A study of faith community support and caregivers for persons living with dementia.

Abstract

Caregivers of persons living with dementia (PLWD) currently total more than 16 million (Alzheimer’s Association, 2020) and with the increasing prevalence of dementia this number will only continue to grow. Many caregivers express a desire for support from professionals and their community after the person they care for receives a diagnosis of dementia, yet many continue to experience difficulty navigating systems and their new role due to a lack of support (National Alliance for Caregiving & American Association of Retired Persons, 2020; Whitlach & Orsulic-Jeras, 2018). Faith communities are often a central source of social service support, guidance, and education (Pinson et al., 2010). Exploring caregivers’ experiences with faith communities is critical to understanding their role and impact on burden. Given the dire outcomes of high levels of burden without apt support, additional research is needed to continue to explore this phenomenon and identify ways to decrease burden for caregivers of persons living with dementia. This dissertation seeks to take steps toward these goals through the provision of a conceptual and prescriptive framework for the transforming faith communities into inclusive and supportive places of refuge for those impacted by dementia, exploration of current barriers and opportunities for social support in faith communities, and finally, by investigating caregivers’ perceptions of religious social support by faith communities and how this may influence burden. The theoretical frameworks of ecological system theory and person-centered care were utilized to guide the conceptualization and design of each of these studies. This dissertation is concluded by chapter five with a summary of each study and implications for social work practice and research.