PROJECT SUMMARY
As growing numbers of people age globally, many develop Alzheimer's disease or related dementias
(ADRD) as well as physical health problems. The consequent care needs can be complicated, affecting
households and beyond, particularly in resource-constrained communities where formal care services are
lacking. However, research on the impact of ADRD caregiving is largely limited to primary caregivers and
high-income countries. Our long-term goal is to identify ways to mitigate the negative impacts of long-term
caregiving for ADRD in such communities, so to develop novel ways to support householders and other
caregivers. Our objectives in this study are to analyze: (1) how extended households negotiate and provide
care to people with ADRD; and (2) how the health and wellbeing of all caregivers are affected by care roles.
The study will take place at the established Agincourt health and socio-demographic surveillance system
(HDSS) in Mpumalanga, South Africa, which has successful long-term relationships with the local
population. Rural South Africa is ideal for examining ADRD caregiving since dementia prevalence is rising,
understanding of dementia is limited, formal care is limited, and household structures and social networks
are diverse and in flux due to poverty, rapid social change, circular migration and comorbid conditions – all
allowing careful examination of constellations of care. Drawing from the Health and Aging in Africa
(HAALSI) cohort nested within the HDSS, we will recruit 100 index participants who have been clinically
screened for dementia and confirmed to have cognitive impairment or ADRD. Conducting this research
within an established HDSS research platform, in association with clinical and social epidemiological
research on dementia, will maximize our likely impact. We will combine data from qualitative observation of
household activities and in-depth interviews with quantitative surveys to determine patterns of care and
health among residents, non-resident kin and non-kin. We will also analyze community constraints and
support systems using key informant interviews. We will describe how decisions about caregiving roles,
and their physical, mental, social and financial impacts, are influenced by such factors as: (a) the
frequency, intensity and difficulty of care; (b) household composition, including changes due to circular
migration and mortality; (c) household economic wellbeing and stress; and (d) external informal and formal
sources of care support, including households' extended social networks. Combining epidemiological,
demographic and anthropological methods, we will build a rich picture of caregiving demands, capacity and
outcomes in households of people with ADRD, and effects on caregivers as social networks change in
response. We expect our findings to inform future longitudinal research on how ADRD caregiving affects
households and communities, so to develop community-oriented interpersonal and structural interventions
to improve the health of caregivers and recipients. The research will generate novel data on informal and
formal caregiving, relevant to other resource-poor settings in both poorer and richer countries.