Caregiving for people with dementia in a rural context in South Africa

Background: This research is an exploratory pilot study into the phenomenon of caregiving for people with dementia in a rural context in South Africa. Method: This study used a qualitative method of inquiry for conducting individual interviews with five caregivers to collect the data. The interviews were conducted in the local language of isiZulu. All interviews were audiotaped, and then transcribed into English. Transcriptions were analysed using thematic analysis. Findings: There were three main emergent themes, namely views and responsibilities of the caregiver, impact of caregiving, and skills and services to assist the caregiver. There were numerous subsidiary themes such as acceptance of the ageing process, a sense of duty and kinship in African culture, and dealing with problem behaviours. Caregiving was also viewed as a character-building experience, and has major implications such as promoting social isolation, restricting activities of daily living, reducing employment and increasing financial burden. Services that would alleviate caregiver burden are education, caregiver training, a financial grant and respite care. Conclusions: Although these findings are not generalisable, it would appear that caregivers of people with dementia suffer significant psychosocial distress, and would benefit from emotional and financial support. It remains to be seen who will provide this support, but policy-makers as well as governmental and non-governmental organisations will have to factor this into their forward planning to render an effective service for people with dementia and their families. Advocacy groups should also disseminate information on dementia and caregiving responsibility, whilst healthcare professionals should screen for caregiver stress or caregiver burden in individuals caring for people with dementia.