Can we move beyond burden and burnout to support the health and wellness of family caregivers to persons with dementia? Evidence from British Columbia, Canada

Abstract

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 ageing-in-place movement has had unintended negative consequences for family members who care for seniors. This paper outlines findings of a qualitative descriptive study to investigate the health and wellness and support needs of family caregivers to persons with dementia in the Canadian policy environment. Focus groups were conducted in 2010 with 23 caregivers and the health professionals who support them in three communities in the Southern Interior of British Columbia. Thematic analysis guided by the constant comparison technique revealed two overarching themes: (1) forgotten: abandoned to care alone and indefinitely captures the perceived consequences of caregivers' failed efforts to receive recognition and adequate services to support their care-giving and (2) unrealistic expectations for caregiver self-care relates to the burden of expectations for caregivers to look after themselves. Although understanding about the concepts of caregiver burden and burnout is now quite developed, the broader sociopolitical context giving rise to these negative consequences for caregivers to individuals with dementia has not improved. If anything, the Canadian homecare policy environment has placed caregivers in more desperate circumstances. A fundamental re-orientation towards 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. This re-orientation 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 institutionalised.