Informal Care: Some Findings from Research Studies

1

• Informal Care Some Findings from Research
  Studies
• Raymond Pong, PhD
• Laurentian University
• April 2008

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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)

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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
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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)

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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)

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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)

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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
  carers 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.

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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.

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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.

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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.

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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?

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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.