Tag Archives: InclusiveResearch

“But we, as Black people, are never told by GPs . . . or never told by hospitals . . . ”

Within the UK where Dementia is the leading cause of death, minoritized ethnic groups have a 20% higher risk of dementia, younger age of diagnosis, and die earlier after diagnosis compared with ethnically White groups, yet they are critically under-represented in research. Only 39.4% of clinical trials report participant ethnicity, and just 11.4% of UK participants come from non-white backgrounds. This significant under-representation limits the generalization of research findings, compromising effective dementia care and treatment development for all communities.

Our recent multiperspective study, published in Alzheimer’s & Dementia, provides critical insights from UK-based minoritized ethnic community members and international dementia researchers. We explored barriers to research participation and propose clear, culturally sensitive solutions to enhance inclusivity.

Key Barriers Identified:

• Community Members:
  • Limited knowledge of dementia and research participation routes.
  • Cultural stigma and fear around mental health conditions.
  • Experiences of systemic racism eroding trust in health institutions.
• Researchers:
  • Insufficient funding, time pressures, and lack of culturally tailored materials.
  • Challenges engaging diverse communities through traditional recruitment methods.

Proposed Solutions:

• Culturally Tailored Recruitment Campaigns: Utilizing trusted community representatives, culturally sensitive language, and diverse offline and online communication channels.
• Community-Centered Research Programs: Engaging communities from initial study design to dissemination, fostering trust, relevance, and sustainable partnerships.
• Dedicated Funding and Training: Investing in resources, cultural competence training, and inclusive team-building to support equitable research practices.

By acting on these recommendations, researchers can actively dismantle barriers and build meaningful, inclusive research relationships, ultimately improving dementia care and outcomes for minoritized ethnic communities.

Read the full open-access paper here.

Marchant NL, Hossain E, Chen S, et al. A multiperspective investigation of the underrepresentation of minoritized ethnic participants in dementia research and proposed strategies to improve inclusive recruitment practices. Alzheimer’s Dement. 2025; 21:e70129. https://doi.org/10.1002/alz.70129