Background: There is increasing recognition that people living with dementia and care partners can contribute meaningfully to research beyond serving as study subjects, including shaping research questions, processes and knowledge use. However, biomedical researchers may be less familiar with engaging people with lived experience. This gap presents an opportunity to strengthen dementia research by fostering dementia-inclusive practices. This project describes the development of complementary resources to support biomedical researchers and people affected by dementia in creating research processes and environments.
Methods: In June 2025, the Alzheimer Society of B.C., in partnership with the Health Design Lab at Emily Carr University of Art + Design, the University of Victoria and an advisory committee of biomedical researchers and people living with dementia, hosted two 90-minute virtual workshops. The workshops brought together biomedical dementia researchers and people affected by dementia from across British Columbia to share perspectives, challenges and practical strategies for inclusive research across the research lifecycle. Workshop insights, narratives and a comprehensive literature review on inclusive and patient-oriented research informed the development of two resources: a guidebook for biomedical researchers and a handbook for people affected by dementia.
Results: Participants included 19 biomedical researchers, seven people living with dementia and five care partners. The resulting resources support researchers, trainees, project managers and other research-adjacent professionals seeking to embed dementia-inclusive strategies into their work. Five phases for integrating inclusive practices are identified: (1) laying the groundwork for collaboration, (2) planning the study, (3) collecting data, (4) analyzing data and (5) sharing research findings. Each phase includes practical considerations, reflective questions and curated resources to support implementation within biomedical research contexts.
Conclusion: Collaborative approaches remain underutilized in biomedical dementia research due to its highly regulated nature. These resources position people affected by dementia as experts in their lived experience and emphasize the value of their contributions across all research phases. Supporting meaningful collaboration has the potential to enhance the relevance, inclusivity and impact of biomedical dementia research.