Consent and Meaningful Inclusion of People Living with Dementia: Insights from Canadian Dementia Researchers

Abstract

Background: People living with dementia (PLWD) want-and have the right-to participate in research that impacts them. However, barriers in legislation, institutional practices, and/or biases may jeopardize inclusion. Objective and Methods: Interviews with 33 Canadian dementia researchers were conducted to explore understandings of research consent with regard to dementia, research practices, and approaches in everyday research contexts. Findings: Analysis of these interviews revealed challenges in negotiating the space between best practices and institutional requirements; gaps in knowledge, procedures, and guidelines on inclusion and consent; tensions regarding who should be involved in decision making; and how assumptions of presumed incapacity and/or the ‘protection’ of vulnerable groups create and/or sustain the exclusion of PLWD from research. Discussion: Moving forward, findings suggest that advancing the meaningful inclusion of PLWD in Canadian dementia research will require clear, consistent standardized guidelines, flexible and ongoing consent processes, accessibility accommodations, and a stronger focus on rights-based practices.