Promoting non-institutional living options for Canadians with dementia: A paradigm shift


Margaret Oldfield, Independent

Most Canadians do not want to live in nursing homes when they age (NIA, 2021); yet many end up there because of Canadian politicians’ reluctance to fund alternatives, in contrast to most OECD countries (Drummond, 2020). Non-institutional alternatives are cheaper, safer, and have higher rates of satisfaction (Estabrooks et al., 2020). We explore these alternatives in light of the ongoing paradigm shift in dementia care. Our work draws on tenets of critical disability studies and gerontological social work. We also draw on the concept of supported decision-making (Alzheimer Europe, 2017). This approach empowers people with cognitive impairments to preserve their agency, in contrast to the substitute decision-making that currently dominates in Canada. Although nearly all Canadians over 65 polled in 2021 (97%) reported not wanting to reside in nursing homes (NIA, 2021), little has been done to challenge the institutional model of dementia care: locked wards in facilities segregated by age and disability. The model is not only rife with problems but unanimously repudiated as a last resort and unimaginable end of life (Lévesque, 2022). Segregating disabled people, including those with dementia (Shakespeare et al., 2017), contravenes the United Nations Convention on Rights of Persons with Disabilities, a treaty that Canada signed. Yet institutional dementia care remains clouded by systemic ageism and ableism. Beginning in the 1950s, Canada’s deinstitutionalization movement (Panitch, 2008) created non-institutional alternatives that enabled younger people with cognitive impairments to live in the community with supports. Do elders with dementia not deserve the same? We provide evidence that the institutional model of dementia care harms Canadians with dementia. This harm is not only based on epidemiological evidence, but on the psychological and moral distress experienced by residents, staff, and family members. To remedy this harm and distress, we describe more humane alternatives for supporting Canadians with dementia, in three categories: (a) minimal in-home supports, (b) extensive domestic and medical in-home supports, and (c) out-of-home supports. This presentation fits the themes of Congress 2024 and CSA 2024. Despite disabled people being Canada’s largest minority group, at 27% (Statistics Canada, 2023), disability issues beyond basic accessibility are often ignored. The disability-rights movement began over 50 years ago. A newer social movement, opposing dementia stigma and led by people with the condition, began over 20 years ago. These anti-ableism and anti-ageism movements push the paradigm shift in how Canada serves its citizens with dementia. Together we can change our shared future—not just for the current elder generation but for generations to come, including ourselves.

Non-presenting authors: Maude Lévesque, Université du Québec à Montréal

This paper will be presented at the following session: