THE SOCIAL EXPERIENCES OF SPOUSES OF PERSONS WITH YOUNG-ONSET DEMENTIA

Abstract

<p>Spousal caregivers of persons with young-onset dementia (YOD) are known to experience significant social impacts, including family conflict, social avoidance, and marginalization. However, no qualitative study has examined the social experiences of YOD spousal caregivers within the Canadian context. This thesis examined the described social experiences of these caregivers. A descriptive, qualitative approach was used to study the nature of these social experiences using in-depth, semi-structured interviews. Ten YOD spousal caregivers living in Ontario completed the study. Four themes emerged from the analysis: sources of social support, giving up activities in favour of new activities, adapting and maintaining in social and recreational activities, and social spaces as safe spaces. Concepts of caregiver social adaptation, and choosing to give up social and recreational activities in favour of new ones builds upon existing research on theories of social support, activity restriction, caregiver adaptation, and avoidance previously described in the existing dementia literature. Themes of giving up activities in favour of new activities, and social spaces as safe spaces also represent new themes not previously discussed in the dementia caregiving literature. Previous, socially-relevant research on YOD spousal caregiving has focused primarily on examining social impacts, with little attention paid to caregiver perceptions of their social experiences in the Canadian context. These findings indicate that caregiving for a spouse with YOD entails complex social experiences, which extend beyond value-laden depictions of social outcomes recorded in the existing literature. These rich experiences challenge and expand our theoretical understanding of spousal caregiving for persons with YOD.</p>