1. 1 Informal Care: Some Findings from Research Studies Raymond Pong, PhD Laurentian University April 2008

2. 2 Defining Informal Care Informal caregiving (also called family caregiving) is understood to mean care given to dependent persons, such as the sick and elderly, outside the framework of organized, paid professional work. (Dictionary of Sociology) 70-80% of all in-home care for elderly people with chronic impairment is provided by families or friends. (Stoller 2002)

3. 3 Factors Leading to Reliance on Informal Care 1. Aging Population Over 4.3 million Canadians aged 65 and over in 2006, a 12% increase since 2001; those aged 85 and over represented 12% of overall senior population. (Canadian Social Trends, 2007) 2. De-institutionalization of health care In 2002, an estimated 1.0 million Canadians aged 65 and over (85%) received health care while living in the community. (General Social Survey, 2002) Census Canada – Population: Canadian Social Trends, 2007

4. 4 What Do We Know about Informal caregivers? -1 In 2002, over 1.7 million adults aged 45 to 64 provided informal care to 2.3 million seniors; 70% of caregivers had full or part-time employment (General Social Survey 2002) Health Canada survey showed that 3.9% of all Canadians -roughly 933,000 people - are providing care to a family member who is suffering form a physical or mental disability, is chronically ill or frail (Decima 2002) Canadian Aging Research Network showed that 60% of caregivers took care of one elderly relative, 32% helped two and 8% helped three or four. Ten percent reported caring for their grandparents. (Brink 2004)

5. 5 What Do We Know about Informal caregivers? - 2 Estimated 75% of informal caregivers are spouses and adult children. (Kane and Penrod 1995) Women are the predominant caregivers (65%), although men represent a substantial group as well. (Fast & Keating 2001) Informal caregivers are usually middle aged or old themselves. The average age is around 60. Six percent of those aged 75 and over are also caregivers. (Cranswick 2002)

6. 6 Economic Costs of Informal Caregiving In 1996, the aggregate replacement cost of informal care in Canada was estimated at between $5.1 and $5.7 billion nationally (Fast and Frederick 1999) It would have taken 276,500 full-time employees to replace the work of the 2.1 million Canadians who cared for seniors in 1996. (Fast & Keating 2001) Forty-four percent of surveyed caregivers reported paying out-of- pocket costs to provide care for their family member, with the most expenses being for transportation (81%), non-prescription medication (71%), medical supplies (51%), prescription medications (43%) and other equipment (41%). Forty percent reported spending between $100 and $300, and 24% in excess of $300 per month on such expenses. (Decima 2002)

7. 7 Non-economic Costs of Informal Caregiving Informal caregiving can have non-economic consequences for the carer leading to a decline in quality of life. Physical deterioration of physical health of the carer Social interpersonal relationships: restricting carer’s ability to participate in social activities Emotional the most pervasive findings from research relate to the psychological impact of caregiving, such as depression, guilt, anxiety, etc.

8. 8 Canadian Public Policy Responses Relatively few current Canadian public policies are designed to support informal caregivers by reducing their economic costs. A caregiver tax credit was introduced in 1998 federal budget to provide tax relief to individuals providing in-home care for elderly or inform family members; however, this has little impact on out-of pocket expenses, since very few caregivers meet the eligibility criteria. (Fast and Keating 2001) In Canada, informal caregivers are not directly compensated for their caring work. An exception is the Veterans Affairs Canada Attendance Allowance available to veterans to hire assistance. (Fast and Keating 2001). Since its inception in 1981, the Veterans Independence Program (VIP) is providing veterans with counseling, housekeeping, personal care, respite, etc. to offset economic costs to their caregivers. (Struthers 2007) In 2004, the federal government introduced a new type of special EI benefit, called Compassionate Care Benefit, which provides eligible employees with up to eight weeks of benefits to care for a seriously ill or dying family member. (Osborne and Margo 2005) Almost all provinces and territories matched it.

9. 9 Informal Caregiving Policies in Other Countries -1 USA (Feinberg et al. 2002) National Family Caregiver Support Program (amendment to the Older Americans Act) offers various types of support for caregivers: –Information about available services –Assistance in getting access to supportive services –Individual counseling, support groups, and caregiver training –Respite care –Limited supplemental care to complement informal care New Zealand (Goodhead & McDonald 2007) New Zealand Government endorsed the development of a national caregivers strategy to be launched in 2008, which will be supported by a 5-year action plan.

10. 10 Informal Caregiving Policies in Other Countries -2 Sweden (Johansson & Thorslund 1991) Informal care is an integral part of the Elderly Care policy in Sweden. It is seen as complementary to rather than replacement for formal care, and is supported through income subsidies and formal services including: –Short time off work (3-10 days) –Economic support –Family members can be employed as (personal) carers.

11. 11 Critical Issues of Informal Caregiving What is the prevalence of informal caregiving? What subsets of population are involved in informal care? What particular characteristics of caregivers are important from a policy perspective? What problems, if any, exist in the quality of care that informal caregivers provide? What role can public policy play in helping improve the quality of care provided by informal caregivers?

12. 12 Suggested Areas for Improvement Information for informal caregivers about available services and support programs; Training for informal caregivers to improve their skills in providing appropriate care; Additional workplace support to help balance caregiving and employment demands; Financial compensation to offset costs incurred by informal caregivers; Respite care; Counseling and psychosocial support; Better linkages between informal and formal care.