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A Roadmap of Noninstitutional Living Options for People with Dementia: “Don’t Fence Me In”

Published online by Cambridge University Press:  20 November 2024

Maude Lévesque Open the ORCID record for Maude Lévesque [Opens in a new window]  and
Margaret Oldfield
Maude Lévesque*
Affiliation:
Université du Québec à Montréal (UQÀM), 455, boulevard René-Lévesque Est, Montréal, QC H2L 4Y2, Canada
Margaret Oldfield
Affiliation:
Independent Social Scientist & Disability Scholar, 407-550 Ontario St., Toronto, ON M4X 1X3, Canada
*
Corresponding author: La correspondance et les demandes de tirésàpart doivent être adressées à : / Correspondence and requests for offprints should be sent to: Maude Lévesque, Université du Québec à Montréal (UQÀM), 455, boulevard René-Lévesque Est, Montréal, QC H2L 4Y2 (Email: [email protected]).
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Abstract

Canadians overwhelmingly do not want to live in long-term care institutions (LTCIs) when they age; yet many end up there for lack of home care, because family care partners burn out, or because they and their professional advisors are unaware of alternatives to institutions. Not only is institutional dementia care riven with problems, it segregates disabled people, thereby abrogating human rights. Because systemic ageism and ableism cloud seniors’ 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 seniors? 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 senior citizens – not just the current generation, but those to come, including ourselves.

Résumé

Résumé

Les Canadiens affirment ne pas vouloir vivre dans des centres de soins de longue durée en vieillissant. Toutefois, beaucoup finissent par s’y retrouver faute de soins à domicile, parce que les aidants familiaux s’épuisent, ou parce que leurs professionnels ne sont pas au courant des alternatives aux institutions. Non seulement les soins institutionnels pour la démence posent problème, mais ils ségréguent aussi les personnes handicapées. En raison de l’âgisme et du capacitisme, les institutions restent l’option par défaut pour les Canadiens atteints de démence. Pourtant, des décennies de désinstitutionnalisation ont permis aux jeunes Canadiens en situation de handicap de vivre dans la communauté. Cet article se veut une description des alternatives aux soins institutionnels pour la démence. Cette discussion est appuyée d’un guide pratique pour envisager toutes les options de soins pertinentes. Le texte soutient un changement de paradigme dans la manière dont le Canada sert ses citoyens âgés.

Keywords

At-home careDementia careNoninstitutional alternativesPeople living with dementiaSupportive decision makingTransition planningAlternatives non institutionnellesPrise de décision assistéeSoins à domicileSoins à la démencePersonne vivant avec une démencePlanification de la transition
Type
Article
Information
Canadian Journal on Aging / La Revue canadienne du vieillissement , First View , pp. 1 - 10
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Copyright
© Canadian Association on Gerontology 2024

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