The Invisible Frontline: Experiences of Spousal Caregivers During COVID-19.

Abstract

Spousal caregivers are a largely invisible population of unpaid long-term care providers in the United States. This paper examines their experiences during the COVID-19 pandemic by drawing on data from 96 virtual and phone interviews with 44 spousal caregivers cohabitating with an ill partner across 22 states between June and December 2020. Findings show caregivers 1) adjusted care practices related to food and supply deliveries, socializing online, and infection control; 2) experienced impacts on care, including the loss of home health aides and reduced outpatient care; and 3) experienced emotional distress due to isolation, increased care demands, and resulting heightened anxiety and stress. These findings indicate specific types of ongoing resources caregivers may continue to need as the pandemic wanes, such as access to online support, a more robust infrastructure for food delivery, and planning for an increased projected shortage of home health aides.