Caring for a dying spouse at the end of life:“It’s one of the things you volunteer for when you get married”: a qualitative study of the oldest carers’ experiences

Background: Older people aged 80 and over are increasingly providing end of life care to spouses at home, and often do so for long periods of time, whilst also trying to manage their own illnesses and disabilities. Little of the research on older spousal carers has focussed on the oldest carers, hence the needs of this particular population are not fully known. Objective: To explore the experiences of the ‘oldest carers’ in caring for a dying spouse at home. Methods: Secondary analysis was undertaken on a subset of data from a larger qualitative interview study; this dataset comprised 17 interviews from participants aged 80 or over. Framework analysis methods were used, with items derived from the thematic analysis of the main study. Results: The oldest carers in this subset demonstrated high levels of resilience, and the ability to adapt to their caring role. Caring until death was accepted as an integral part of the commitment made to their partner as part of the ‘wedding contract’. Carers felt they benefitted from the support provided by family, friends and care services; however their own care needs were not always recognised by health and social care services. Conclusions: These findings underscore the complexity of the oldest carers’ experiences and challenges in times of illness and end of life. Healthcare professionals should be alerted to the myriad ways caregiving is enacted in serious illness and seek opportunities for developing supportive interventions specifically for older carers