2024 Health Disparities, Policy and Ethics in Alzheimer’s Disease and Dementia Research (HPE-ADRD)

FUNDISA: Framework for Understanding Neurocognitive Disorders via Indigenous Systems in South Africa

How can knowledge of Down syndrome and Alzheimer’s disease be improved in rural South Africa?

Eimear McGlinchey, Ph.D.
Trinity College
Dublin, Ireland

Background

Individuals with Down syndrome are at a high risk for developing Alzheimer’s disease and related dementia (ADRD). By the early age of 40, most people with Down syndrome have a build-up of beta-amyloid plaques and tau protein tangles in their brains, both hallmark brain changes observed in Alzheimer’s. Studies show that individuals with Down syndrome and Alzheimer’s show similar changes in brain regions important for learning, memory and attention. 

Awareness of the links between ADRD and Down syndrome is growing in high income counties. However, scientists know relatively little about how people in low and middle income countries regard these disorders. Such lack of knowledge is problematic, as studies report that nearly two-thirds of individuals with ADRD live in less affluent nations. Moreover, many of these individuals live in rural areas with little health care options.  

Research Plan

Dr. Eimear McGlinchey and colleagues will devote their research grant to understanding and improving awareness of Down syndrome and Alzheimer’s in rural South Africa. South Africa is a middle income country in which the prevalence of dementia is growing. For this effort, the researchers will recruit and work with local medical doctors (MDs), as well as local healers called traditional healing practitioners (THPs). Studies indicate that as much as 80% of rural South Africans use THPs, especially in areas where professional medical care is lacking. 

For the first part of their project, the researchers will work with a group of about 15 MDs and THPs to begin developing a novel framework for communicating knowledge of Down syndrome and ADRD in rural communities. This framework, called FUNDISA (Framework for Understanding Neurocognitive Disorders via Indigenous Systems in South Africa), will involve devising culturally appropriate ways of describing Down syndrome and ADRD. Second, Dr. McGlinchey’s team will interview a larger group of rural MDs and THPs to assess their knowledge of Alzheimer’s and Down syndrome. They will also identify the kinds of cultural attitudes that local communities hold about these disorders. Lastly, using results gained from their interviews, the investigators will further refine their FUNDISA tool.   

Impact

Results from Dr. McGlinchey’s project could identify a novel tool for spreading knowledge of dementia and Down syndrome in underserved regions. This tool – which could also be tailored for communities in other nations – may lead to better diagnosis, treatment and care practices worldwide.