A Qualitative Study of Non-Caregiving Adult Children's Experiences of a Parent's Alzheimer's Disease

Abstract

Although there is abundant research on the etiology of Alzheimerâ s disease and its impact on primary caregivers, there is relatively little research that examines the consequences of the disease for entire families, and no literature that exclusively studies the experiences of non-caregiving family members. Seeking to explore the experience of non-caregivers, this qualitative study examined how adult children of an Alzheimerâ s patient who were not the caregiver for their parent experienced the onset and progression of the disease. Using the guiding theoretical frameworks of phenomenology, family systems theory, and ambiguous loss, in-depth interviews were conducted with three individuals and were coded for themes. The main themes found included externalization of symptoms, belief in the Alzheimerâ s diagnosis, acceptance, flexibility, sibling and parental relationships, communication, planning, shared family philosophy, family of origin roles, and boundary ambiguity. Implications for clinical practice and suggestions for future research are included.