Caring for Caregivers During <scp>COVID</scp> ‐19

Abstract

Older adults are often dependent on informal caregivers who provide home-based assistance with personal care and household tasks, and with complex medical and nursing tasks that are typically performed by trained professionals.1 The COVID-19 pandemic and resulting calls for physical distancing have profoundly changed the way people interact, raising concern about the potential for negative physical and mental health consequences across society. Older adults may be especially impacted due to their higher risk of experiencing severe COVID-19 illness and the potential compounding of other social and structural vulnerabilities.2 These vulnerabilities include the negative impacts of the COVID-19 pandemic on their family caregivers. There are multiple reasons caregivers may experience higher than usual stress and burden during COVID-19. The activities of caregiving may be harder to accomplish. Communication and coordination with healthcare providers may be interrupted by canceled appointments and challenges in reaching providers. Caregivers may be unable to rely on their usual network of formal and informal in-home supports and face escalating challenges in accessing needed in-home care. Additionally, support programs, such as adult day health care, may not be available, hospitalized patients may be discharged home sooner and sicker than before, and post-acute care options may be more limited. Caregivers may also experience negative physical and mental health outcomes. They often have their own COVID-19 exposure risks and concomitant increased concerns about self-care and health, leading to stress when weighing decisions about care recipients' care needs. Many caregivers experience feelings of social isolation, which may be exacerbated by social distancing policy measures. Older caregivers may be at particular risk for injury as they take on additional hands-on caregiving responsibilities, such as assisting with mobility and transfers in the absence of other help. Finally, caregivers may be struggling with income loss, job loss, and lack of dependent care and childcare. Added caregiver burden and lack of informal care may prevent older care recipients from being safely maintained in their homes, increasing the risk of requiring care in emergency departments, hospitals, or long-term care facilities. Caregivers of military veterans seen within the Veterans Health Affairs (VA) system are at especially great risk for strain and in need of caregiver support because 75% of veterans with functional impairment rely on informal care for daily support and disease management.3 Caregiver stress and burnout endanger a critical component of the care ecosystems for these veterans. Hence, this was a critical topic at the Veteran's Family Caregiver and Survivor Advisory Committee Meeting on March 25, 2020. Recognizing the critical role caregivers play in supporting the health of older veterans, especially during COVID-19, the VA has taken several measures for proactively identifying caregivers, assessing their needs, and matching them to available existing programs in VA's Caregiver Support Program,4 Geriatrics and Extended Care,5 or the community.6, 7 The VA has also been nimble in leveraging its technological capabilities and in transforming routine face-to-face care to virtual.8 This pivot to virtual care potentially creates opportunities to improve the caregiving experience by reducing transportation burden and increasing virtual in-home support, provided the veteran and caregiver have the tools, ability, and willingness to use technology. Here, we offer some recommendations for practices and healthcare systems to support high-risk veterans and their caregivers, using efforts underway at the VA (Table 1). VA CSP education tip sheet: VA CSP developed a tip sheet called “Caregiving During COVID” (https://www.caregiver.va.gov/pdfs/CSP-Caregiving-During-COVID-19_TipSheet-23April-2020.pdf#), available online on the CSP's Home Page. This was shared widely via e-mail, secure messaging using electronic health records, and social media. The public-facing VA caregiver support program website includes links to several online resources and information relevant for all caregivers (https://www.caregiver.va.gov/index.asp). The role of the caregiver is integral to patients' health and well-being, and the unintended negative consequences for caregivers must be addressed. This is particularly true during the COVID-19 pandemic. We acknowledge the incremental challenges in addressing these needs during this time when frontline providers are overwhelmed and home care is inconsistently available. This may be particularly difficult in settings that do not contain the supports and resources available in large integrated healthcare systems, like the VA. However, a team approach and targeted referrals may be sufficient for proactively identifying caregivers, assessing their needs, and matching them to available existing services. Any incremental increase in support may protect older adults and their caregivers during this rapidly evolving pandemic and make all the difference between older individuals remaining in the home or being institutionalized. It will be important to continue to monitor and support caregivers as the pandemic progresses because the impacts may be felt long after physical distancing requirements end. These efforts are well aligned with the Recognize, Assist, Include, Support, and Engage Family Caregivers Act, which requires the Department of Health and Human Services to delineate a national strategy for recognizing and supporting the more than 43 million unpaid family caregivers,9 and with the VA Maintaining Internal Systems and Strengthening Integrated Outside Networks (MISSION) Act.10 This work was supported in part by the U.S. Department of Veterans Affairs' Health Services Research & Development Service funded Elizabeth Dole Center of Excellence for Veteran and Caregiver Research (Office of Research and Development HX-18-015), of which most authors are part. The authors have no conflicts of interest to report relevant to this article. All authors contributed to the concept, preparation, and revision of the manuscript, and approved its final version. The contents of this publication do not reflect the views of the Department of Veterans Affairs. The authors assume full responsibility for the ideas presented.

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