The Urgent Call for Inclusive Dementia Research Practices in Canada

A groundbreaking study published on February 5, 2026, in the Canadian Journal on Aging has ignited a national conversation among Canadian researchers about the exclusion of people living with dementia (PLWD) from studies that directly affect their lives. Led by Dr. Amanda Grenier from the University of Toronto's Factor-Inwentash Faculty of Social Work, the research draws from in-depth interviews with 33 dementia researchers across Canada. These experts revealed systemic barriers that often lead to the automatic sidelining of PLWD, based on assumptions of incapacity rather than individual assessments. The findings underscore a critical need for standardized, rights-based guidelines to foster meaningful participation, aligning with international human rights standards like the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).

This push comes at a pivotal time, as Canada's dementia research landscape—dominated by leading universities such as the University of Toronto, University of British Columbia (UBC), and University of Waterloo—grapples with how to balance ethical protections and true inclusivity. By prioritizing lived experiences, researchers argue, studies can yield more relevant outcomes, from better treatment designs to policy recommendations that reflect real-world needs.

Dementia in Canada: Scale of the Challenge

Canada faces a mounting dementia crisis, with approximately 772,000 individuals living with the condition as of early 2025, according to the Alzheimer Society of Canada. This number translates to more than 414 new diagnoses every single day, and projections indicate a staggering 187% increase to 1.7 million cases by 2050. These figures highlight dementia not just as a health issue but a profound societal one, disproportionately affecting older adults, women, and ethno-racial communities.

Prevalence doubles every five years after age 65, reaching about 25% among those 85 and older. Yet, despite this scale, research often overlooks diverse voices, particularly from Indigenous, immigrant, and racialized groups who experience higher rates but face cultural and access barriers. Canadian universities are at the forefront, with hubs like the Canadian Consortium on Neurodegeneration in Aging (CCNA) coordinating multi-site efforts to address prevention, diagnosis, and care.

Why Meaningful Inclusion is Essential for Quality Research

Inclusive dementia research practices mean actively involving PLWD as co-researchers, advisors, or participants throughout the study lifecycle—from design to dissemination. This approach recognizes capacity as fluctuating rather than binary, allowing for supported decision-making where family or proxies assist without overriding autonomy.

Exclusion harms research validity; without PLWD input, findings may miss key nuances, like daily challenges or preferences for interventions. Ethically, it's a rights imperative: PLWD have the same right to contribute to knowledge impacting them. Legally, Canadian laws presume capacity unless proven otherwise, yet practice lags. Universities like UBC and the University of Toronto are pioneering co-design methods, where PLWD shape questions, enhancing relevance and trust.

Benefits extend to researchers too: inclusive studies attract diverse funding, such as the Alzheimer Society Research Program's (ASRP) $5.1 million invested in 37 projects in 2025, many targeting equity.

Challenges Uncovered: Insights from Canadian Dementia Researchers

The study's interviews painted a vivid picture of hurdles. Researchers described Research Ethics Boards (REBs) varying wildly by institution—some auto-flag dementia studies as high-risk, demanding proxy consent without capacity checks. One participant noted, "Ethics boards... run under a risk model. Minimize risk, protect, protect, protect."

Key challenges include:

• Presumed Incapacity: Automatic exclusion based on diagnosis, ignoring individual abilities.
• Inconsistent Guidelines: Reliance on Tri-Council Policy Statement (TCPS 2) without dementia-specific clarity.
• Gatekeeping: Families or care staff blocking access, fearing stress.
• Resource Strain: Time-intensive accommodations like simplified materials deter inclusion.
• Self-Censorship: Anticipated REB pushback leads researchers to avoid PLWD altogether.

These issues span disciplines, from social sciences at the University of Toronto to clinical work at UBC.

Spotlight on Existing Initiatives and Guidebooks

Progress is underway. The Research Institute for Aging (RIA) at the University of Waterloo released the "Inclusive Research Guidebook" in 2024, co-designed with PLWD from ethno-racial communities. It offers practical steps: building trust through storytelling, adapting methods for cultural relevance, and addressing power imbalances.

CCNA's Inclusion, Diversity, Equity, and Accessibility (IDEA) initiative supports diverse researchers and projects. ASRP funds inclusive efforts, like Simon Fraser University's work on dementia-friendly urban design and Toronto Metropolitan University's (TMU) neighbourhood accessibility studies. Alzheimer Society of British Columbia promotes "dementia-friendly research," emphasizing engagement at every stage.

These resources provide templates for ethics applications and consent processes, proving scalable change is possible. For deeper dives, explore the RIA Guidebook or CCNA's platform.

Canadian Universities Leading the Charge

Higher education institutions are pivotal. The University of Toronto's Toronto Dementia Research Alliance unites hospitals and faculty for collaborative trials. UBC's Djavad Mowafaghian Centre advances inclusive Alzheimer's studies, including Asian ancestry cohorts.

At U Waterloo's Schlegel-UW Research Institute, RIA bridges academia and care. Nipissing University leads rare dementia support, while U Calgary's Hotchkiss Brain Institute tackles cognitive disorders holistically. TMU emphasizes diversity in aging research.

These centers not only conduct studies but train next-gen researchers in equity. Aspiring academics can find roles via higher ed research jobs or faculty positions focused on neurodegeneration.

Actionable Recommendations from the Study

The researchers outline six steps for transformation:

• Research exclusion's impacts on PLWD wellbeing and study quality.
• Revise REB processes for ongoing, supported consent.
• Create national guidelines compliant with Canadian capacity laws.
• Diversify roles for PLWD, from advisors to co-investigators.
• Integrate EDI frameworks with universal design.
• Educate REBs, mentors, and students on rights-based practices.

Implementing these requires institutional buy-in, like dedicated funding for accommodations. Jim Mann, a co-researcher living with dementia, stresses: "To ignore PLWD from research is to exclude a critical piece of information."

Career Opportunities in Inclusive Dementia Research

Canada's research ecosystem offers robust prospects. ASRP and Brain Canada fund early-career grants, ideal for postdoctoral roles via higher-ed postdoc jobs. Universities seek lecturers and professors specializing in gerontology—check lecturer jobs or professor jobs.

Skills in EDI, qualitative methods, and community engagement are prized. Craft a standout academic CV highlighting inclusive projects. For mentorship insights, visit Rate My Professor.

Photo by Andy Holmes on Unsplash

Future Outlook: Toward Equitable, Impactful Research

With federal investments exceeding $600 million since 2015 via the Public Health Agency of Canada, momentum builds. CCNA Phase III emphasizes neurodegeneration themes with EDI baked in. By 2030, standardized protocols could normalize PLWD involvement, yielding breakthroughs in prevention and care.

Stakeholders—from universities to policymakers—must collaborate. Researchers urge viewing inclusion as enhancing rigor, not risk. For those in higher ed, this shift opens doors to meaningful careers advancing human dignity.

Discover more at higher ed jobs, career advice, university jobs, or post your opening via recruitment. Engage with peers on Rate My Professor.