The Effects of COVID-19 Stress on the Quality of Life and Well-Being of Informal Caregivers of Persons with Dementia

Abstract

Objective. The main objective of this study was to measure the extent of the relationship between COVID-19 Stress (CS) and both Quality of Life (QOL) and Well-Being (WB) in informal caregivers (ICs) of persons with dementia (PWD). The current gap in literature suggests that little is known about the IC experience throughout the novel and evolving COVID-19 pandemic. Methods. Participants were recruited both online Canada-wide and via the Bruyère Research Institute (BRI) between December 2021 and April 2022. The study employed a mixed-method approach and captured quantitative data via a self-report online survey using validated scales to measure COVID Stress (CSS), Dementia Caregiver QOL (C-DEMQOL), Carer Burden (ZBI-22), and Role Captivity. Qualitative data was collected via four open-ended questions which concluded the survey, to gather further information on the experiences of ICs throughout the pandemic. The statistical analysis employed for this study was Pearson’s r for correlation. Thematic analysis was employed to interpret qualitative data. Results. No significant results were found between CS and both QOL and WB, though significant associations were found between specific scale and subscale measures for QOL and WB. Thematic analysis revealed three main themes within the qualitative data: (1) increased burden on caregivers, (2) diminished quality of care for care recipients, and (3) lack of support and consideration by policy makers for caregivers. The impact that the findings of this study can have are substantial, as it will begin the process of documenting the impact of the novel COVID-19 pandemic on ICs of PWD and, more specifically, within the Canadian demographic. This will be able to address the current gap in literature and more tentatively, provide data to advocate for informed policy making.