Relationships of Spouse Caregivers of Individuals with Early-onset Dementia Who Participate in Self-help Groups

Abstract

Objective: In the present study, we aimed to document how spouse caregivers of individuals with early-onset dementia who participate in self-help groups interpret their relationships.

Method: Eight spouse caregivers of individuals with early-onset dementia, enrolled in self-help support groups, participated in this qualitative study. All subjects completed interviews consisting of open-ended questions about relationships.

Results: The analysis revealed two categories as a premise, and six categories as relationships. Although the lives of spouse caregivers were completely altered as a result of caring for their partners with early-onset dementia, the caregivers reported the reconstruction of their life to maintain the pre-dementia lives of their loved ones. This was the premise of the caregivers’ relationships. Spouse caregivers could express their honest feelings about caregiving with the other members of the self-help support groups. Moreover, they reported experiencing stronger relationships, enjoying themselves with time and space away from their loved ones, and developing social relationships through their new spouse caregiver roles and missions. Furthermore, they were conscious of fulfilling social roles that exist in relationships outside that of the spouse caregiver.

Discussion: For spouse caregivers of individuals with early-onset dementia, relationships with fellow self-help group members were important. Spouse caregivers valued the approval and sympathy they received from other caregivers. Moreover, forming social roles both within and outside of the caregiver’s role was a way of feeling appreciated in the society.