Continuity and loss: The carer's journey through dementia

Abstract

This paper looks at the ambiguous journey travelled by family, mainly spouse, carers in Scotland is based on 37 interviews which formed part of a larger study exploring the subjective experience of 20 individuals with dementia. The majority of the interviews were conducted with the carer alone, others with the relative with dementia (RWD) present and some as joint interviews. The carers are found to be recognizing many manifestations of loss in the loved one and, simultaneously in their carer role, striving to maintain continuity of that person through compensatory actions and the provision of a supportive care environment. These experiences are located along a trajectory of continuity and loss. This article provides further insight into the caregiving relationship in dementia and the complexities of maintaining that relationship in the shifting ground of a progressive illness.