Couples' Experiences Managing Young-Onset Dementia Early in the COVID-19 Pandemic

Abstract

Background and Objectives: The coronavirus disease 2019 (COVID-19) pandemic created unexpected stressors for society and could disproportionately affect more vulnerable groups. One such group is couples facing young-onset dementias (YOD), who experience pandemic-induced stressors alongside ongoing YOD-related stressors (e.g., progressive symptoms, increased caregiving needs). Using a qualitative design, our objective was to characterize the experiences of couples living with YOD early in the COVID-19 pandemic and the impact on couples' 'relationships' and well-being. Research Design and Methods: Couples (N = 23) of persons with YOD and their spousal caregivers participated in a 1 hour live video, joint interview during the early COVID-19 pandemic. We used a hybrid inductive-deductive coding approach to thematic analysis to extract findings within 2 a priori domains: (a) psychosocial stressors experienced during the early pandemic and (2) the impact of early pandemic stressors on couples' relationships and well-being. Results: Thematic analyses revealed 6 main themes: (a) increased caregiving responsibilities, (b) increased uncertainty, (c) increased social isolation and disruptions in social support and medical care, (d) loss of meaningful activities and routines, (e) changes to the couple's relationship, and (f) heightened emotional distress. Discussion and Implications: The COVID-19 pandemic exacerbated relationship strain and distress among couples managing YOD. This population may face negative outcomes due to the dual impact of YOD- and pandemic-related stressors. It is imperative to provide timely resources and psychosocial support to couples facing YOD to mitigate the negative impact of such stressors on individual health and well-being and the couples' relationship together.