care for aging adults and their family caregivers in Japan, Canada and the United States --Identify similarities in approaches to collaborative care for aging adults and their family caregivers in Japan, Canada and the United States --Define survivor guilt and unconscious guilt

5. Expected Outcome What do you plan for this talk to change in the participant’s practice? --Increase participant’s awareness of how cultural, psychological and systemic factors affect the provision of support services and collaborative healthcare for family caregivers

6. Learning Assessment A learning assessment is required for CE credit. Attention Presenters: Please incorporate audience interaction through a brief Question & Answer period during or at the conclusion of your presentation. This component MUST be done in lieu of a written pre- or post-test based on your learning objectives to satisfy accreditation requirements.

7. TODAY’S TALK • Aging and family caregiving in the industrialized world • A Japanese approach to family caregiving for dementia • A Canadian approach to family caregiving for dementia • An American approach to family caregiving for dementia • Discussion

8. AGING AND FAMILY CAREGIVING • We are members of a rapidly aging world, caused by declining fertility rates, increased longevity and (to a lesser degree) migration: • 2006: 500 million people in world 65 and over; by 2030, 1 billion (NIA, 2009) • Overall median age in 1950: 29.0; by 2050: 45.5 (UN, 2004) • Aging occurring mostly in industrialized European and Asian nations

9. AGING (cont.) • Implications: strains on pension and social security systems; increasing demand for healthcare and long-term care, especially for age-related chronic illnesses; need for healthcare workforce in geriatrics—but varies from country to country • Japan: 1950: 9.3 people under 20 for every person over 65; by 2025, 0.59 • Canada: has highest per capita immigration rate in world—to counter population aging

10. FAMILY (cont.) • Another implication is increasing need worldwide for family members to provide care to aging loved ones • Because the numbers of members per family are smaller and relatives are more geographically dispersed, it has increased the level of burden for each family member who has made commitment to family caregiving • Family caregiving associated with increased rates of medical, psychological and financial problems • Growing awareness of family caregivers’ duress has led to advent of a family caregiving consumer movement over past 20 years

11. PURPOSE OF THIS WORKSHOP • We will compare and contrast the collaborative approaches to family caregiving in 3 different industrialized nations by commenting on a given hypothetical case: • 47-year-old woman caring for her 72-year-old father with moderate dementia in her home; she also works part-time; has to take care of two teenagers; her husband is too busy with work to provide caregiving support

12. Collaborative Care Approaches to Family Caregivers in Japan Toshiyuki Watanabe M.D. Takasaki University of Health and Welfare

13. Japan Total population and Ratio of elderly (over 65 y/o) Hundred million Ratio of elderly Total population

14. Aging and Economy Coming high demand real economic growth rate

15. Number of people with dementia

16. The Meaning of Dementia in Japan 「痴呆」“ＴＩＨＯ” means Balloon-head or Bimbo ↓ Changedacademic parlance(2004) 「認知症」“NINTISHOU” means disturbance of memory and cognition Over 60 % of Japanese are free from bias and prejudice. (Research in Tohoku area) according to information from movies and TV

17. Memories of Tomorrow (About a businessman with premature dementia) Starring Ken Watanabe

18. Japanese couple who are famous actors

19. Care Insurance Systems in Japan 4,944,942 Japanese （2010） Long-Term Care Insurance System (2000) Care Manager license was established Designated In-Home Long-Term Care Support Providers Primary nursing care requirement authorization Certification of Needed Support level Grades 1, 2 Nursing care level Grades 1-5 Based on assessment of care requirements ４） Certification Grade 1: max 49，700 yen/month Care level Grade 5: max 358, 300 yen/month

20. Kinds of services --Home-based care: bathing service, nursing care, rehabilitation, overnight care --Transportation to rehabilitation service, medical appointments, adult day care programs --Adult day programs --Short-term stay at a care facility: medical services daily life care for elderly in specific facilities

21. Caregiving Problems in Japan 25% of Caregivers were rated depressed (SDS) Suicide and homicide Abuse of care receiver while both at home and in facilities Unmarried child and elderly parents Elder-to-elder nursing High job turnover among care workers

22. Tendencies of Japanese Family Caregivers Japanese caregivers tend to select home care over care in nursing homes. For most Japanese caregivers, caregiving is a solo operation without the participation of others. 5% Japanese caregivers don’t go to medical facilities even when seriously ill.

23. Problems With Each System Dissatisfaction with environments of nursing home and geriatric hospital community Differences among members regarding motivation for and knowledge about caregiving family Unconscious guilt stems from bond between caregiver and care receiver caregiver

24. Unconscious Guilt Separation guilt (Unconscious Belief) When I become independent or separate from the family, the family becomes unhappy. Therefore, I am always together with the family. Survivor guilt (Unconscious Belief) When I become happy, the family becomes unhappy. Therefore, I must never be happy.

