Engaging members of a UK Somali community in identifying dementia research priorities: an example of adapting James Lind Alliance methods

Abstract Background Dementia affects memory, problem-solving, language and behaviour. Engaging the public, including minority communities, in setting research priorities supports relevant, equitable research. Some ethnic minority communities face increased dementia risk, and barriers to diagnosis and culturally-appropriate care. A UK James Lind Alliance (JLA) dementia research priority setting exercise reported limited involvement of ethnic minority communities. Therefore, this study aimed to engage UK Somali community members to identify their brain health and dementia research priorities and compare these with the JLA top priorities. Methods In 2025, we adapted the JLA approach using qualitative, participatory methods. Our four-phase approach included: (1) an initial workshop to engage community members, listen to lived experiences, provide information and identify uncertainties about dementia and brain health. (2) a rapid evidence search based on uncertainties identified (3) a second workshop for prioritising (4) a final workshop to confirm a ‘top 10’. Uncertainties from Workshop 1 were analysed thematically and iteratively by an expert steering group. Votes for top priorities were counted. A focused content analysis highlighted rationales for priorities. Results Thirty-two people of Somali heritage attended Workshop 1, 15 of these were selected to attend Workshops 2 and 3. The top 10 priorities spanned key domains: awareness and risk reduction (three priorities), facilitating diagnosis (two priorities), improvingliving with dementia, coping, and caregiving (five priorities). Overlaps with the JLA top 10 were: improving diagnosis access, enabling living well, good care for people with dementia, carer support. Priorities about improving awareness, culturally-informed interventions to promote brain healthy diets, and the impact of faith on people affected by dementia, had not been included in the JLA top 10. Conclusions Uniquely, this study developed dementia and brain health research priorities with UK Somali community members, demonstrating that involving this community in dementia research priority-setting is possible. The additional dementia research priorities should be considered alongside the JLA priorities to inform dementia research and service improvement agendas. Our four-phase approach can be incorporated into JLA priority setting partnerships to enhance inclusion of ethnic minority communities.