Dementia research must include voices of those with lived experience

A new Canadian study has found that people living with dementia (PLWD) are often excluded from research due to assumptions of incapacity and variations in institutional processes. The authors argue that with rights-based, supported approaches, PLWD can participate meaningfully in decisions that affect their lives.

“To ignore the PLWD from research is to exclude a critical piece of information that may affect research outcomes,” says Jim Mann, an advocate living with dementia and co-researcher in the study.

The study, based on interviews with dementia researchers across Canada, reveals how a range of research processes such as funding, ethics approval, participant recruitment and forms of involvement often err on the side of protectionism, inadvertently silencing the voices of those most affected. The study’s authors call for standardized, rights-based guidance across Canadian institutions to support the meaningful inclusion of PLWD.

“Our findings show that exclusion is rarely inevitable; it is designed into systems and thus, can also be redesigned through intentional, inclusive and rights-based approaches,” says Factor-Inwentash Faculty of Social Work Professor Amanda Grenier of the Institute for Life Course Studies at the University of Toronto. “Inclusion is not just ethical; it is a legal and human rights imperative under frameworks like the UN Convention on the Rights of Persons with Disabilities.”

The team offers six actionable recommendations for Canadian research institutions, including:

• studying the effects of excluding PLWD on research quality and participant wellbeing;
• revising research processes to reflect supported decision-making and ongoing consent;
• developing guidelines to facilitate participation compliant with Canadian laws;
• offering a range of research roles that recognize and include PLWD;
• applying equity, diversity, and inclusion frameworks to achieve comprehensive inclusion; and
• educating ethics boards, institutions, and emerging researchers on dementia, consent, and human rights to ensure full and meaningful participation of PLWD.

Strategies for inclusion identified by the study’s authors include involvement in capacities such as co-design, advisory committees, flexible and supportive consent procedures, and relationship-building with participants and care providers. By adopting flexible and creative research practices, and treating consent as a supported ongoing conversation, investigators can ensure that the insights gathered reflect the knowledge and insights of PLWD as well as needs that fluctuate over time.

The study’s authors argue that by implementing the recommendations Canadian research institutions can ensure that people living with dementia are recognized as meaningful contributors, while also reducing institutional risk and enhancing the relevance and quality of dementia research. This is best summed up by one of the researchers interviewed for the study, who said: “There’s a huge practice gap that needs to change”

Select quotes from Canadian dementia researchers who participated in the study

“I realized…staff were always wanting to put the most able residents into the program. So, there was that auto exclusion […] this idea that people who had more advanced symptoms…wouldn’t enjoy it or wouldn’t be able to participate.”

“Ethics boards and ethics reviewers are wanting to be very protective. They run under a risk model. Minimize, risk, protect, protect, protect…. [In] community driven research, we respect the fact that people live at risk. People can choose to have risk. That’s their right, that’s their choice.”

“It’s really important that research is grounded in [lived] experience…and the troubling issues for them [PLWD]. That should feed into decision-making about what we’re going to do and what type of outcomes we’re going to look at in a study”, noted another researcher.

Grenier A, O’Connor D, Tamblyn Watts L, et al. Consent and Meaningful Inclusion of People Living with Dementia: Insights from Canadian Dementia Researchers. Canadian Journal on Aging / La Revue canadienne du vieillissement. Published online 2026:1-12. doi:10.1017/S0714980825100470

Amanda Grenier joined the Factor-Inwentash Faculty of Social Work in July 2019 as the Norman and Honey Schipper Chair in Gerontological Social Work. She is also appointed to Baycrest Hospital. Previously she was a Professor in Health, Aging and Society, the Gilbrea Chair in Aging & Mental Health, and the Director of the Gilbrea Centre at McMaster University. Prior to that she was a Faculty member in the McGill School of Social Work.