Invisible until the pandemic, family caregivers are now on the front lines

For more than 30 years I’ve advocated for our nation’s family caregivers, a cause borne from my own experiences caring for loved ones. I have long known that they have not received the acknowledgment and support they deserve. One of the many sobering lessons of the current pandemic is that our nation’s family caregivers must be neglected no longer. Even before COVID, they numbered an estimated 53 million and millions more have been added to their ranks as the virus has spread across our country. They represent the front lines of care for their loved ones, yet their enormous contributions have remained virtually invisible to policymakers, politicians and health care professionals alike.   

Research shows that family caregivers are at increased risk of poor health and financial insecurity. They often struggle on behalf of their care recipient to navigate a cumbersome health care system that rarely acknowledges their role, and there are indications that less than 10 percent of caregivers get any services at all. The pandemic has only exacerbated their predicament.   

In the last 18 months, the essential role of these family caregivers has been revealed and even magnified. I have heard many stories from caregivers during this time: Spouses depositing meals outside the bedroom door while their partners quarantined; adult children delivering groceries to their elderly parents and having to carry out conversations with them from across the yard; distant relatives using video chat to keep tabs on family members who had no one nearby. Then there are the more distressing accounts: Parents who fell ill and then needed care for themselves and their small children, or the scores of women who felt they had no choice but to leave their jobs to look after aging family members or young children.   

This difficult time in our history has increased awareness of the challenges family caregivers face and has created what my friend and fellow advocate Melinda French Gates and I consider a window of opportunity. We must act now to solidify our commitment to these essential health care workers.  

I am encouraged that expert panels such as the RAISE Family Caregiving Advisory Council are crafting a strategy to inform a path forward. The newly introduced Build Back Better Framework is an important step, and I urge Congress to quickly pass this legislation, which will increase funding for home and community-based services and improve circumstances for many caregivers. These critical advances move us closer to meeting our nation’s long-overdue obligation to offer meaningful assistance, but there is much more work to do — providing insurance coverage for respite and coaching, enacting policies for paid family leave and creating tax credits to alleviate caregiver financial burden, to name a few.  

Another way to address these needs and build on the growing momentum is to establish a new Office of Caregiver Health within the U.S. Department of Health and Human Services (HHS). There are many types of caregivers, and their concerns range from mental health and substance use to employment policies and insurance coverage. Creating a single advocate within the federal government would improve coordination within HHS and across federal agencies, helping the government respond to caregivers without duplication of effort.    

An Office of Caregiver Health would ensure that family caregivers are represented in discussions of health policy, legislation and budget negotiations. It also would help break down the silos that can obstruct progress by creating ways to help caregivers regardless of payer or condition. Those who tend to injured veterans face many of the same challenges as those caring for older adults, so it is reasonable to expect the Department of Veterans Affairs and the Administration for Community Living to collaborate on materials and interventions. An Office of Caregiver Health would promote this kind of coordination.    

History is filled with calamitous events that have propelled historic change, often reshaping policy. COVID has demonstrated how critical caregivers are to a healthy American society, and we must seize this moment to invest in institutions that support them.   

The front line can be a lonely and vulnerable position when it is not backed by reinforcement. At present, we are charging caregivers with one of our nation’s greatest responsibilities — tending to people in need — without securing their ability to succeed. Now that COVID has shone a spotlight on America’s family caregivers, it is our responsibility to ensure that they receive the resources they require both now and in generations to come.   

Rosalynn Carter is a former first lady of the United States and the founder of the Rosalynn Carter Institute for Caregivers, a national nonprofit dedicated to promoting the health, strength, and resilience of caregivers, and the co-founder of The Carter Center.