A roadmap of noninstitutional living options for people with dementia: “Don’t fence me in.”

Abstract

Canadians overwhelmingly do not want to live in long-term-care (LTC) facilities when they age; yet many end up there for lack of homecare, because family caregivers burn out, or because they and their professional advisors are unaware of alternatives to institutions. Not only is institutional dementia care problem-driven, it segregates disabled people, thereby abrogating human rights. Because systemic ageism and ableism cloud elder care, institutions remain the default option for Canadians with dementia. Yet, decades of deinstitutionalization enabled younger disabled Canadians to live in the community with supports. Why not elders? We describe a plethora of noninstitutional dementia-care alternatives. We then present a roadmap for considering all relevant care options in service plans, one that incorporates supported decision-making by people with dementia. We propose a paradigm shift in how Canada serves its elder citizens—not just the current generation, but those to come, including ourselves.