Four UBC researchers have teamed up to investigate the experiences and support needs of family caregivers to people with dementia.
The researchers — Carole Robinson, Associate Professor of Nursing, Meredith Lilly, Faculty Associate at the Centre for Health Services and Policy Research, Susan Holtzman, Assistant Professor of Psychology, and Professor Joan Bottorff, Director of the Institute for Healthy Living and Chronic Disease Prevention — hope their research will influence the strategic planning currently underway to address the burgeoning needs of persons with dementia and their family caregivers.
“After more than a decade of concerted effort by policy-makers in Canada and elsewhere to encourage older adults to age at home, there is recognition that the aging-in-place movement has had unintended negative consequences for family members who care for these seniors,” says Lilly.
“Unfortunately, the Canadian home care policy environment has placed caregivers in more desperate circumstances. It prevents caregivers from successfully addressing their health and wellness needs by embedding incentives to declare burnout as their only means of receiving assistance.”
As part of the research initiative, focus groups were conducted in 2010 with 23 caregivers, and the health professionals who support caregivers in three BC Southern Interior communities.
Two major themes emerged from the analysis of the focus group research:
- Caregivers are often abandoned to care alone for their loved ones and they receive very little recognition or the adequate services required to support their caregiving.
- Unrealistic expectations for caregivers to look after their own health while in the midst of intense caregiving for a loved one, which adds to the burden they experience.
“A fundamental reorientation toward caregivers and caregiver supports is necessary, beginning with viewing caregivers as a critical-health human resource in a system that depends on their contributions in order to function,” says Robinson. “This reorientation can create a space for providing caregivers with preventive supports, rather than resorting to costly patient care for caregivers who have reached the point of burnout and care recipients who have been institutionalized.”
As a next step, the research team is awaiting funding for a project designed to support couples where one person has early stage dementia. The aim of this project is to nurture the couple relationship in a way that supports the health and well-being of both the caregiver and the spouse with dementia.
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