Family Caregivers of Veterans Experience Clinically Significant Levels of Distress Prepandemic and During Pandemic

Abstract

Background: Of the 26.4 million family caregivers in the United States, nearly 40% report high levels of emotional strain and subjective burden. However, for the 5 million caregivers of Veterans, little is known about the experiences of caregivers of Veterans during the coronavirus disease 2019 (COVID-19) pandemic. Objective: The aim was to examine pandemic-related changes of caregiver well-being outcomes. Research Design, Subjects, and Measures: Using a pre/post design and longitudinal data of individual caregivers captured pre-COVID-19 and during COVID-19, we use multilevel generalized linear mixed models to examine pandemic-related changes to caregiver well-being (n=903). The primary outcome measures include Zarit Subjective Burden, Center for Epidemiologic Studies Short Depression Scale, perceived financial strain, life chaos, and loneliness. Results: During the pandemic, we observe slight improvements for caregivers across well-being measures except for perceived financial strain. Before the pandemic, we observed that caregivers screened positive for clinically significant caregiver burden and probable depression. While we do not observe worsening indicators of caregiver well-being during the COVID-19 pandemic, the average predicted values of indicators of caregiver well-being remain clinically significant for caregiving subjective burden and depression. Conclusions: These findings illuminate pandemic-related impacts of caregivers receiving support through the Veterans Affairs (VA) pre-COVID and during the COVID-19 pandemic while caring for a population of frail, older care-recipients with a high burden of mental illness and other chronic conditions. Considering the long-term impacts of the pandemic to increase morbidity and the expected increased demand for caregivers in an aging population, these consistently high levels of distress despite receiving support highlight the need for interventions and policy reform to systematically support caregivers more broadly.

“I’ve been doing this for years”: the COVID-19 pandemic and family caregiver isolation and loneliness

“…Additionally, some caregivers who felt more hopeful during the pandemic had higher wellbeing (Onwumere et al, 2021). Many of these early studies are limited to comparing caregivers to noncaregivers or using cross-sectional quantitative data during the pandemic only, and were prone to recall bias with methods that relied on caregivers self-reporting perceived changes in wellbeing several months into the COVID-19 pandemic compared to the months before the pandemic (Miller et al, 2022).…”

“…All of these services remained operational during the COVID-19 pandemic with pivots to virtual or phone-based delivery of supports and services. One study of family caregivers of veterans using a pre/post design and longitudinal data showed improved caregiver loneliness and wellbeing compared to before the COVID-19 pandemic; however, while improved, those domains were high before the pandemic and remained so during the pandemic (Miller et al, 2022). While these caregivers continued to experience negative pandemic-related wellbeing effects (Miller et al, 2022), it could be possible that the wellbeing improvements observed were due to VA caregiver services remaining active during the pandemic.…”