Supporting Caregivers: Addressing the Rising Public Health Crisis of Caregiving

By Dr. Jessica Zitter, MD, MPH

Published October 18, 2021

There is a growing crisis of caregiving in this country, and the ongoing impact of COVID has pushed us to the breaking point. 53 million Americans—that’s one in five—work overtime, for free in roles for which they are untrained, unsupported, and uncompensated. And that number is growing fast.

Most people say they want to live out their last years at home—not in a nursing home, and definitely not in a hospital. With approximately 10,000 Baby Boomers turning 65 every day, more people are living longer at home while requiring some level of care for age-related chronic illness and disabilities. The problem is that fewer and fewer family caregivers are available to support those needing care in the home. Families are smaller and more geographically scattered than ever before and the professional caregiving workforce—which most families can’t afford—has been shrinking steadily for years. Caregiving responsibilities that used to be shared by extended family are now often falling on one person’s shoulders.

To keep a loved one at home, there are, of course, mounting housekeeping tasks. But over time, other responsibilities emerge, including managing medications and medical appointments. As the care recipient weakens, the caregiver must take on more intimate tasks, such as toileting and bathing, which can be socially fraught as well as physically exhausting. Sixty percent of family caregivers today perform tasks that were once reserved for trained medical personnel, like delivering injections or assisting with wound care.

The irony is that if the individual were in a hospital or institution, this work would be done by healthcare staff and paid for by insurance or Medicaid. But in the home environment of most Americans, there’s no money, insurance, or subsidies to support all of the work required. Family caregivers, most of whom are already fully employed, suddenly find themselves with three or four extra unpaid jobs. According to 2021 research from AARP, nearly eight in 10 caregivers report paying routine out-of-pocket expenses associated with caring for their loved one. And these costs are not insignificant: on average, caregivers report spending 26% of their income on caregiving activities.

We’ve reached the tipping point during the pandemic. Suddenly, COVID made caregivers out of us all. Parents of school-aged children became teachers overnight, toggling between their work and a job they were never trained to do. Many adult children of elderly parents in nursing homes decided it was safer to bring them home to care for them. To make matters worse, any support caregivers might have had from friends, relatives, or day programming for their care recipient was cut off by pandemic shut-downs and social distancing. As more of us are getting a glimpse into the world of the caregiver, it is a crucial time to raise awareness and demand more support for the people who support the most vulnerable.

I believe that every American—regardless of political party, race, or socio-economic status—should have a stake in fixing this problem. Who wouldn’t want to be able to care for a loved one in need? And who would want their loved ones to sacrifice their physical, emotional, and financial health to support them? So let’s all think carefully about how we—as a nation—want to treat our family caregivers.

There are many things we can do—in our personal lives, our communities, and neighborhoods, our workplaces, and in the halls of Congress. Let’s start by noticing caregivers and acknowledging the immense, important job they have taken on. Films like Caregiver: A Love Story can help by bringing viewers into the home of a real caregiver. Then, let’s all call for a national strategy to support this essential workforce—one that doesn’t rely on love or the kindness of strangers. That will require compassionate legislation from our congresspeople, and an infusion of cash. It’s an active and urgent conversation happening right now in Washington, D.C.

But we owe it to ourselves. Let’s make this most human experience as humane as possible.

Dr. Zitter, MD, MPH is a physician and director of Caregiver: A Love Story. After two decades of caring for critically ill patients, she is a strong advocate for a new approach to caring for the dying. She specializes in Critical Care and Palliative Care medicine, and practices at a public hospital in Northern California. Having herself participated in the default and indiscriminate use of technology on dying patients, with its resultant suffering, Dr. Zitter has come to view this situation as a public health crisis. She is committed to reorienting our care of the dying to a more collaborative process whereby the patient, rather than her organ or disease, is the primary focus of care.

Join Austin PBS, St. David’s Foundation, and AARP Texas on Tuesday, November 2 for an exclusive screening of Caregiver: A Love Story, the award-winning short film about the challenges facing family caregivers. Afterwards, hear from Dr. Zitter and local policy experts about the latest legislative developments in the quest to support family caregivers in Texas. This event is free to attend. Register here.