Caring for Dementia Caregivers: Understanding Caregiver Stress During the COVID-19 Pandemic

Abstract

More than 16 million Americans provide unpaid care for someone with Alzheimer's disease and related dementias (ADRD). During the COVID-19 pandemic, unpaid caregivers experienced increased chronic severe stress from widespread closures and social distancing. We conducted eight surveys from March 2020 to March 2021 among a cohort of over 10,000 individuals. Cross-sectional analysis was conducted to investigate frequency and ratios of groups reporting increased stress across surveys. A longitudinal analysis was also performed with the 1,030 participants who took more than one survey. We found a growing crisis among dementia caregivers: By Survey 8, current caregivers reported 2.9 times higher stress levels than the comparator group. By that time, 64% of current caregivers reported having multiple stress symptoms typically found in people experiencing severe stress. Both analyses reported increased levels of stressors over time that were more associated with certain caregiver groups. Our findings underscore the urgent need for public policy initiatives and supportive community infrastructure to support ADRD caregivers.

Keywords: ADRD; Alzheimer’s; COVID-19; dementia caregiver; severe stress.

Figure 1.

Stress symptoms in Surveys 3 to 8.

Figure 2.

Assessment of contributing factors to the total chi-square score using Pearson residuals. Blue circles denote positive association; red circles denote negative association. Circle size represents magnitude of effect.

Figure 3.

Counts of total symptoms for participants completing all surveys.

Figure 4.

Model of stress-related symptoms over time.

Figure 5.

Model estimating testing for the association between total stressors over time and covariates of interest.