Using Technology to Enhance the Well-Being of Caregivers of Persons with Dementia: Implications for Social Work Practice and Policy

Abstract

Difficulties caring for people living with dementia (PWD) contribute to their family caregivers’ diverse unmet needs and adverse outcomes in health and well-being. This dissertation research explored the influence of macro systems on individual caregivers' well-being reflecting on the prevalence of online use among caregivers. Caregivers have migrated to online platforms to seek support. However, there is limited understanding of how online social support [OnSS] compares to offline support [OffSS] in terms of caregivers’ well-being. The first study examined the associations of OnSS and OffSS with the psychological well-being [MH] of caregivers. A subsample of the Health Information National Trends Survey (HINTS) from 2017 to 2018 (n=264) was analyzed. The data indicate that OnSS supplemented rather than replaced OffSS. Emotional support delivered offline had a positive direct association with MH, while OnSS did not. OffSS interacted with caregiving stressors while OnSS interacted with life stressors. Caregivers who are in less favorable situations, such as working part-time while caring for a PWD, living with economic hardship, and being unhealthy, tended to be significantly affected by OnSS. The results suggest that practitioners need to incorporate caregivers’ OffSS into OnSS to maximize the available support resources, specifically for those who are in less favorable conditions. There is limited understanding of caregivers’ experiences within the complex health care system, especially after the significant policy changes brought about by the Affordable Care Act (ACA). The second study analyzed caregivers’ perceptions of and experiences with the ACA using national online forum data posted in 2011-2017 (n=514 posts). Text-mining thematic analysis method was used to analyze the posts. Three overall themes emerged: (a) concern about cost implications of placement decisions for care recipients, (b) skepticism about government and healthcare system support of their caregiving roles, and (c) caregivers’ own well-being and concerns about health insurance. Efforts are needed to enhance clear and effective communication among policymakers and health professionals serving service users, including caregivers of PWD. The present dissertation provides preliminary evidence to increase understanding of the complex contexts that affect the overall well-being of caregivers. Implications and suggestions for practitioners, policymakers, and researchers are discussed.