Timeline
September 2020 – May 2026
Research is key to changing the conversation, the experience and the future for people affected by dementia. There is a growing recognition that people living with dementia and care partners can meaningfully contribute to research beyond simply participating in studies. This collaboration with the Alzheimer Society of B.C created a series of resources to support and encourage the inclusion of people with lived experience of dementia on research teams, as collaborators. Dementia-inclusive research actively engages people with lived experience as collaborators and advisors and promotes shared decision-making throughout the research process
Part one of this project focused primarily on the inclusion of people with lived experience of dementia in quality of life and social science research (September 2020 – May 2022), whereas part two focused on inclusion within biomedical research projects (April 2025 – May 2026).
Together, the projects investigate how research processes, cultures, and tools can better recognize people with lived experiences as experts and collaborators whose knowledge strengthens research relevance, ethics, and impact.
In the first series, the focus was on establishing shared principles and values for dementia-inclusive quality of life and social science research. The second series (2025-2026) built on this foundation and shifts towards biomedical research contexts. This work emphasises how inclusive practices can be embedded across the full lifecycle of biomedical research in ways that are practical and considerate.
This work is grounded in participatory engagement that brings together people living with dementia, care partners, researchers, designers, and practitioners. Across both series, engagement was designed to create space for shared learning, dialogue, and refection with an emphasis on collaboration.
Participants were invited to contribute knowledge from their own lived experiences, professional practice, and research expertise, and to consider how research processes themselves shape inclusion.
Design-led methods supported multiple ways of thinking and communicating, helping surface insights through collective dialogue and visioning. Conversations addressed how collaboration is influenced by timelines, communication styles, accessibility, institutional expectations, and power dynamics. The focus was on how inclusive practices can be supported across different stages of research, from early framing and set-up through to analysis and communication.
The first series (2020-2022) brought together thirty-eight participants in a virtual workshop held as part of the Dementia Lab Conference. This included people from diverse backgrounds, such as researchers, artists, designers, and people with lived experience. The workshop was designed around the theme Everyone is invited to the table where we used visual cues, prompts, and drawings to encourage collaboration.
The second series (2025-2026) built on this approach through two focused virtual workshops and an ongoing advisory group composed of people living with dementia, care partners, and biomedical researchers, allowing for deeper engagement and sustained co-development within biomedical research contexts.
This collaboration resulted in a set of co-designed resources for researchers and people with lived experience to promote and support dementia-inclusive research. The first series resulted in a foundational workbook on dementia-friendly participatory research practices titled, “Collaborate, Gather Share”, alongside a webinar series led by people with dementia who are co-researchers and a brochure co-designed with people with lived experience and shared through the Alzheimer Society of B.C. The second series builds on this foundation by developing two complementary resources: a guide for biomedical researchers by phase and a booklet for people living with dementia and care partners focused on access, agency, and pathways into collaborative research. Together, these resources reflect a shift from articulating shared values toward supporting application within biomedical research contexts.
Insights generated through workshops and advisory collaboration have been translated into accessible resources that emphasize collaboration as an ongoing, relational practice rather than a fixed set of steps.
Knowledge sharing extends across formats and audiences to support broader uptake and continuous learning within and beyond academic research settings. This aims to support both researchers and people with lived experiences in navigating research spaces with clarity, care, and agency.
To learn more visit:
