Multi-Stakeholder Engagement to Promote Inclusive Research Practices

Creating a roadmap for inclusive recruitment practices in dementia research, addressing the experiences of ethnic-minoritised groups.

There must be greater participation of ethnically-minoritised individuals in dementia research to understand the reasons for differences in vulnerability and survival and to provide improved interventions. The objective of the project was to promote inclusivity in dementia research by developing recommendations for inclusive recruitment practices that address the challenges faced by researchers and ethnically diverse communities using collaborative methods.

The project consisted of three main activities:

• Conducted focus groups with Black and South Asian community members in the UK to identify barriers to participating in dementia research
• Surveyed international researchers about their current recruitment practices to identify barriers to inclusive recruitment
• Co-designed, with community collaborators, an event that gathered researchers and other stakeholders to ideate and co-produce recommendations for inclusive recruitment practices for dementia research that articulates what works to address the challenges experienced and why.

The study revealed that community members faced barriers such as lack of knowledge about dementia and research participation opportunities, language barriers, stigma, and historical medical/institutional racism. Researchers identified barriers including lack of skills, knowledge, and resources, as well as time and funding to effectively engage with ethnically diverse communities.

The findings were documented for publication in a high-impact journal and were presented at the EU-Mind European Conference in September 2024. The participants in this project expressed a desire to remain involved in this research in the future, particularly community members, through the establishment of a network.