Collaborative Minds: Building more inclusive biomedical dementia research

Research plays an important role in improving the lives of people affected by dementia. However, there is increasing recognition that this goes both ways – that people living with dementia and care partners can contribute to research in meaningful ways that go beyond simply participating in studies and and shifts toward true collaboration. While that collaboration is less common in biomedical research, there is a growing interest in creating more inclusive and meaningful opportunities to be involved.

To help bridge this gap, we partnered with the Health Design Lab at Emily Carr University of Art + Design and the University of Victoria to bring together biomedical dementia researchers and people affected by the disease to discuss inclusive research practices. Participants shared perspectives, identified challenges and explored practical ways to strengthen collaboration. These discussions informed the creation of two complementary guides:

Collaborative minds: Shaping biomedical research with your lived experience of dementia
The guide is designed for people affected by dementia who are curious about contributing to biomedical research beyond being a study participant. It explores what collaboration in biomedical research can look like and highlights different ways people can engage.

Collaborative minds: A guide to meaningfully engaging people with lived experience of dementia in biomedical research

This guide supports biomedical researchers in understanding why and how to involve people with lived experience in their studies. It offers practical suggestions and consideration for embedding dementia-inclusive practices across the research process.

Alongside the guides, we’ve also developed supporting webpages with additional information and resources related to collaborative dementia research.

These resources aim to support more inclusive and collaborative approaches to research by:

• Highlighting the value of the lived experience perspective
• Offering practical strategies for engagement
• Encouraging connections between researchers and the dementia community

We hope these resources spark curiosity about what collaboration in dementia research can look like. They are intended to encourage new connections, shared understanding and more inclusive approaches to research.

Explore the guide and supporting resources here.