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

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.