Headlines and data from across the nation confirm the sad reality: older adults and people with chronic conditions or disabilities face disproportionately adverse outcomes if they contract COVID-19. Family caregivers are the linchpin of care for these individuals and provide critical daily supports for them. Across the U.S., there are roughly 18 million people currently caring for an older adult. Even in the pre-pandemic environment, family caregivers faced a myriad of potential stressors. COVID-19 has made their critical, but typically unpaid job even more challenging by adding uncertainty and stress, limiting access to care, and complicating service delivery.
Prior to the pandemic, many states were already pursuing strategies to support the essential role of family caregivers to address the needs of their growing aging populations. For the last two years, the Center for Health Care Strategies, with support from The John A. Hartford Foundation (as well as the Milbank Memorial Fund, the May & Stanley Smith Charitable Trust, and the Gordon and Betty Moore Foundation) has assisted states in developing new opportunities to support family caregivers. State Medicaid agencies play an increasingly important role in meeting the needs of an aging population, and the COVID-19 crisis has made this work more important than ever. Below we outline challenges facing family caregivers in the COVID-19 environment and new opportunities for states to come to their aid.
COVID-19 Complicates the Essential Role of Family Caregivers
As the health system seeks to assist those who are most vulnerable to COVID-19, it is important to also support family caregivers across the nation to help them continue to provide much-needed care. COVID-19 is putting a variety of strains on family caregivers, including:
- Social isolation. Adults age 45 and older who rely on others to live on their own in their communities are often more isolated compared to younger adults. COVID-19 exacerbates this issue when family caregivers cannot access the typical social supports of friends and neighbors on whom they rely for social interactions and care. This further isolates people who need assistance, and their families.
- Potential burnout from suspended supports. COVID-19 has forced most home-based and congregate supports that family caregivers rely on – such as respite, home health aides, and adult day centers – to shut down, causing more work and potential burnout for caregivers. Many families sheltering in place with older adults are serving as full-time caregivers for the first time, without access to supports and training needed to perform clinical tasks, such as medication management or using durable medical equipment.
- Lack of access to or comfort with technology. Telehealth is allowing many people to maintain access to their providers during the pandemic. However, the technology is still difficult for some older adults and their family caregivers who may not be comfortable with these options, or have limited access to the internet or smartphones.
- Limited interactions with health care facilities. Family caregivers know the needs and abilities of their loved ones better than anyone. COVID-19 patients in the hospital, however, are generally isolated, with family caregivers unable to participate in-person to discuss treatment decisions or discharge planning. Although hospitals are striving to maintain communication with families in the current environment, without in-person communication it can be challenging to always include family caregivers in such important conversations, which can lead to unnecessary hospital readmissions at a time when facilities are already overtaxed.
- Financial hardship. Family caregivers with reduced work hours or who are unemployed due to the pandemic may be struggling to cover basic needs for their families. This financial hardship may lead to stress in the family caregiver/patient relationship, and force difficult decisions around prioritizing needs such as medications, food, and medical supplies. Furthermore, since it is still considered unsafe for high-risk older adults to be out in the community, family caregivers who are employed outside of the home are facing tough choices about returning to work with loved ones in their care.
State Opportunities to Come to the Aid of Family Caregivers
While states navigate this environment in the weeks and months ahead, there are opportunities to support family caregivers to help reduce the burden of these challenges:
- Pursue Medicaid flexibilities that support family caregivers. Many states have implemented multiple Medicaid flexibilities that support family caregivers, such as using certain available provisions in Appendix K for Home- and Community-Based 1915 (c) waivers. These provisions include new flexibilities for states to pay family caregivers for providing services that would otherwise be provided by formal workers who may not be currently available (e.g., Alaska, California, Connecticut, and Pennsylvania). In addition to reducing burdens of suspended services, this may offset some loss of income.
- Partner with system stakeholders to identify families’ most critical needs. Community-based organizations on the ground have a unique understanding of what families need. Many states are working with Area Agencies on Aging (AAAs) to develop outreach and intervention strategies in the current environment to expand service access to family caregivers and assess their needs while also potentially reducing risks related to social isolation. For example, in Massachusetts and Michigan, AAAs are providing wellness checks by phone to both older adults and family caregivers. Similarly, Minnesota is using specialists at the state’s Senior LinkAge Line to check in with older adults and family caregivers.
- Promote interagency and other stakeholder collaboration. Interagency collaboration is even more important now to pool state resources and streamline processes to reach more people. Medicaid health plans are working with states to rapidly respond to the most pressing issues for vulnerable populations and their family caregivers. Virginia, for example, has formed a workgroup with its six Medicaid health plans to develop strategies to better support family caregivers. In addition, New Hampshire recently established a multi-stakeholder Family Caregiver Integration Team, consisting of directors from departments within the Department of Health and Human Services, including the Divisions of Behavioral Health; Children, Youth, and Families; Economic and Housing Stability; Long Term Supports and Services and the Department of Military Affairs and Veteran Services. With each of these departments playing a critical role in the state’s COVID-19 response, this group provides an opportunity to develop aligned policies to address family caregivers’ needs.
Supporting Family Caregivers Beyond the Pandemic
As the need for family caregivers continues to grow with the aging population and the face of care delivery looks different in the post-pandemic environment, there will be an increased need to support the essential role of family caregivers. The John A. Hartford Foundation and CHCS look forward to continuing to celebrate family caregivers for their vital role and to work with states in seeing family caregivers through this crisis and beyond.
I have been a family caregiver for over ten years and am 75 myself. These last few months have had its affect on me and my patient. Lack of availability of med supplies, such as masks, gloves, med wipes, has been nerve racking. I am spent with all the extra precautions, and also the lack of empathy for caregivers in general. All the talk in the world is not good enough, if we are left out of the channels for supplies and education.
Dave, thank you for sharing. It is critical that we all fully listen to and understand the first-person accounts of how people like yourself experience caregiving. We have heard similar stories through our work with states participating in this initiative and our goal is to meaningfully reduce the burden of these challenges on caregivers like yourself.