Supporting sustainable occupational lives for partner caregivers of people with dementia

Abstract

Introduction This qualitative research explores the experience of partner caregivers and how their partner’s dementia impacts on their daily living and occupational lives, with the aim of informing the sustainability of homecare and decreasing the likelihood of formal care. Method Ten participants were recruited through Alzheimer’s Society groups. They were interviewed using the same semi-structured interview process and asked questions about their daily activities and caregiving role. The data was analysed using Braun and Clarke’s thematic analysis process and themes generated using inductive coding and reasoning. Findings Three main themes were identified: (1) losing occupational activities and roles; (2) adapting to a new occupational life and (3) adjusting to a new relationship in the trajectory of their partner’s illness. Conclusion This study highlights the complex occupational challenges experienced by partner caregivers of people with dementia. It suggests that there is a role for occupational therapists in sustaining homecare by working with partner caregivers as ‘expert service users’. Involvement should be provided at critical points of the caregiving journey and include co-creating technology solutions for social inclusion, sustaining adaptive engagement in personal occupations, creating opportunities for restoration and supporting caregivers to preserve their partner’s personhood.