Exploring the role of occupation for spouse-carers before and after the death of a spouse with dementia

Abstract

Introduction

When a person with dementia dies, their former spouse-carer can find their personal resources so depleted that re-engaging in life can be difficult, leaving their mental health vulnerable. This qualitative study aimed to explore whether the occupations of spouse-carers contribute in the transition to the post-care period.

Method

Purposive sampling was used to recruit nine spouse-carers, who were between 1 and 5 years post-bereavement, via two branches of the Alzheimer’s Society, in the United Kingdom. In-depth interviews collected data for this interpretative phenomenological study, which were subject to template analysis.

Findings

Exploration of the data produced themes of continuity, roles and occupations, support and change and transition. Many of the findings supported published literature. However, a new finding emerged, where spouse-carers’ engagement in a ‘sustaining occupation’ (researcher’s term) appeared to counter the effect of role overload.

Conclusion

Four key ways that occupations of spouse-carers contributed to the transition to post-care were identified: ‘sustaining occupations’; occupations that maintain spouse-carers’ identity; continuing bonds with the deceased care-recipient; developing new roles. The first two of these began before bereavement and assisted in equipping spouse-carers for the transition to post-care. The second two followed bereavement and enabled spouse-carers to build confidence and re-engage with life.