Mindful Conversations: Black Communities Talk Dementia and Brain Health Focus Group Report

DOI

Mindful Conversations: Black Communities Talk Dementia and Brain Health was a three-part focus group held on February 16, 2026, at the Halkevi Community Centre in Dalston, London. Facilitated by Dr. Nathasia Mudiwa Muwanigwa in partnership with the Community African Network and Sarah Patrick (MRC Protein Phosphorylation and Ubiquitylation Unit, University of Dundee), the session brought together 15 community members with lived experience of dementia to explore how the condition is perceived and discussed within Black African and Caribbean communities.The focus group utilized creative, person-centered methodologies, including:The Exchanges Art Card Activity: Testing a culturally grounded tool to inspire dialogue and storytelling around brain health.Language Mapping: Identifying terms that empower or alienate community members, revealing a strong rejection of clinical labels like "sufferer" or "decline" in favor of compassionate, person-first language.Thematic Breakout Discussions: Uncovering community perceptions that often view dementia through spiritual or supernatural lenses, which can drive stigma and social isolation.Impact and Outcome: The initiative demonstrated the power of culturally rooted engagement, with 100% of participants reporting they felt listened to and respected, and 86% leaving more comfortable discussing dementia. The findings outlined in this report provide a roadmap for redesigning dementia research and health engagement to be more inclusive and equitable for underrepresented communities.

Identifier
DOI https://doi.org/10.5522/04/32008182.v1
Related Identifier HasPart https://ndownloader.figshare.com/files/63718668
Metadata Access https://api.figshare.com/v2/oai?verb=GetRecord&metadataPrefix=oai_datacite&identifier=oai:figshare.com:article/32008182
Provenance
Creator Muwanigwa, Nathasia; Patrick, Sarah
Publisher University College London UCL
Contributor Figshare
Publication Year 2026
Rights https://creativecommons.org/licenses/by-nd/4.0/; http://purl.org/coar/access_right/c_abf2
OpenAccess true
Contact researchdatarepository(at)ucl.ac.uk
Representation
Language English
Resource Type Report
Discipline Life Sciences; Medicine; Neurosciences