Caregiving spouses’ experiences of relational uncertainty and partner influence in the prolonged relational transition of Alzheimer’s disease and related dementias

Abstract

Alzheimer’s disease and related dementias cause gradual cognitive and communicative decline over a period of several years creating a prolonged transitional period in the lives of people with the disease and their spouse. Relational turbulence theory served as a lens to examine 18 in-depth interviews with caregiving spouses regarding their experiences of relational uncertainty, and interference and facilitation from their partner throughout this prolonged relational transition. Counterintuitively, the experience of relational uncertainty was greatly influenced by the certainties of relational change and termination (death) that shifted the temporal focus of uncertainty to the future. Communicative symptoms and aggressive behavior were a main source of interference. Despite the impairment of the disease, caregiving spouses recognized their partners’ expressions of gratitude, moments of recognition, and simple expressions of love as facilitation.