Cognitive Ableism in Supportive Community Care for People with Dementia


Katie Aubrecht, St. Francis Xavier University

Access to quality care at home for people with dementia is a health system challenge, a social problem and human rights issue. In the context of population aging and against the backdrop of a health system in crisis, direct funding has been offered as a policy solution and pandemic recovery measure. However, evidence suggests that people living with dementia who do not have legal decision-making capacity experience distinct barriers to accessing and using direct payment programs to their full health-promoting potential. Historically, guardianship, conservatorship and mental health laws have allowed for decisions to be made on behalf of people with dementia by guardians, trustees, or caretakers. Canada ratified the Convention on the Rights of Persons with Disabilities (CRPD), which views the ability to exercise legal capacity as a universal human right that applies to all persons, regardless of physical or mental disability. Under Article 12 of the CRPD, States parties are to “reaffirm that persons with disabilities have the right to recognition everywhere as persons before the law”. According to Article 12 (3), persons with disabilities have the right to continue to exercise their legal capacity, including making their own decisions, even if they require a certain degree of support to do so. In ratifying the CRPD, Canada acknowledged that his could be interpreted as requiring the elimination of substitute decision-making and included a reservation to continue to use substitute decision-making in situations it deemed appropriate. This presentation shares an interpretive sociological analysis of cognitive ableism as it was made to appear in academic literature and policy documents that were reviewed as part an applied health research study on equity in directly funded dementia care in Nova Scotia, Canada. Nova Scotia’s Supportive Care Program provides direct funding to socially and clinically vulnerable community dwelling older adults living with dementia who have substitute decision makers. Using a critical disability studies perspective, we traced a relationship between equity and cognitive ableism, where barriers to accessing, using and benefiting from directly funded community care were more often associated with clinical assessment procedures and protocols, such the Instrumental Activities of Daily Life Assessment, and information, assistance with interpretation, and decision support tools. We propose that the promise in direct funding may only be fully realized if there are also changes in how people are assessed and greater awareness and responsiveness to the decision-making support needs of people living with dementia. As and if Canada moves away from substitute decision-making significant changes in continuing care and the health system more broadly will also be required.

Non-presenting authors: Christine Kelly, University of Manitoba; Shala Koncton, Dalhousie University

This paper will be presented at the following session: