Caregiver Symposium

Symposium Speakers Debate Canada's Health Reform Policy And Its Impact on Caregivers

In June, 1998, Veterans Affairs Canada's Gerontological Advisory Council hosted its first educational symposium in Charlottetown, PEI, treating staff and the general public to a spirited discussion on health reform policies in Canada and its impact on the estimated three million Canadians who provide care to an aging or disabled family member.

Three Council members, representing Canada's leading experts in the field of caregiving, participated in the event: Dr. Neena Chappell, Director of the University of Victoria's Centre on Aging; Dr. Norah Keating, a Professor in the Department of Human Ecology at the University of Alberta; and Professor Evelyn Shapiro, a Professor of Community Health with the University of Manitoba's Faculty of Medicine. The discussion was moderated by the Department's Gerontological Advisor, Dr. David Pedlar.

Symposium Highlights

The following comments represent our Symposium speakers' opinions on a number of topics associated with health reform policy in Canada and their impact on Canada's caregiver community.

NC : Dr. Neena Chappell
NK : Dr. Norah Keating
ES : Prof. Evelyn Shapiro

Health Reform:

NC: The vision of health reform that we bought into in this country was one that aims to broaden our health care system, make it more responsive to our needs and provide care closer to home. One of the few opportunities to make it happen may be the current federal efforts toward a national home care program. We have to lobby hard within our local communities to ensure that health reform does not simply mean restricting Medicare.

NK: My concern is that families with fewer and fewer resources are expected to do more and more. That's why initiatives such as those taken by VAC are so important. They (VAC) have pioneered programs which provide services to veterans living at home and in residential care and are currently exploring ways to provide more support to caregivers in recognition of their tremendous contribution to the well-being of seniors. I hope their initiatives might well set the standard for a more caring society in Canada in the 21st century.

Community Care:

NC: The trend toward shorter hospital stays and more outpatient surgery has placed a tremendous demand on our traditional home care system for intensive, post acute care. I refer to this as the "medicalizing" of community care...If we indeed have the opportunity to build a national home care program, one of the catchwords we have to be wary of is integration. In theory, it's fine. In reality, I argue against it because I think community care in this country is too weak, too fragile and too fragmented to hold its own within a truly integrated health care system.

NK: My research tells me that most families care about each other and do a great deal of caring for each other. However, I also believe we may be moving in policy directions which may exceed families' abilities to do both these things. Specifically, I believe that the rhetoric about families being the best community resource for elder care has been, in part, a smokescreen for justifying a reduction in public sector resources in health and social areas.

ES: Home care is a minor partner in the scheme of health care, using up somewhere between 2% - 5% of provincial health budgets. It's a little flea which is often stepped upon by the provincial elephant.

Informal Caregivers

NC: We have an image of all caregivers as being isolated. Current research shows, in fact, that there tends to be a group of people caring for the care recipient although one person does emerge as carrying most of the load. In BC (Canadian figures are not available), we estimate that about 20% of caregivers are truly isolated. We really have to pay attention to them in terms of our service delivery system.

NK: In a recent study involving residents of three Alberta programs (a small residence for people with dementia, adult foster care and assisted living) we found that residents, on average, received almost 40 hours of care a month from family members. This represented about 30% of the direct services received by these residents, with an economic value representing more than $4,000 per resident per year.

Definition of Caregiving

NK: In recent focus groups, most agreed that caregiving involves a broad range of tasks from housework to household repair to financial management, transportation and personal care. These are things people do for each other throughout life. So what makes them elder care? Our study participants felt the major determinant was whether the provision of the task helped an elderly person maintain or enhance independence and that independence was achieved through having control over the types of services they needed and over who delivered those services.

Family Unit Assessment

ES: I think we owe caregivers an assessment that is independent of that which is provided to the care receiver. I think we also have an obligation in the home care field to assess the family unit and determine what the family can and can't do. We have to remember that people are different and that families function on different levels and that, frankly, some care recipients would be better off if their relatives volunteered to help someone else.

NC: As part of the recent National Respite Project, sponsored by the Canadian Association of Community Care, we developed an extensive assessment form which we used to assess a group of caregivers....Overwhelmingly, caregivers told us that our assessment of them changed how they viewed themselves. They developed a new appreciation for their importance within the family and the community and a better recognition of the effect their caregiving had on the care recipient.

Client-Centred Service:

NK: While a broad range of people agree on a set of tasks that comprise services to seniors they differ substantially on which tasks are most important to the maintenance of seniors' independence. If we're in an era of client-centred service to seniors, how much are we really willing to let seniors determine what is appropriate care...particularly with seniors with cognitive impairments?

Respite:

NC: Traditionally, we view respite as one of three things: respite beds in long-term care institutions, sitter/attendant services or adult day care. There are those who argue, however, that respite is an outcome, not a service, and that caregivers should be a legitimate recipient of support services which provide the individual with the kind of respite they need.

NK: Help is not help if you don't want it, don't need it or get it from sources that make you feel bad.

National Caregiving Standards

ES: I think we need national standards and we need to ensure that these standards are monitored. If we aren't prepared to monitor it, we run the risk of repeating what is happening in the United States where they've had to develop new legislation which incorporates the establishment of fraud squads.