Landscapes of care for dementia in rural South Africa

Abstract

How does place shape informal caregiving for and by ageing people with cognitive impairment in rural South Africa? Drawing on the care ecology framework, relational conceptualisations of “landscapes,” and ethnographic research, we illustrate the complexity of informal caregiving for people living with dementia through a case study of 59-year-old Nonisa, who often became confused and forgetful and would sometimes become lost. In Nonisa's rural village, community members drew on historically produced and embodied knowledge and emotions to intervene in beneficial ways, preventing Nonisa wandering far afield, helping to search for her, and/or finding her and returning her home if she became disoriented or lost. When Nonisa disappeared in a major city, she was found by the police, but identifying her via social media and getting her home relied on an informal network of rural community members who knew Nonisa. Faced with an increasing need for someone to consistently watch over Nonisa and ensure her safety, her family unsuccessfully sought access to a government grant to pay a caregiver. We discuss Nonisa's rural village as a diffusely-bounded, networked landscape of care. We highlight how, in addition to physical paths and emotional bonds, cognitive ties and embodied knowledge between people in the caringscape (informal care system) connected locations at different scales and facilitated caregiving, in beneficial ways. Conversely, passive neglect in the formal care system had detrimental effects. We discuss the implications of this for ageing in place in resource-constrained rural communities.