Spouse caregivers of people with advanced dementia in nursing homes: A longitudinal narrative study

Background: Dementia is a life limiting illness and is becoming a major cause of death in developed countries. Many people with dementia die in nursing homes or long-term residential care settings. Spouse caregivers of people with dementia living in nursing homes find themselves in a position which is difficult to understand and live with. Aim: To explore the caregiving experiences of spouse carers of people with advanced dementia living in nursing homes. Design: Longitudinal narrative study using three sequential interviews and diary accounts. Setting/participants: Spouse caregivers of people with dementia nearing the end of life were recruited from two nursing homes in Northern England. Results: Twenty-seven interviews were conducted and seven diaries collected from 10 spouse caregivers (7 women and 3 men). We demonstrate that for this group the experience of caregiving is one of struggle to live in two worlds', the world of the nursing home and the world of wider society, where, in both settings, their role is often ambiguous and their position liminal. We also identify that feelings of guilt associated with nursing home placement of a spouse with dementia endure far beyond the time of the move. Conclusions: Nursing home staff need to acknowledge spouse carers in their own right, inviting them to tell their stories. We recommend that communication skills be included in educational programmes for nursing home staff. Further research is needed to determine the shape and context of carer needs assessment and support, as recommended in health policy.