A groundbreaking Canadian study has recently illuminated a critical gap in dementia research: the systematic exclusion of people living with dementia (PLWD) from participating in studies that directly affect them. Despite living with the condition, PLWD are frequently overlooked in research due to assumptions regarding their capacity to consent and variations in institutional processes that err on the side of extreme protectionism. This exclusion not only silences essential lived experiences but also compromises the comprehensiveness and applicability of the research findings.
The study, which synthesized interviews with numerous dementia researchers throughout Canada, highlights how current methodologies—ranging from funding stipulations, ethics board protocols, participant recruitment strategies, to modes of involvement—are designed in ways that inadvertently marginalize PLWD. Institutional processes tend to default toward minimizing risk at the expense of inclusivity. While protective measures are critical in safeguarding vulnerable populations, these risk-averse frameworks often conflate protection with paternalism, thereby negating the autonomy and agency of individuals affected by dementia.
Importantly, the authors, including academic experts and advocates, emphasize that such exclusion is not an inevitable consequence of dementia-related impairments. Instead, exclusion is baked into systemic design and thus, is modifiable through intentional redesign. Adoption of rights-based, supported decision-making models offers a paradigm shift—treating inclusion not just as an ethical afterthought but as a fundamental human rights imperative anchored in international frameworks like the UN Convention on the Rights of Persons with Disabilities.
At the heart of this study’s findings lies an urgent call for Canadian research institutions to harmonize and standardize policies around inclusion of PLWD. The researchers propose a complete overhaul of research protocols that traditionally view dementia as a categorical barrier to participation. Instead, innovative approaches that accommodate fluctuating capacities, emphasize ongoing consent as a dynamic process, and recognize nuanced contributions in various research roles could radically transform dementia research landscapes.
One of the most salient recommendations includes fostering involvement of PLWD in capacities beyond mere participation—such as co-designing studies, serving on advisory committees, and shaping dissemination strategies. These roles empower individuals to share their lived experiences authentically and meaningfully, influencing research questions, methodology, and outcomes in ways that truly resonate with their realities. The researchers highlight that such involvement not only enhances research relevance but also potentially mitigates attrition and elevates participant wellbeing.
The study’s critique of ethics review boards is particularly striking. It reveals that ethical oversight bodies, though well-intentioned, often operate under rigid risk-averse mentalities, prioritizing protection over autonomy. This conservative stance, while understandable, results in procedural barriers that routinely exclude individuals with advanced symptoms or presumed incapacity. In contrast, community-driven research models embrace risk as an inherent aspect of life, respecting individual choices and acknowledging that living at risk is a human right deserving protection through informed support rather than blanket exclusion.
Further, the authors underscore the importance of educating ethics boards, academic institutions, and emerging researchers about dementia-specific consent challenges and human rights frameworks. Embedding such training could dismantle misconceptions around capacity, foster empathy, and cultivate institutional cultures that embrace complexity rather than shy away from it. This education would pave the way for more flexible, responsive consent procedures that accommodate the fluctuating cognitive abilities typical of dementia.
The study also sheds light on the detrimental impact exclusion has on research quality itself. By omitting voices of those most affected, research risks producing outcomes poorly calibrated to the needs and preferences of PLWD. This disconnect not only limits scientific validity but also constrains the scope of interventions that can be developed and implemented. Incorporating experiential knowledge of PLWD can enrich data quality, foster innovative problem-solving, and support development of interventions that respect dignity and autonomy.
Among the innovative consent strategies highlighted are supported consent models, where decision-making is facilitated through tailored communication methods, use of advocates, or ongoing consent conversations that respect changes in capacity over time. These flexible approaches align with emerging global best practices and reflect a necessary progression toward inclusiveness in research. The study’s authors advocate for adopting such practices as standard to ensure both ethical rigor and inclusivity.
An equally critical dimension advocated is the integration of comprehensive equity, diversity, and inclusion (EDI) frameworks. Such frameworks urge institutions to systematically address intersecting barriers that PLWD may face, including issues related to race, socioeconomic status, language, and geography. So far, many research designs unintentionally perpetuate disparity by failing to accommodate diverse experiences within the dementia community. EDI integration promises more representative and generalizable findings.
The study culminates in a compelling assertion: that inclusion of PLWD is not merely a moral consideration but a legal obligation aligned with Canadian and international human rights legislation. By operationalizing legal mandates through practical guidelines and institutional support structures, research institutions can simultaneously reduce liability risks and amplify the societal impact of dementia research.
As Jim Mann, an advocate living with dementia and co-researcher in the study, poignantly states, excluding PLWD “ignores a critical piece of information” that shapes research outcomes. The voices of those living with dementia carry unique insights that cannot be replicated through proxy reporting or caregiver accounts. Their participation is essential to closing the “huge practice gap” identified by the researchers and ensuring research that is both scientifically robust and socially just.
In conclusion, this seminal Canadian study provides a clarion call to revolutionize dementia research. Through embedding rights-based, supported decision-making, flexible consent, diverse participatory roles, institutional education, and EDI frameworks, the research community can bridge the divide between researchers and the dementia community. The transformation promises to elevate the quality, relevance, and impact of dementia research while honoring the dignity and agency of people living with dementia.
Subject of Research: Inclusion and consent of people living with dementia in Canadian dementia research.
Article Title: Consent and meaningful inclusion of people living with dementia: Insights from Canadian dementia researchers
News Publication Date: 5-Feb-2026
Web References: http://dx.doi.org/10.1017/S0714980825100470
Keywords: dementia research, consent, inclusion, supported decision-making, human rights, ethics boards, equity diversity inclusion, experiential knowledge, institutional processes, Canada