25. Issues in Collaborative Care for Family Caregivers in Japan Professional 1. Toimprove care worker's working conditions 2. To give staff skills for understanding and intervening with families. 3. To improve the environments of nursing homes Family 1. To encourage professionals to pay attention to family caregivers and the relationships between caregivers and care receivers . 2.To sharing caregiving knowledge and skills will all members of family. Caregiver To understand conflict, guilt, loneliness and depression from the points of view of family bond and family history.

26. Case Solutions Professional Offer services of a Care manager and decide Grade of Care Insurance Family Share knowledge and skills among all family members for taking care of loved one with dementia. Caregiver Attend to physical and mental health needs Understand the caregiver’s mind-set from the viewpoint of relationships and family history

27. Canada: A western culture with a “National” health insurance system Mark J. Yaffe, MDCM, MClSc, CCFP, FCFP Departments of Family Medicine McGill University and St. Mary’s Hospital Centre Montreal, Quebec, Canada mark.yaffe@mcgill.ca

28. Discussion to contextualize the case for Canada • Geography of Canada • Political Jurisdictions • Caregiver Demographics—Need • Caregiver Demographics—Characteristics • Role of Federal Gov’t in Health & Social Services • Role of Prov. Gov’t in Health & Social Services • Range of Caregiver Services • Funding Caregiver Needs—Federal, Provincial, Private • Caregiver Demographics—Supply • Consideration of the Case

29. Characteristics of Canada • World’s second largest country (sq.mi.) • 10 provinces and 3 territories • Population: ~ 34,000,000 • Provincial Pops: 142,000 - 13,000,000 • Territorial Pops: 32,000-44,000 • ~ ½ of national pop. lives in / near large metrop. Centers.

30. Demographic Factors Affecting Caregiving --Need • Aging population (1/8 are seniors) • Increasing chronic disease & disability, 40 % report ≥ 1 chronic illness • Greater de-institutionalization • Dementia: 500,000 (1.5%) • By 2015, seniors > children

31. Canadian Caregiver (CG) Characteristics • >3 million (10%) are CGs. • CGs provide $25 billion unpaid labour annually to the health-care system (Hollander M, Liu G, & Chappell N, 2009). • While >2.3 million CGs are employed, they annually provide 893 million hrs.of care. • Working CG reduce work by 2.2 million hours per week = lost productivity of 157,000 full time employees. (Fast J et al., 2011)

32. Federal Jurisdictional influence on Health & Social Services • Role is to create and “oversee” national goals, strategies, and policies for the health care of Canadians, guided by the Canada Health Act. • The Medicare Act was designed to insure universal access to medical care and that no one went broke dealing with illness – but it does not accommodate the demographics of aging, nor provision of long-term care. • Federal policy does not provide national or universal programs, standards or guidelines for development or delivery of home care, except for 2 targeted groups (First Nations and Veterans).

33. Federal Jurisdictional influence on Health & Social Services • Specific mandate ofHealth Canada is improve health of Canadians through a -- Minister of Health -- Minister of State for Seniors & Aging -- Minister of State for Families & CGs -- Public Health Agency of Canada: -Division of Seniors and Aging -Division of Caregivers • Ministry of Human Resources & Social Development: Broad mandate that includes “improve lives of citizens as they “make life transitions”

34. Provincial and Territorial Jurisdictional influence on Health & Social Services • Social Services is almost exclusively a P. and T. responsibility. • Despite a national vision, P and T structures, programs, services, eligibilities, and co-payments vary -- influenced by jurisdiction, population size, need, budgets, political expediencies. • E.g. Quebec: Ministry of Health and Social Service Ontario: Ministry of Health and Long-term Care Others: Ministry of Health

35. Provincial and Territorial Jurisdictional influence on Health & Social Services • An assumption that family is care provider of first choice is inculcated in health and social care policy. • Provinces increasingly expect family to perform tasks carried out by paid health or social service providers. • The community sense is that only when the caregiver is unable to provide care will the system augment care (Caron CD, & Bowers BJ, 2003)

36. Variable Inter- and Intra- Provincial Services: • Quebec: one of few provinces which appears to incorporate family CGs in the design and delivery of home care services. • Manitoba: Caregivers Recognition Act - increase recognition / awareness of caregivers; -acknowledge contribution CG make to society; - help guide development of a framework for CG recognition and supports. • Newfoundland and Labrador : Regional Caregiver Networks and Seniors Resource Centre • Outcome: Differing programs in home care, homemaking and nursing services, respite care, and information and counseling targeted at CGs.

