‘It is stressful, almost every hour…’: Experiences of caring for people living with dementia in Kenya—An interpretive phenomenological approach

Abstract

Introduction As chronic conditions such as dementia become increasingly prevalent, the role of caregivers will become ever more critical. In the East African region, little is known about the experiences of caring for people living with dementia. This study aims to describe the views of being a caregiver, including day-to-day responsibilities and duties, determine the impact of caregiving and understand participants’ experiences of supports available or required to facilitate caring for a person living with dementia in Kenya. Methods This was a qualitative study that employed an interpretative phenomenological analysis (IPA) approach. We used convenience sampling to identify study participants in three counties in Kenya. Participants were main caregivers for the family and hence included both families and paid caregivers. We recruited 10 caregivers to participate in the study (9 females and 1 male). Data were analysed manually following the IPA approach. Results Three main themes emerged from the analysis: the personal experience of caregiving, supports to assist with caregiving and the perceived unmet care needs. The challenges experienced varied based on the support available to the caregiver, the number of years in the caregiving role and knowledge and skills related to providing care. Conclusion Our study shows that caring for a person living with dementia is an arduous experience, requiring significant mental and physical effort. The study highlights a general lack of knowledge and awareness of dementia among families, healthcare professionals and the general public. Training programmes for caregivers, including dementia care skills, educating healthcare practitioners and organising public awareness programmes to understand and accept dementia are urgently needed.