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Kaya: The Complexity Of Informal Caregiving For Alzheimer's Disease And Related Dementias In Rural South Africa.
Growing numbers of people are developing Alzheimer's disease or related dementias (ADRD) in resource-limited settings with little formal caregiving support. The consequent care needs can be complicated, affecting households and beyond. However, research on the impact of ADRD caregiving is largely limited to primary caregivers and high-income countries. The Kaya project aims to understand how extended households negotiate and provide care to people with ADRD and how the health and wellbeing of all caregivers are affected by care roles, in settings where formal care options are absent.
Building on existing studies of aging and dementia, the Kaya study will be conducted with 100 households in which an older adult has confirmed cognitive decline or ADRD at the Agincourt research site in rural Mpumalanga, South Africa. All household members and others providing dementia-related care will be interviewed using quantitative questionnaires, and the team will conduct qualitative observation of household activities and in-depth interviews. We will also analyze community constraints and support systems using key informant interviews.
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 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.