Consent and Meaningful Inclusion of People Living with Dementia
Insights from Canadian Dementia Researchers
Bibliographic Data
| ID | 22415744 |
|---|---|
| Authors | Amanda Grenier (0000-0003-2251-6035, University of Toronto, corresponding author), Deborah O’connor (0000-0003-0136-2575, University of British Columbia), Laura Tamblyn Watts (CanAge Inc.), Esmé Sanders (University of Toronto), Daphne Imahori (University of Toronto), Krista James (Peter Allard School of Law, The University of British Columbia), Jim Mann (0000-0001-7048-7844, University of British Columbia) |
| Year | 2026 |
| Volume | 45 |
| Issue | 2 |
| Pages | 191-202 |
| Publication date | 2026-06-01 |
| Peer Reviewed | Yes |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Canadian Journal on Aging / La Revue canadienne du vieillissement (JOURNAL) |
| Journal identifiers | ISSN: 0714-9808 • E-ISSN: 1710-1107 |
| Publisher | Cambridge University Press (CUP) (PUBLISHER) |
| DOI | 10.1017/s0714980825100470 |
| PMID | 41640173 |
| OpenAlex | W7128064686 |
| Language | EN |
| References cited | 18 |
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.
Dementia · Focus group · Informed consent · Ethics in Clinical Research · Healthcare Decision-Making and Restraints · Mental Health and Patient Involvement
Interviews as Activated Storytelling
Conceptualizing Inclusive Research with People with Intellectual Disability
Dementia prevention, intervention, and care
A worked example of Braun and Clarke’s approach to reflexive thematic analysis
The Active Interview
Stigma, discrimination and agency
Using thematic analysis in psychology
How Many Interviews Are Enough
| Citation velocity | historical |
|---|---|
| Highly cited | No |