Presented at IRPP Montreal, PQApril 3, 2009

Family/friend Caregivers: Often invisible and unrecognized but critical ingredients in the

maintenance and growth of the aging population

Dilemma: Caregivers need to be recognize as individuals with rights to their own services and supports. At the same time public policy will need

to be targeted to caregivers who provide a certain amount of care (not help).

1st Reality Check: ◦ The majority of care provided to older people in the

community is by family and friends – assumptions of their continued availability is problematic.

2nd Reality Check:◦ System of supports for family/friend caregivers is limited

and inconsistent; their role as caregiver, ambiguous. 3rd Reality Check

◦ An increasing proportion of the Canadian labour force are caregivers to older persons –resulting in short and long term consequences.

4th Reality Check◦ Reduced availability of family and changing values in

purchasing care will increase demand for publically and privately-funded home care programs and services – Can this demand be met?

• Income Security – Many caregivers incurred extra expenses, other countries have financial support policies (beyond tax credits).

• Health/Home care services – Caregiver needs are rarely assessed – their needs are diverse. Respite, education and support are needed.

• Labour policy – Employed caregivers face short and long term consequences on income, career advancement, and productivity.

• Human Resource Policy – Increased demand for paid workers to provide support and personal care

Availability of Family/Friend Caregivers

Issue: ◦ Family/friends caregivers are the reason why home care is

cost-effective yet supply and demand changing.

Issue: ◦ Limited access to supports for these caregivers

Income security limited eg financial support, CPP, taxation policies (Reality #1)

Issue: Diversity of family caregivers – there is no one solution but a range of responses that are needed

Solutions: Review international policies on financial support

for caregivers:

15%

17%

19%

21%

23%

25%

27%

29%

31%

33%

2001 2011 2021 2031 2041 2051

65+ 85+

Proportion of females 65+ with no surviving children, among those living in the community, by age group,

2001-2051.

Supply: Availability of surviving children

65+

85+

Source: Carrière, Y.; Keefe, J.; Légaré, J.; Lin, X.; Rowe, G. (2007).

• In long term - decreased number of children.

• Narrowing mortality gap means older spouses caring.

• In short term more adult children affected by:

• Women’s participation in the paid labour force• Mobility Patterns

In rural areas – Out-migration of youth• In urban areas - Increased cultural diversity• In rural areas access to supportive services• Length of care and Sustainability

9

0

100000

200000

300000

400000

500000

2006 2011 2016 2021 2026 2031

Eld

erl

y p

op

ula

tio

n a

ge

d 6

5+

re

ce

ivin

g a

ss

ista

nc

e

Men - Formal Women - Formal Men - Informal

Women - Informal Men - Mixed Women - Mixed

+ 79 %

+104%

+101 %

+ 90

+142%

+111%

Variation 2006-2031(%)

Women continue to be greatest number of receivers of informal and formal support but their rate of increase is less than men

Source: Keefe, J. & Légaré, J. (unpublished data)

Limited Supports for Family/Friend Caregivers

Diversity in support:◦ Public home care programs vary in supportive

services for family/friend caregivers ◦ Most can only be accessed through the client

Shift to Community CareReduced hospital staysIncreased complexity of care and expectations/ burden on

family/friend caregivers.Caregiver needs not assessed

System Challenges/opportunities`◦ Continuing care policies are under P/T jurisdiction◦ Public continuing care programs becoming increasing used

for acute care substitution ◦ Formal support for chronic care privatized and not regulated

Federal

• Compassionate Care Benefit

•Tax relief

Private

• Home support services

• Respite

Community

• Voluntary organizations

• Advocacy and support groups

Provincial• Home care, respite

• Tax relief

• Education, information, support

Federal - Issues• CCB limited scope

• Tax Credits are non-refundable

Provincial - Issues• Varies by province and region

• Eligibility, entitlement• ↑ Acute HC

Private - Issues• Limited to those who can

afford these services• Location

Community - Issues• Do not exist in all regions

• Rural/urban

Federal : Taxation and EI Reviewed financial support policies in

10 countries (direct, indirect & labour)◦ Review policies for compensating caregivers

and assess their applicability to Canada◦ Understand strengths and limitations of other

countries approaches◦ Assess how they might be implemented in

Canada

Direct Services Enhanced Respite/Home Care Education/Information/Support

Direct Financial Support◦ Allowances paid to caregiver (less extent wages)◦ Allowances paid to care receiver to pay caregiver◦ Reimbursement of expenses

