Family Caregivers of Veterans Experience Clinically Significant Levels of Distress Prepandemic and During Pandemic: Implications for Caregiver Support Services

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.

Figure 1.

Model Estimated Mean Outcome Values with 95% Confidence Intervals Notes: A higher score indicates a worse outcome, e.g., greater depressive symptoms. As not all respondents had a score for each outcome (e.g., declining to answer enough questions of the instrument to generate a valid score), the number of observations retained in each regression varied. The total number of observations was 1,372 (n=882 unique caregivers) for the Zarit Subjective Burden; 1,405 (n=894 unique caregivers) for the CESD-10 Score; 1,396 (n=892 unique caregivers) for the Perceived Financial Strain; 1,399 (n=891 unique caregivers) for Life Chaos; and 1,386 (n=855 unique caregivers) for the Loneliness score. Clinically significant thresholds are greater than or equal to 16 for Zarit burden and greater than or equal to 8 or 10 for CESD-10. Notably, the scale for the Zarit burden is already greater than the clinical thresholds of 16 and CESD-10 scores for all time-points are greater than the clinical threshold of 10.