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.
Increasing numbers of older people in resource-poor settings experience dementia and require informal care in the absence of formal care structures. We will analyze how householders understand what care is needed, how they negotiate and share the provision of care, and how they draw on varied social networks for their own support and assistance. The knowledge we will generate in this rural South African setting is relevant to poor communities with little access to formal care worldwide.