In Direct Financial Support◦ Taxation (benefits, exemptions )◦ Pension (Credits, exemptions)◦ Social security (workers comp, vacation, sick days)

Keefe, Glendinning & Fancey (2008). In A. Martin Matthews & J. Philips (Eds) Blurring the Boundaries

Caregiving is a global issue Countries have “carer” strategies or comprehensive

programs* New Zealand Strategy for Careers (Jan. 2008) United Kingdom - National Strategy for Carers (Renewed June 2008) Australia - Home and Community Care Program HCAA (1992) -

National Respite for Carers Program (1996) US Amendment to Older Americans Act (2000) established the National Family

Caregiver Support Program Some recognize caregivers as clients

Australia’s HCAA recognized caregiver’s as clients in their own right United Kingdom’s Carers (Recognition and Services) Act (1995) gave

caregivers the right to an assessment of their needs. England & Wales – 2004 The Caring Equal Opportunities Act gave caregivers

more choice and opportunity.

*See http://www.msvu.ca/mdcaging/policyprofiles.asp for more information on international caregiver financial compensation policies.

• ~$90 CAD every two weeks to caregiver (+$600 annual bonus)

• Available to all caregivers who meet care requirements for child or adult (including elderly)

• Not taxable

• “Recognition” rather than income replacement

• CG may be eligible for Carer Payment and direct services

GermanyLTC insurance Home Care/

Domiciliary Care Benefit

• Eligible clients choose money or services or combination

• 3 payment levels based on CR needs

• $318 to $1033 per month

• Paid to CR to pay CG – but no evidence of how it is used

• Additional payment available for 1 month Stand-In Care

•Pension and accident insurances premiums covered

All 10 Policy Profiles are available at: www.msvu.ca/mdcaging/policyprofiles.asp

1. Introducing Money into the care relationship

2. Supportive or negatively affecting women 3. Consumer Choice and empowerment4. Woodwork effect – costs

Employed caregivers

In 2002, more than 1.4 million Canadians age 45 and older combined paid employment and care to older adults, and most caregivers worked full-time (Walker & Fast, 2005)

◦ Issues: Economic Costs - Short and long term consequences, lost productivity;

◦ Non economic Costs: Health

◦ Policy Review: International review of public policies in labour similar to Canada’s EI Compassionate Care

◦ Solutions: Proposed labour policies to support employed

caregivers

Percentage of caregivers 45 years and over who experienced employment consequences, 2002

Consequences to employed caregivers

CanadaCanada SwedenSweden JapanJapan CalifornCaliforniaia

PolicyPolicy Compassionate Compassionate Care BenefitCare Benefit

Care Leave Care Leave ActAct

Family Care LeaveFamily Care Leave Paid Family Paid Family Care Leave Care Leave BenefitBenefit

NatureNature Gravely ill Gravely ill TerminalTerminal Dependent careDependent care All reasonsAll reasons

LengthLength

Average Average useuse

6 wks + 2wks 6 wks + 2wks waitingwaiting

4.3 weeks4.3 weeks

60 days60 days

10 days10 days93 days93 days

N/AN/A42 days42 days

33.6 days33.6 days

Benefit Benefit Rate*Rate*

Average $Average $

# # BeneficiarBeneficiariesies

55%55%

$1,425$1,425

17551755

80%80%

$1001$1001

95509550

40%40%

$2,532$2,532

49864986

55-60%55-60%

$2549 $2549

16,500 (12%)16,500 (12%)

EligibilityEligibility Parent, spouse, Parent, spouse, or child or child (expanded in (expanded in 06 to most 06 to most family)family)

Employee must Employee must have have accumulated accumulated 600 insured 600 insured hours in past hours in past 52 weeks52 weeks

