This year’s Mental Illness Awareness Week (MIAW) theme—“Mental Illness and the Family: Resources for Recovery”— recognizes the tremendous role of families in supporting those with significant mental illness. At the same time, this theme highlights the difficulties that many families experience when they attempt to obtain timely care for their affected family members and support for themselves.

We psychiatrists have always recognized the family’s important contribution, but we have at times been perceived as being antifamily. This perception arises from outdated theories of causation regarding some mental illnesses—theories that appeared to blame families for a condition’s occurrence and de-emphasized their stabilizing influence. The additional burdens of general stigmatization and discrimination experienced by affected individuals and families have only made the lives of all involved more difficult. Although we have been able to clarify our recognition of the family as the major source of support for those with mental illness, much work remains to be done to help reduce the discrimination experienced by affected individuals and families.

In taking the time to provide clear, accurate information about the nature of the condition in question, we contribute significantly to helping family members understand an affected relative’s illness. Moreover, ample scientific evidence supports the notion that informed families are associated with better outcomes for affected individuals. Informed families are also powerful allies when resources are scarce: they have a most important role in advocating publicly for their affected relatives, whether at a local hospital level or at various levels of government.

Increasing information is available about the extent of direct care provided by families and its impact on them. A year ago, a Health Canada survey by Decima Research (1) found that 4% of adult Canadians currently care for a family member who is frail or suffering from a physical or mental disability or chronic illness. The report estimates that family caregivers comprise about one-third of the total caregiver population in Canada. Not surprisingly, more than 77% of these family caregivers are women, 70% are aged 45 years or over, and 25% are aged at least 65 years. Among family caregivers, 70% acknowledge that providing care has been stressful, even for the 50% who say they have been handling the responsibility very well. Those who report experiencing difficulty or stress in caring for a family member in the home are also most likely to say that caregiving has created significant (29%) or some (48%) difficulties in terms of their own emotional health. Significant problems in this area are most widely reported by women (32%), younger caregivers (36%), allophones (37%), those caring for family members under age 45 years (39%), and those caring for someone with a mental disability (47%). Recipients of family care are most likely to be a spouse or partner (38%) or a parent (33%). Of those receiving family care, 21% required assistance because of a mental disability and 18% because of a combined physical and mental disability.

This reality, largely unrecognized by government stakeholders, constitutes an invisible subsidy to the health- care system. Further, the burden on families will almost certainly increase over the coming years as the health-care system continues to experience financial constraints. As Dr. David Conn, co-chair of the Canadian Coalition for Seniors’ Mental Health and current president of the Canadian Academy of Geriatric Psychiatry, so aptly said in his June 4 presentation to the Senate Committee on Social Affairs, Science and Technology,

The economic value of family caregiving is enormous. Family caregivers provide the majority of long-term care in Canada and save the public system billions of dollars. However, supports to family caregivers are limited, usually insufficient, and mostly geared to the needs of the ill family member, not to the needs of the caregiver. We recommend the provision of family caregivers with the necessary supports to successfully provide care, including sources of relevant and meaningful information and the availability of appropriate levels of respite care and home care (2).

Your Association values highly its close collaborative relationship with the various groups whose mandate is to support affected individuals and families and advocate publicly for less discriminatory attitudes and practices toward those with mental illness. Many of these groups participated in last fall’s Summit on Mental Illness and Mental Health, supporting a shared call for a national mental health plan. Such a plan must ensure that quality care is available and timely and that supports are available for families when and where they require them. We will not successfully achieve our goal without the active participation of all stakeholders.

It is encouraging to see that this Summit—spearheaded by the CPA, the Canadian Psychological Association and the Canadian Medical Association—resulted not only in a much-expanded Canadian Alliance on Mental Illness and Mental Health (CAMIMH) but also in a new series of awards that this Alliance will be launching to celebrate champions of mental illness. These awards will be announced during this year’s MIAW, at a parliamentary luncheon on October 7.

As always, I value the opinion of all members of the Association, on this or any other issue. I can be reached directly at president@cpa-apc.org

References

1. Health Canada. National profile of family caregivers in Canada 2002. Ottawa: Health Canada; 2002. Available online at www.hc-sc.gc.ca/english/care/nat_profile02/7.html

2. Canada. Parliament. Senate of Canada. Standing Committee on Social Affairs, Science and Technology. Minutes of Proceedings and Evidence. 37th Parliament, 2nd Session. No. 17 (11th and 12th meetings concerning mental health and mental illness). Ottawa: Queen’s Printer; June 4, 2003.