Changes in the couple relationship in dementia care

Abstract

Spouse carers of people with dementia face unique challenges as they adapt to the demands of caring whilst experiencing significant losses in their couple relationship. The ‘professionalization’ of carers by services has been criticized, and recent UK government guidance proposes that carers receive an assessment of psychological need. This study explored spouse carers’ experiences. Semi-structured interviews were conducted with seven spouses, recruited though local Alzheimer’s Societies, who were caring for their partners with mid-stage dementia at home. The data were analysed using interpretative phenomenological analysis. Four overarching themes emerged: ‘connectedness and separateness’; ‘tension between meeting own needs and meeting needs of spouse’; ‘knowing and not knowing the future’; and ‘seeking control — emotional and practical strategies’. With the progressive decline in their partners’ functioning, spouse carers experienced an ongoing process of re-evaluation and re-positioning of themselves in relation to their partner and their couple relationship. Implications for services highlight the importance of support groups and psychological support.