The role of obligation, willingness and preparedness for caregiving when supporting a relative with dementia

Abstract

Background: Using Knight’s Socio-cognitive model of stress and coping, this study explored caregiver cultural obligations and willingness to care for a relative with dementia and the impact on coping and wellbeing. In addition the impact of caregiver preparedness on managing transitions in care was considered. Method: Eleven south Asian and 10 white British family caregivers of people with dementia participated in in-depth interviews, followed up twice at six-month intervals. Thematic analysis was conducted on data. Findings: South Asian caregivers cited religion as a main source of obligation to provide care whereas white British caregivers discussed community and social pressures. All carers discussed family reciprocity and availability of family as motivators with willingness to care being associated with family and personal context. Preparedness influenced how caregivers coped and whether they were willing to continue providing care. Existing understanding of dementia and sense of preparedness influenced use of coping strategies to manage care transitions. South Asian caregivers particularly found negotiating with health and social support services challenging. Finally caregivers of people with more advanced dementia experienced complex emotions while considering transfer to a care home or providing end of life care. Discussion: The transitions in the caregiver role had an impact on the caregiver’s willingness and sense of preparedness to provide care. These factors played a significant role in the caregiver’s capacity to cope with changes, their willingness and ability to continue providing care, and their wellbeing. The findings suggest the need to develop interventions to improve caregiver preparedness.