The role of unpaid family caregivers is drawing focus as Congress decides the future of a hospital care at home waiver.
Unpaid family caregivers are increasingly a linchpin in healthcare as more patients opt to get care where they live and providers struggle to recruit and retain staff. Nearly one-third of individuals provide care or assistance to at least one person with an illness or disability, according to the University of Michigan’s National Poll on Healthy Aging released last week.
Related: Is healthcare relying too much on family caregivers?
Hospital-at-home programs are a growing example. More than 300 hospitals and 136 health systems across 38 states offer such programs through a Centers for Medicare and Medicaid Services waiver, which is set to expire at the end of December unless Congress acts. Under the waiver, patients receive twice-daily in-home visits by a nurse or paramedic, which is supplemented with virtual visits and remote patient monitoring. They may also receive meals or help with activities of daily living, if family caregivers cannot provide those supports.
While hospitals are expected to carefully screen patients for eligibility in hospital-at-home programs, the waiver does not have specific guidelines for screening family caregivers or what is expected of them.
Care-at-home company Contessa called for uniform standards around screening for caregiver burden when admitting patients to acute-care-at-home programs in an analysis published Wednesday. It echoes recommendations a bipartisan think tank recently made to Congress that called for more robust caregiver support as hospital-at-home programs expand.
Contessa, a unit of Amedisys, has hospital partners that carefully screen family caregivers, said Caroline Rogers, vice president of quality and safety — but she said other providers might not.
“There should be some assessment on the front end to set patients up for the safest care in the home,” Rogers said. “Sometimes [patients] get home and the [family] thinks it is too much or they think they can do it and after a couple of days, they can’t.”
The company also called for standardized education for unpaid caregivers.
The Bipartisan Policy Center also called for more family caregiver support in a list of recommendations to Congress on ways to improve hospital-at-home. The think tank said the waiver should be extended for five years, but called on CMS to adopt standardized language that clearly communicates what is expected of unpaid caregivers.
Family caregiver Jessica Kim thinks that could be a step in the right direction for home hospital programs. She said she did not feel adequately informed about what her role as a caregiver would be when her father was treated for congestive heart failure last year in a hospital-at-home program in Boston.
“I believe this program needs to exist,” Kim said. “I just think that the family caregiver is not seen as a priority to integrate and support some of the programs. Without that, it is not going to be as sustainable.”
Mass General Brigham’s home hospital program does not rely on family caregivers to provide any services to patients, such as meal preparation or toileting, unless caregivers are willing to provide them, said Dr. Stephen Dorner, the health system’s chief clinical and innovation officer.
Dorner acknowledged concerns about caregiver burden in hospital-at-home programs and said CMS should address them as the program evolves.
“You have to account for the living situation and that includes whoever else is going to be there,” Dorner said. “Providing [caregivers] with education and ensuring that you are not relying on them is very important.”
The role of family caregiving extends beyond hospital-at-home programs as a growing number of older adults are aging in place. Moving Health Home, a trade group representing home-based care providers, said in an email that caregivers are central to all models of home care which include home-based primary care, skilled nursing and therapy. All of the models the group is advancing take into account caregiver training, emotional well-being and necessary support, said Moving Health Home founder Krista Drobac in the email.
Home healthcare providers, such as Peoria-based OSF Healthcare, said they meet with family members before patients are sent home to ensure caregivers are comfortable providing any care their loved ones might need.
Still, some caregivers say they feel overlooked and overworked by a healthcare system that increasingly relies on them.
In Pittsburgh Wednesday, family caregivers talked about their difficulties providing care for their children, grandchildren and parents during a hearing with Senate Special Committee on Aging Chair Bob Casey (D-Penn.). Casey called on Congress to do more for family caregivers, such as expanding funding for home-and community-based services and passing paid family leave legislation that could benefit unpaid caregivers.
Family caregivers of some dementia patients are getting support through CMS’ new GUIDE pilot. The program, which launched last month, provides training and respite services to caregivers of dementia patients receiving care at home.
Others have been able to get some assistance through supplemental benefits provided in Medicare Advantage plans.
For example, SCAN Health Plan offers a variety of caregiver services in 85 Medicare Advantage plans available in California, Arizona, Nevada and Texas, said a company spokesperson. Unpaid family caregivers can access up to 40 hours of respite care a year, home-delivered meals up to 28 days annually and training classes.
Independence Blue Cross, which serves southeastern Pennsylvania, partnered with digital health company Carallel last year to offer caregiver support tools to Medicare Advantage plan members returning home following a hospital or skilled nursing stay. Independence Blue Cross expanded the benefit to all plan members in 2024 and will analyze its use and how the benefit impacted the total cost of care over the past two years, said Dr. Heidi Syropoulos, medical director of government markets.
Carallel has similar contracts with about a dozen other private insurers and hopes to sign up additional payers for 2025, said President and CEO Shara Cohen.
“We are a pretty efficient way for people to address a pretty high scale need,” Cohen said. I don’t think you are going to find a plan that doesn’t have some sort of caregiver strategy.”
But those strategies might not include as many supplemental benefits, as Medicare Advantage organizations face rising utilization costs. This year, 530 plans offered a supplemental benefit that provides support for caregivers including respite services and training, compared with 556 in 2023, according to ATI Advisory, a healthcare research and advisory firm. ATI said plans have also scaled back on other supplemental benefits that could be helpful to family caregivers such as home-delivered meals, non-medical transportation and adult day services.