37. Total Funding of Services • $192 billion / yr. spent on health care. • ~70% is government-funded ($134.4B) • ~30% covered by private health insurers and individuals ($57.6B): Increased privatization of health and continuing care, based on personal desire or need to fill gaps in desired or needed services • 11.9 per cent of gross domestic product (GDP) • Canada ranks 5th- 6th amongst OECD countries for highest per-capita spenders on health care

38. Federal Funding of Services • The federal government distributes to the P+T governments (complex multi-partite agreements) monies specifically designed to support adherence to the National Health Agenda –but monitoring / policing adherence is problematic : e.g trend to increased privatization of health and continuing care) • Additional federal to provincial “transfer” payments where “have” provinces subsidize “have not” provinces. Monies not designated for health care, but…sometimes…

39. Provincial Funding of Services • Using funds derived from federal programs • Using funds derived from tax payers’ contribution to the provincial health insurance plan • Discretionary utilization of general tax revenues. • Almost all medical care is under universal medicare (some may opt for growing, small parallel private system in some provinces); Some social and longterm care services are covered by provincial funding • Between 43-46% of annual provincial expenditure goes to health care

40. Caregiver Financial Assistance • Compassionate Care Benefit (federal): With a medical certificate indicating medical condition and "significant risk of death” within 26 weeks, requiring care of ≥ 1 family member. Provides job protection for 8 weeks; of which 6 are eligible for pay; Taxable benefit of max $413 +/wk, adj. to hrs. worked/wk and gross income; underused since not well known • Caregiver Tax Credit (federal and provincial):the amount of application of rules vary province to province.

41. Non-Governmental Programs • Canadian Caregiver Coalition: Advocacy, Resource bank, website • Victoria Order of Nurses: --“Partners in Care” --SMILE (SE LHIN) offers seniors options in managing their own care – they can choose the community services they need, when they need them, and who will provide them. --Community Respite through Neighbors Helping Neighbors program

42. Demographic Factors Affecting Caregiving--Supply • Labor shortages → people working longer hours, more years • Economic pressures: unemployment, investment losses, changes in pension entitlements may influence timing of retirement. • 18 year baby boomers = 8.5 million people – ¼ of pop. may not want or be able to retire • More decentralized families • More divorced and blended families

43. Demographic Factors Affecting Caregiving--Supply • Feminization of work force decreases availability for caregiving • Children staying home longer or returning • Increased same-sex marriages with some ill-defined obligations to families of origin • Increased cultural diversity ( Canada as a mosaic, not a blending pot • With longevity, sandwich generation becomes club sandwich generation

44. Case Solutions (1) • Will this 47 year old Canadian woman want or be able to assume the CG role for her parent with dementia? The Canadian culture is to be willing, but it will be influenced by the regional and personal issues that have been discussed. • Much CG distress is verbalized / identified to family doctors (paid by Medicare)…often in an initial context of health complaints: fatigue, insomnia, headaches, digestive problems, back or neck pain, irritability, sadness, guilt… • Degree of physician response is very variable---based on MD level of interest, skill, time, acceptance of the burden of care, and remuneration. • Patient satisfaction with doctor input (normalization, ventilation, suggestions, exploration of flex working conditions) is very variable.

45. Case Solutions (2) • In province of Quebec, gov’t funded CLSC = Local Community Service Center =access portal for care of complex cases involving elderly or those with loss of autonomy (RN, SW, OT/PT, Nutrition) • CLSC budgets based mostly on population size of catchment areas, and only partially on burden of care….therefore services are variable inter-CLSC and case to case.

46. Case Solutions (3) CSSS Cavendish Caregiver Support Centre • Provincial +/- variable pvt (personal and corporate) funding • Drop-In Respite Program; • In-Home Stimulation Program: in-home physical and recreational activities on 1:1 basis; • Foyer Program: support groups, workshops, information sessions, access to a resource centre; • Short Term Counseling; • Care-ring Voice: free, bilingual program connecting caregivers and families to information and support through teleconference services.

47. Case Solutions (4) • Non-governmental services: -Alzheimer Society (First Link) -Other Disease Societies -Cultural / Religious Support Services -Psychologists, Counselors, Social Workers in the “private” sector.

48. Case Solutions (5)Creativity“The test of a people is how it behaves toward the old. It is easy to love children….but the affection and care for the old , the incurable, the helpless, are the true gold mines of a culture” Abraham Joshua Heschel Polish born German educated American theologian, ethicist, civil rights advocate

49. THE U.S. & FAMILY CAREGIVING • Less graying than other industrialized nations thus far, but still growing challenge • 2009: 40 million Americans over 65—13% of population (1 in 8); by 2030, 72 million, 19% (AOA) • 5.5 million Americans with Alzheimer’s dementia; by 2040, 15 million (Alzheimer’s Association) • 65 million Americans providing care to a family member in the course of a year; about 25 million regularly providing care

50. U.S. (cont.) • Despite passage in past 20 years of Family and Medical Leave Act, National Family Caregivers Program and Lifespan Respite Act, US has a patchwork of underfunded and inadequate social supports for family caregivers • No paid leave for family caregivers • Home health aides, adult daycare programs, respite services—not covered by health insurance; may be funded in part by governmental agencies if you meet criteria for having a very low income