Alzheimer’s Caregivers’ Experience With and Perceptions of the Affordable Care Act: Thematic Analysis of Online Discussion Forums

Abstract

The objective of this study was to analyze caregivers’ authentic perceptions of and experiences with the Affordable Care Act (ACA). This mixed-methods study identified and analyzed caregivers’ unsolicited posts on a national online forum. Data posted in 2011 to 2017 were collected. The text-mining thematic analysis method was used to code and analyze 514 caregiver posts. Although many caregiver posts about the ACA had a negative tone, perceptions became more positive over time. Three overall themes emerged: (a) concern about cost implications of placement decisions for care recipients, (b) skepticism about government and health care system support of their caregiving roles, and (c) caregivers’ own well-being and concerns about health insurance. Clear and effective communication between policymakers, health professionals, and caregivers is needed to enhance health system literacy. Policymakers, as well as health and social care professionals working with Alzheimer’s patients and their families, should be empowered to develop and support a family-centered service system.