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 UniversityBarry J. Jacobs, PsyD, Crozer-Keystone Family

Medicine Residency ProgramCollaborative Family Healthcare Association 13th Annual Conference

October 27-29, 2011 Philadelphia, Pennsylvania U.S.A.

Session #D1October 28, 201110:30 AM

Faculty Disclosure

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

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

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

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

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.

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

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

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

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

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

Collaborative Care Approaches to Family Caregivers in Japan

Toshiyuki Watanabe M.D.Takasaki University of Health and Welfare

JapanTotal population and Ratio of elderly (over 65 y/o)

Total population

Ratio of elderly

Hundred million

Aging and Economy

real economic

growth rate

Coming high demand

Number of people with dementia

The Meaning of Dementia in Japan「痴呆」　 “ ＴＩＨＯ”　 means Balloon-head or Bimbo　 　　　　　　↓

Changed academic 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

　　　

Memories　of　Tomorrow(About a businessman with premature dementia)

Starring

Ken Watanabe

Japanese couple who are famous actors

Care Insurance Systems in JapanLong-Term Care Insurance System (2000)1) Care Manager license was established2) Designated In-Home Long-Term Care Support Providers 3)　Primary　nursing　care　requirement　authorization　Certification of Needed Support level 　　　 　 　　 Grades 1, 2

　　　　 　 Nursing care level 　　 　 　　　 Grades 1-5

Based on assessment of care requirements４）　 Certification Grade 1: max 49 ， 700 yen/month Care level Grade 5: max 358, 300 yen/month

4,944,942 Japanese （ 2010 ）

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

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

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.

Problems　With　Each　System

　

family

community

　　 　 Dissatisfaction with environments of nursing home and geriatric hospital

caregiver

Differences　among　members　regarding　　motivation　for　and　knowledge　about　caregiving

Unconscious　guilt　stems　from　bond　between　caregiverand　care　receiver

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.

　•

Issues in Collaborative Care for Family Caregivers in Japan

Professional1. To improve care worker's working conditions

2. To give staff skills for understanding and intervening with families. 3. To improve the environments of nursing homes

Family1. 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.

CaregiverTo understand conflict, guilt, loneliness and depression from the points of view of family bond and family history.

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

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

Discussion to contextualize the case for Canada

1. Geography of Canada2. Political Jurisdictions3. Caregiver Demographics—Need4. Caregiver Demographics—Characteristics5. Role of Federal Gov’t in Health & Social Services6. Role of Prov. Gov’t in Health & Social Services7. Range of Caregiver Services8. Funding Caregiver Needs—Federal, Provincial, Private9. Caregiver Demographics—Supply10. Consideration of the Case

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.

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

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)

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).

Federal Jurisdictional influence on Health & Social Services

• Specific mandate of Health 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”

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

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)

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.

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

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…

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

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.

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

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

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

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.

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.

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.

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.

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

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

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

U.S. (cont.)

• Dementia—more prevalent but not well understood; greatly feared

• Dementia caregiving—belief that family should take care of its own; gender bias—60-70% of caregivers are women: wives or oldest/youngest daughter

• Often initial reluctance to reach out for and accept support services because of fear of being judged

• Dementia caregivers frequently become socially isolated because of shame and embarrassment over loved one’s symptoms

U.S. (cont.)• 70% of Alzheimer’s patients cared for at home; but

many families opt for long-term placement in disease’s latter stages

• Our case of 47-year-old female caregiver:• Stress-inducing “sandwich generation” scenario• She won’t ask teenagers for help with her father

because she doesn’t want to interfere with their lives• Angry at husband for his lack of involvement• Resents father; feels trapped having to care for him• Declining quality of marital, parental relationships• Her boss won’t give her time off to caregive

U.S. (cont.)

• Clinical approaches:• Increase support: meet with daughter and her

husband to negotiate greater marital support (while also ensuring protected marital time apart from family caregiving); find age-appropriate roles for teenagers to contribute to caregiving; reach out to extended family members for help; utilize community services, such as adult daycare

U.S. (cont.)

• Teach skills: behavior management for problem behaviors; navigate complex and fragmented social service and healthcare systems

• Promote positive meanings: help daughter take pride in her caregiving; e.g., spiritual purpose

• Define commitments: help daughter identify the limits of her and her family’s energies; give her permission to place father in a nursing home if caregiving’s sacrifices are too much for her, husband and children

Session Evaluation

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