Life experience and identity of spousal caregivers of people with dementia: A qualitative systematic review

Background The number of people with dementia is on the rise worldwide, and dementia care has become the focus of global health services. People with dementia are primarily cared for by informal caregivers, with spouses seen as a particularly vulnerable group. Focusing on the spousal caregiving experience and having a good caregiver identity contributes to group bonding and enhanced social support. Objective To explore the dynamic changes that occur in the caregiving experience of spouse caregivers and explicate the identity of spouses during this process alongside its causes. Design A qualitative systematic review. Data source The following eight electronic databases were searched: PubMed, Web of Science (Core Collection), The Cochrane Library, Embase, CINAHL and CNKI, WanFang and Vip. Review methods The Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) and Joanna Briggs Institute Reviewer's Manual criteria were used to report the results. Study screening and data extraction were conducted independently by two reviewers, and quality was assessed using the Joanna Briggs Institute's Qualitative Research Standard Assessment tool. Data synthesis was performed using thematic analysis. Results A total of 15 studies were included and synthesized into three analytical themes: (1) attitudes and emotions towards dementia, (2) emotional ups and downs in dementia care, and (3) who am “I”. In binary care, patience and marital responsibilities are identified as facilitators, while care burden and social isolation are identified as hindrances. In addition, gender differences were identified as influencers of identity. Conclusions In this review, spouse identity of people with dementia is complex and affects caregiving experience together with dementia cognition. Disease cognition, caregiving burden and social isolation are identified. Interventions for barriers are suggested to enhance social support.