Family and community care for older persons with Parkinson’s disease in Kenya: a qualitative, ethnographic study

Abstract Background Informal family care remains central to care for older adults in Kenya, yet evidence hints towards an ‘erosion’ of large, multi-generational family care networks and a conditionality on reciprocity across many African countries. The increasing incidence and prevalence of chronic conditions associated with later life have made care needs more complex and resource intensive. Parkinson’s is one such example of a progressive condition characterised by a host of motor and non-motor symptoms, which results in increasing disability over time and, therefore, care requirements and resources. The experience of older persons experiencing progressive disability, and the impact on family care, is under-reported in Kenya and across Africa. Methods This paper reports an ethnographic study on the lived experiences of older persons with Parkinson’s (aged 60 and older) and their families living in urban and rural Kenya, drawing on interview material and observations involving 45 people with Parkinson’s and 23 family caregivers to explore the experiences of receiving and providing care. Results The paper explores care provision and receipt in the context of ageing with Parkinson’s as a progressive movement disorder, demonstrating the resilience and adaptability of older adults and their caregivers. Structural, cultural and community processes situate the individual experiences of PwP and family caregivers, who navigate taboos and tensions in reciprocity and resources to make care work. These experiences have implications for who takes on the caring role, and the resulting adaptations, reconfigurations and emerging forms of care that families enact, including unconventional co-residence. Conclusions Older people with Parkinson’s described contending with the progressive nature of Parkinson’s and the erosion of independence, while informal caregivers reported the physical, emotional and financial burden of caregiving. Care work was becoming more difficult, yet families in this study demonstrated adaptability, resilience and enduring obligation to enact and reciprocate care. This study emphasises the need to strengthen, support and sustain community-based approaches to care for older people in Kenya, and elsewhere in Africa. This need is particularly acute as the population rapidly grows and ages, and more older people age with, and into, disability.