Challenges of Recruiting Persons with Alzheimer’s Dementia (AD) for Genetic Studies in Selected African Countries on the African Dementia Consortium (AfDC)
Authors: Elugbadebo Olufisayo Oluyinka , Farombi Temitope Hannah , Ogunronbi Mayowa , Umuojine John‐Paul , Zewde Yared Z , Musyimi Christine W. , Boshe Judith , Lwere Kamada , Ndetei David , Akpalu Albert Kwaku , Sarfo Fred Stephen , NJAMNSHI Alfred Kongnyu , Whitehead Patrice L. , Adams Larry D. , Logvinsky Inna , Inciute Jovita D. , Kunkle Brain , Griswold Anthony J. , McCauley Jacob L , Vance Jeffery M. , Pericak‐Vance Margaret A , Arulogun Oyedunni , Baiyewu Olusegun , Ogunniyi Adesola , Akinyemi Rufus O. , Consortum Africa Dementia 
Published: January 2025

Background

Understanding the genetic underpinnings of Alzheimer’s disease is crucial for advancing research and developing targeted interventions. Genomic research in dementia in Africa is of utmost importance based on recent reports from studies in African Americans that African ancestral gene is associated with lower risk effect for developing AD. However, dementia related genetic study is an evolving research in sub‐Saharan Africa with peculiar challenges influencing participant recruitment. This study sought to identify the key challenges of the recruitment process into dementia‐ related genetic studies and how these were mitigated in the READD‐ADSP Africa and Origins of AD in African ancestry genetic studies.

Method

A narrative qualitative research design using in‐depth open‐ended interviews explored the challenges of recruiting participants and how these were managed among the key stakeholders, including, healthcare professionals, and researchers involved in the recruitment process from nine African countries participating in the AfDC. An inductive thematic analysis was applied to systematically code and analyze the data.

Result

Eighteen stakeholders from 7 African country members (Nigeria, Ghana, Kenya, Tanzania, Uganda, Cameroon, and Ethiopia) of the AfDC were interviewed. Similar challenges were observed across most African Countries which includes non‐existing national dementia registry, a common challenge in the recruitment process. Other challenges identified were poorly populated local or hospital‐based dementia registry, language diversity, myths around blood collection, family dynamics, stigma, logistics, unmet expectations concerning incentives, fewer older controls and data privacy. Leveraging on previous research programmes, existing community engagement activities and client‐doctor relationship assisted in addressing these challenges

Conclusion

There are some unique challenges with recruitment of participants into genetic studies in Africa. Educating the populace on the need for genetic studies is key to addressing some of these challenges. Community engagement programs specifically targeted at improving knowledge about dementia are currently being deployed across these countries. Adopting culturally‐sensitive recruitment strategies, strengthening community engagement and advocacy for well populated dementia registry for AfDC could further help address these obstacles and improve recruitment of participants in genetic studies.