A multiperspective investigation of the underrepresentation of minoritized ethnic participants in dementia research and proposed strategies to improve inclusive recruitment practices
Natalie L. Marchant, Elahi Hossain, Shiping Chen, Geeti Kabra, Laiba Ahmad, Ione Fraser, Lorraine Cezair‐Phillip, Aikaterini Fotoupoulou, Harpreet Kaur Sihre, Naaheed Mukadam, Anna L. Cox
Abstract
INTRODUCTION: Minoritized ethnic populations are underrepresented in dementia research despite having differing risk and prognosis profiles. We sought to gain multiperspective insights about why minoritized ethnic groups are underrepresented in dementia research. METHODS: Qualitative data were collected from focus groups with individuals from minoritized ethnic backgrounds in the UK (n = 13) and open-ended survey responses from international dementia researchers (n = 54). Facilitators and barriers to the inclusion of minoritized ethnic populations were examined using the COM-B model of behavior. RESULTS: Community member barriers included lacking knowledge about dementia and research opportunities, language, stigma, and medical/institutional racism. Facilitators included using varied recruitment strategies, culturally appropriate language, communal research, and salient outcomes. Researcher barriers included lacking skills, knowledge, materials, time, and funding to sustainably engage with minoritized ethnic communities. Facilitators included culturally sensitive, community-centered approaches in diverse research groups. DISCUSSION: Our study contributes multiperspective insights about the underrepresentation of minoritized ethnic populations in dementia research and proposes strategies to improve inclusive research practices. HIGHLIGHTS: Minoritized ethnic communities are underrepresented in dementia research. Community members want varied, culturally tailored recruitment strategies and communal research with salient outcomes. Researchers describe lacking skills, time, and funding for sustainable engagement. Targeted recruitment campaigns and inclusive research programs are recommended.