Nested case control study of prevalence and aetiology of dementia in a rural Ugandan population, and a situational analysis of services available for affected families: a protocol. Part of the DEPEND Uganda study (Dementia EPidemiology, unmet Need and co-Developing Solutions)

Background: The prevalence of dementia in low- and middle-income countries is increasing, yet epidemiological data from African populations remain scarce. Crucial risk factors differ in Africa from more intensively studied global areas, including a high burden of cerebrovascular disease and HIV, but lower rates of other risk factors like physical inactivity. Understanding dementia aetiology in African settings has been limited by the expensive and invasive nature of biomarker testing. This study leverages developments in blood-based and retinal imaging biomarker technology to examine the drivers of dementia in older Ugandans. People with dementia have complex needs benefiting from multi-dimensional support. Understanding current services will allow identification of barriers and opportunities to strengthen support available to people with dementia and their families. Methods: The study is nested within the existing General Population Cohort run by the MRC/UVRI & LSHTM Research Unit. Currently, all adults aged 60+ (around 1400) are undergoing brief cognitive screening. In Part 1, cohort participants will be selected based on cognitive screening scores to undergo detailed cognitive assessment, using methods developed by the 10/66 Dementia Research Group. Part 2 is a case control study of people with and without dementia using antecedent data, questionnaires, physical assessment, retinal imaging, and Alzheimer’s blood-based biomarkers. We will also compare disability, frailty, quality of life, and social engagement in people with and without dementia. Part 3 assesses current provision of formal support for people with dementia through review of publicly available literature and expert interviews. Conclusions: This is the first study in Africa using blood-based and retinal imaging biomarkers to examine the pathological processes underlying dementia, and it will systematically map services available for people with dementia. This paves the way for effective policy strategies for both dementia prevention and support for people with dementia and their families.