C. Grace Whiting, J.D., is the President and CEO of the National Alliance for Caregiving, a Washington, DC, nonprofit organization which builds partnerships in research, advocacy and innovation to make life better for family caregivers. She is also a licensed attorney with the D.C. Bar and serves on UnitedHealthcare’s National Advisory Board.
It’s hard to be thankful in the midst of a pandemic. I miss going to the movies with my friend Jane and eating dinner with my husband at the Mexican restaurant down the block. Gratitude, like patience, is in short supply as we grapple collectively with the trauma of the ongoing COVID-19 virus and the division in our communities about how to tackle it.
When I feel the rush of COVID-19 fatigue, I take a minute to think about the people we advocate for at the National Alliance for Caregiving (NAC). I think about the mother who is getting up, getting kids ready for remote learning and caring for an older parent, all while juggling her own meetings via Zoom. I think about the person caring for a friend who lives in a nursing facility, who has to stand outside the glass doors and wave hello for fear of transmitting the invisible but ever-present virus. I think about the spouse who is caring for their partner, day in and day out, with few breaks. And recognizing that family caregivers don’t need to be canonized as saints, I’m still filled with gratitude for the work of more than 53 million Americans who are doing this work and bridging the gaps in our health and social care systems.
At the National Alliance for Caregiving (NAC), we focus on closing knowledge gaps in caregiving research and how to translate that research into policies that will meet the needs of caregivers. We work in coalition with advocates at the local and state level or with other national leaders in bringing issues to Capitol Hill. Together, we believe we can empower, support and amplify the caregiver’s voice.
We work in coalition with advocates at the local and state level or with other national leaders in bringing issues to Capitol Hill. Together, we believe we can empower, support and amplify the caregiver’s voice.
COVID-19 creates barriers and opens conversations
COVID-19 has few silver linings, but one that comes to mind is increased visibility and recognition of caregiving. The transition to working from home for many in the workforce has given us a glimpse into more personal areas of people’s lives. Stepping away from work for tasks like managing medications feels more normalized and shareable. Caregiving is just another home-based activity, like feeding the dog or answering the door. Policymakers have taken notice too, as the Families First Coronavirus Response Act expanded paid family leave and paid sick days to care for those with COVID-19. This has not only made caregiving more visible but has helped non-caregivers understand how common caregiving is in today’s world.
Yet, visibility and understanding still need to be translated into solutions, especially as COVID-19 introduces new challenges. Many caregivers are fearful that bringing outside help into their homes could expose an at-risk person, such as an older adult or a child with disabilities, to the virus. The need to quarantine may result in caregivers losing in-person social networks and supports, negatively impacting their own well-being. Many may stop leaving home altogether, increasing loneliness and isolation. And at the same time that caregivers may feel a sense of honor and purpose in providing care, they also may experience a sense of loss, such as losing their own identity or having to continuously redefine their relationship with the person in need of care.
Ensuring that these caregivers feel heard and respected is critical to providing the best quality care for the person who needs care.
For families living in different homes, it’s a new world to stay close while living physically distant. Caregivers have been asked to take on public health safety measures, like quarantining and isolation, which can mean not being allowed to visit someone in a nursing facility or assisted living residence. In some places, gatekeeping keeps caregivers from participating in shared decision making or helping to coordinate care between different providers. Ensuring that these caregivers feel heard and respected is critical to providing the best quality care for the person who needs it.
Improving accessibility for all
As a member of the UnitedHealthcare National Advisory Board, I dedicate a lot of my time to understanding how people move through the care system — and exploring better ways to support them. Highlighting how research and advocacy inform everyday practice helps ensure the work we do positively impacts the lives of individuals who spend significant amounts of time comforting and serving others.
Highlighting how research and advocacy inform to everyday practice helps ensure the work we do positively impacts the lives of individuals who spend significant amounts of time comforting and serving others.
At NAC, we are actively mapping the impact COVID-19 has on caregivers during these challenging times. Through expert-led research and innovation working groups, we are creating new ways to advocate for caregivers and equip them and their supporters to step in and speak up about the impact of caregiving. Part of this mission includes meeting caregivers and their families where they are with affordable and approachable resources. Meeting virtually has been one example of this: we are able to share insights and resources more readily with caregivers — and provide them with ways to connect and network, despite the need for social distancing.
Expressing gratitude for today’s caregivers
It can be easy to assume that the care contributions that someone makes for their family, friend or neighbor are small gestures. The reality is that caregiving, in the aggregate, is the glue that keeps our health and social care systems running. AARP estimates that family caregivers contribute more than $470 billion in unpaid contributions in a single year, making them a half-trillion dollar unpaid workforce that makes it possible for people to live safely and independently for longer as they age.
Personally, I am motivated by the selfless contributions that caregivers make as they continually put the needs of others ahead of their own. As they continue to care, despite the pressures of a pandemic, the least we can do is notice. We can reflect the leadership they’ve shown to us by thanking them, hearing them and advocating so that the caregiving path can be a little bit easier.
This blog is written by C. Grace Whiting, who is a non-employee guest blogger, sharing perspectives on family caregiving in the health care industry. Whiting’s authored content outside of this blog may not be representative of UnitedHealthcare Community & State’s perspectives or business approach and should not be considered endorsed by UnitedHealthcare.