“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.

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Publication Details

Journal
Alzheimer s & Dementia Behavior & Socioeconomics of Aging
Published
2026-10-15
DOI
https://doi.org/10.1002/bsa3.70114
Primary Topic
Dementia and Cognitive Impairment Research
Type
article
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article

“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

Maëlenn Guerchet, Alfred Kongnyu NJAMNSHI, Stella‐Maria Paddick, Michelle G. Nichols et al.
Alzheimer s & Dementia Behavior & Socioeconomics of Aging
Dementia and Cognitive Impairment Research
article

“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

Maëlenn Guerchet, Alfred Kongnyu NJAMNSHI, Stella‐Maria Paddick, Michelle G. Nichols, Eniola Cadmus, Ezinne Uvere, Sudha S. Seshadri, Chiamaka Edith Okereke, Jean N. Ikanga, Oyedunni Arulogun, Joshua Odunayo Akinyemi, Paul Olowoyo, Rufus Akinyemi, Adefolakemi Temitope Ogundele, Lawrence A. Adebusoye, Adesola O. Ogunniyi, Olorunyomi Felix Olorunsogbon, Ifeoma Adaigwe Amaechi, Godwin Osawaru Osaigbovo, Benedict NL Calys-Tagoe, Mayowa Ojo Owolabi, Dorcas Olujobi, David Musyimi Ndetei, Goldie S. Byrd, Biniyam Alemayehu Ayele, Mayowa Ogunronbi, Solomon Gyabaah, Olufisayo Oluyinka Elugbadebo, Emmanuel Uzodinma Iwuozo, Jeffery M. Vance, Kolawole Wahab, Adedoyin Oyeyimika Ogunyemi, Kazeem Akinwande, Christine Wayua Musyimi, Nathaniel Coleman, Abiodun Hamzat Bello, Damas Andrea, Olusegun Baiyewu, Babatunde Raphael Ojebuyi, Reginald Obiako, Nosakhare Osemwegie, Richard William Walker, Temitope Farombi, Albert Kwaku Akpalu, Yared Zenebe Zewde, Victoria Mutiso, Godwin Inalegwu Ogbole, Thierry Adoukonou, Njideka Ulunma Okubadejo, Paul Nwani, Ernest Okwundu Nwazor, Anthony J. Griswold, Olufemi Oluwole Olowookere, Taofeek Adedayo Sanni, Allison Caban‐Holt, Rajesh N. Kalaria, Daniel Eje Ukpabi, Tolulope Afolaranmi, Abdullateef Sule, Osi Adeleye, Godspower Chibuke Onunka, Innocent Mwombeki, Tsimona Dinku, Obo Y. Onibon, Hypolite O. Ezin, Oyedolapo Oyedola, Margaret Pericak‐Vance, Fred Sarfo, Albertino Damasceno, Lwere Kamada, Joy Louise Gumikiriza Onoria, Michael Cucarro, Mubashir Uthman, Kelvin Okorie, Yembe Njamnshi
article en

Abstract

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.

Alzheimer s & Dementia Behavior & Socioeconomics of AgingVol. 2(4)
University of Port Harcourt (NG), Ahmadu Bello University (NG), University of Nairobi (KE), Université de Yaoundé I (CM), University of Ilorin (NG), University of Ghana (GH), Medical University of South Carolina (US), University of Jos (NG), The University of Texas at San Antonio Health Science Center (US), Eduardo Mondlane University (MZ), University of Ibadan (NG), Benue State University (NG), University of Lagos (NG), Nnamdi Azikiwe University (NG), North Tyneside General Hospital (GB), Komfo Anokye Teaching Hospital (GH), Federal Neuro Psychiatric Hospital (NG), University College Hospital, Ibadan (NG), Korle Bu Teaching Hospital (GH), Kwame Nkrumah University of Science and Technology (GH), The University of Dodoma (TZ), Afe Babalola University (NG), University of Kinshasa (CD), Université de Parakou (BJ), Federal Medical Centre (NG), Université Catholique du Congo (CD), Université d'Abomey-Calavi (BJ), Ahmadu Bello University Teaching Hospital (NG), Dr. John T. Macdonald Foundation (US), Federal Medical Centre (NG), Africa Mental Health Foundation (KE), Nnamdi Azikiwe University Teaching Hospital (NG), Jos University Teaching Hospital (NG), University of Ilorin Teaching Hospital (NG), University of Nigeria Teaching Hospital (NG), Mirembe National Mental Health Hospital (TZ), Addis Ababa University (ET), Wake Forest University (US), Makerere University (UG), Newcastle University (GB), Olabisi Onabanjo University (NG), Rivers State University (NG)
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Dementia and Cognitive Impairment Research
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