Understanding Break Needs, Break Experiences and Break Outcomes over the Care-giving Career: A Narrative Approach

Abstract

Abstract UK social care policy recognises the importance of short breaks for sustaining care-giving relationships; however, there is limited understanding of how unpaid carers’ break needs evolve in response to the degenerative course of dementia and how these are supported. Using narrative analysis, the stories of thirteen spousal carers for people living with dementia were used to construct an experiential description of the care-giving career, in which spousal carers evolving break needs, experience of accessing breaks and desired break outcomes were explored. The care-giving career was marked by the continual adaptation and acceptance of acute and gradual changes to the care-giving relationship which influenced breaks needs. Irrespective of when in the care-giving career, the process of deciding upon a meaningful break was relational and emotive, emphasising the relevance of relational support to aid transitions to breaks of mutual value. With the deepening cognitive impairment of the person living with dementia, spousal carers encountered difficulties in achieving breaks due to relational and service factors. The conceptualisation of care-giving as a series of shifting configurations underlines the necessity for ongoing and skilful practitioner engagement to help unpaid carers consider ‘what matters’ to them, and proactively respond to changes in ‘what matters’.