Family, Family, friends, or friends, or neighboursneighbours

Employee Employee must be must be contributing contributing to sickness to sickness benefitsbenefits

Extended family who Extended family who co-reside** with the co-reside** with the employeeemployee

Employee must have Employee must have worked more than worked more than 11 days in a month 11 days in a month for more than 12 for more than 12 monthsmonths

Parent, Parent, spouse, or spouse, or childchild

Employee Employee must be must be contributing contributing to State to State Disability Disability Insurance Insurance benefitsbenefits

Employees

Caregivers

Caregivers

Employees

Recognize that any policy occurs in a particular context:

Home and continuing care servicesOther income security and labour standards important

National policiesall caregivers

National policiesemployed caregivers

Workplacepolicies

Percentage of

Caregivers Who areeligible

Direct Services Enhanced Respite/Home Care Education/Information/Support

Direct Financial Support◦ Allowances paid to caregiver (less extent wages)◦ Allowances paid to care receiver to pay caregiver◦ Reimbursement of expenses

In Direct Financial Support◦ Taxation (benefits, exemptions )◦ Pension (Credits, exemptions)◦ Social security (workers comp, vacation, sick days)

Keefe, Glendinning & Fancey (2008).

Labour Unpaid Leaves Paid Leaves for familyPaid Leaves for compassionate/chronic care

Challenges in accessing formal services

Reality Check: Reduced availability of family and changing values in purchasing care will increase demand◦Issue: Recruitment and retention of human

resources result in competition for resources within continuing care.

◦ Issue: Working conditions, compensation education and training diverse across Canada

Human resources to meet growing demands ◦ Less attention given to continuing care/care

workers

Retrieved from Women on Home Care

Published by the Canadian Women’s Health Network

0

1,000,000

2,000,000

3,000,000

4,000,000

5,000,000

6,000,000

7,000,000

Informal Formal Mixed

2006 2011 2016 2021 2026 2031

+87 %

+124 %

+100 %

Compensation◦ Low wages, wage parity, limited benefits, travel

Education and training◦ Standardized training, entry requirements, skills

upgrading, meeting current demands/needs Quality assurance

◦ Standards for home care programs, employees and continuity of care

Working conditions◦ Work loads, stress, safety, job insecurity, “value”

Income Security Direct Financial Support:

Caregiver Payment/Allowance

Pension Schemes reduced penalty for dropout State pays pension credits

Taxation System Inclusion of care expenses Expansion of Tax Credits

Social Security State pays

employment/sickness insurance

Health/Continuing care Respite care/Home Care Recognize caregivers as a clientAssess caergiver needs

Employment/Labour Leave policy – employment insurance Labour Standards policy

Health Human Resources ` Improve working conditionsTraining and Standards Focus on Recruitment and retention

POLICY DOMAINS

Workplace policy directed to employees National insurance for all employees Direct support policy to all caregivers

(including employees) Increase direct service policy to support

care in the community Intersect of policy domains

◦ both financial support in multiple domains as well as services need to be considered.

BUT WE CAN’T AFFORD IT…

IT COSTS TOO MUCH…….

0

2000

4000

6000

8000

10000

12000

2001 2011 2021 2031 2041 2051

Co

st

(mil

lio

ns)

Option 1:Option 1: Provision of allowance ($2400 per yr/person) Provision of allowance ($2400 per yr/person)

Option 2:Option 2: Provision of respite (4 hours/week additional respite - $5200/yr) Provision of respite (4 hours/week additional respite - $5200/yr)

Option 3:Option 3: Cost of average additional 3 months of an institution for CR $12000/yr) Cost of average additional 3 months of an institution for CR $12000/yr)

2. Services

1. Compensation

3. Institutional Cost 3 months

5.7 billion

10.9 billion

Keefe, J.; Légaré, J.; Carrière, Y. 2007. Developing new strategies to support future caregivers ... Projections of need and their policy implications. Canadian Public Policy, 33, 65-80

Need to consider the ECONOMIC, SOCIAL, and HEALTH CARE Costs of NOT supporting caregivers.

BUT WE CAN’T AFFORD IT… IT COSTS TOO MUCH…….