“They are mad and must be hidden or locked away”: A qualitative study of community members’ perception about dementia from African countries participating in the READD‐ADSP Project

Abstract INTRODUCTION Cultural narratives significantly shape dementia perception. This study explored knowledge and beliefs regarding dementia among Community Advisory Board (CAB) members in Nigeria, Ghana, and Cameroon. METHODS Ten focus group discussions were conducted with 83 CAB members after a training program within the Recruitment and Retention for Alzheimer's Disease Diversity Genetic Cohorts in the Alzheimer's Disease Sequencing Project (READD‐ADSP). Transcribed sessions were analyzed to identify key themes regarding their understanding and perceptions of dementia. RESULTS Analysis revealed three themes. First were misconceptions about dementia‐related symptoms, etiology, and risk factors. Second, there was a linguistic gap in terminology; local languages lack specific dementia terms, which leads to resorting to stigmatizing labels like “madness.” Third, there is stigma related to dementia, which drives the concealment of affected individuals, despite some awareness regarding supportive care. DISCUSSION Addressing knowledge gaps and developing culturally sensitive lexicons is urgent to correct misconceptions, inform culturally appropriate recruitment strategies, and foster inclusivity in African communities.