Family caregivers — critical members of the care team

Roughly 48 million Americans provide daily care for adult family members and other loved ones, delivering support that largely goes unrecognized by the health care system and society at large. As the nation ages at an unprecedented rate, the medical establishment can no longer afford to take these essential family caregivers for granted.

Increasingly, doctors and hospitals are working to build a culture of family-centered care that addresses both the needs of patients and the people who take care of them — most of whom are juggling caregiving responsibilities with paid employment and other familial responsibilities. Without meaningful resources and support, caregivers often suffer from burnout and significant health problems of their own, affecting patient care and stressing the entire health care system.

“Family caregivers are really vital care partners for the health care clinicians and the health care delivery system,” said Nancy LeaMond, AARP’s chief advocacy and engagement officer at a recent STAT Brand Studio virtual event. “Every day, family caregivers are keeping track of medications, watching for side effects, helping with injections, watching over post-surgical plans, and doing any number of things in concert with health care providers.”

Caregivers, the backbone of long-term care

The medical community has grown more reliant on unpaid caregivers because the long-term care workforce is shrinking just as aging baby boomers — the most populous generation in history — are living longer and struggling with more chronic or disabling conditions.

Consider that the United States will have an estimated 80 million individuals aged 65 and older by 2040, compared to 55 million in 2020. Current trends suggest that the number of at-home health care professionals needed to serve that aging population cannot possibly keep up with demand. Family caregivers already far outnumber the nation’s paid long-term care workers by a ratio of 10 to 1, according to an AARP analysis, and that gap is not likely to improve any time soon.

“So often, the family caregivers in our country are the de facto long-term care system,” said Robyn Golden, co-director of the Center for Excellence in Aging at Rush University Medical Center in Chicago. “That’s why it’s so critical to stop and get a sense of what’s going on, what matters to them.”

Yet doctors and hospitals seldom integrate family caregivers into the care team or inquire about their well-being. Only 13 percent of caregivers say that anyone from their loved one’s health care team has asked them if they are ready, willing, or able to provide care, said Golden, who also serves as associate vice president of social work and community health at Rush. “That’s too low,” she added. “We have to move the dial.”

Hospital innovation yields life-saving results

Rush University Medical Center is one institution doing its part. In 2019, it launched the Rush Caring for Caregivers initiative to address the needs of family caregivers, many of whom show signs of depressive disorders and chronic illnesses, in part because their own health falls by the wayside while they care for others.

A key step in helping caregivers is identification, which is why Rush lists family caregivers in a patient’s electronic medical records. Hospitals are required to do so in most states under legislation known as the CARE Act, which integrates caretakers into the hospital discharge process. But Rush goes beyond the mandate by making it easy to enter and access caregiver contact information in both inpatient and outpatient settings. The hospital’s system can also list multiple caregivers and identify their responsibilities.

The Caring for Caregivers (C4C) program also enables caretakers to schedule an initial meeting with a health care professional who can evaluate their needs, have sessions for themselves with a social worker to provide counseling, and arrange skill-building meetings with nurses, physical therapists, pharmacists, and other providers who can help them take care of their loved ones with confidence.

The C4C program, which caters specifically to people caring for adults ages 60 and older, has yielded impressive results. Rush reports statistically significant reductions in signs of anxiety and depression among participating caregivers. Meanwhile, the care receivers are making fewer visits to emergency rooms, experiencing fewer hospitalizations, and staying for shorter amounts of time when they are hospitalized.

These results underscore how helping caregivers also helps a hospital’s bottom line. “All those things matter not just to them, but to the health systems that we’re working with,” Golden said.

Other hospitals are now testing the model, which was developed in part with funding from the RRF Foundation for Aging. In 2022, six health systems piloted the Caring for Caregivers model in partnership with Institute for Healthcare Improvement using funding from The John A. Hartford Foundation. More recently, the foundation awarded Rush’s Center for Excellence in Aging another grant to help share the Caring for Caregivers model with 25 to 40 other health systems.

Policymakers are listening

Advocates are reporting huge policy gains for family caregivers.

LeaMond cites AARP’s support of the CARE Act, which inspired Rush to integrate detailed family caretaker information into its medical records. The legislation, now law in 45 states, also requires hospitals to tell family caregivers when their loved ones are discharged and to provide caregivers with guidance on how to transition patients from the hospital to home.

In addition, AARP has advanced hundreds of other common-sense policies at the state level that affect more than 174 million people and provided input on a federal executive order that aims to improve access to care and support caregivers. That order, signed by President Biden a year ago, has led to Medicare payments for certain providers who train family caregivers on how to administer a loved one’s treatment plan.

Meanwhile, several bipartisan bills are winding their way through Congress, including one that would create a tax credit to help ease caregivers’ financial burdens and another that would allow Health Savings Accounts (HSAs) and Flexible Spending Accounts to cover eligible expenses for a parent as well as a child.

LeaMond said that these types of initiatives are gaining traction because caregivers have evolved into a vocal political force. “Caregivers may be the busiest people on the face of the Earth,” she said. “But they’re quite anxious to get help, and they were willing to work with us across the country.”

For more information, visit AARP.org.