Soon after Jonathan Cottor’s son Ryan was born, he was diagnosed with spinal muscular atrophy — a degenerative disease for which, at the time, there was no treatment. The doctors essentially told Cottor and his wife, “‘Just take him home, love him, and don’t expect him to live to his second birthday,’” said Cottor. “Our world was shattered.”  

Contrary to that grim prediction, Ryan lived for 17 years, until midway through his senior year of high school. He had been accepted at Arizona State University, where he was planning to live independently in the dorm.  

“Ryan was incredibly bright and mature, but very physically challenged,” said Cottor, speaking at a recent National Academies workshop on family caregiving. “Ryan needed an adult caregiver for all of his daily living needs — eating, toileting, bathing, and even rolling over to change positions when he slept.”  

The latter happened at least two to three times every night, said Cottor. He or his wife would go turn Ryan and then crawl back into bed, hoping to fall back to sleep quickly. “We trained ourselves to be light sleepers, never a deep slumber, because we were always on guard,” he said.  

“Every parent of a medically fragile child dreams of a cure, but their second biggest wish is often something much simpler — a chance to rest,” said Cottor.  

He was among caregivers who shared their experiences at the workshop, which explored ways to better support family caregivers — a critical priority, given that roughly 53 million people in the U.S. care for a family member such as a child with complex medical needs, an aging parent, or a spouse who is seriously ill.  

“Despite the great joy and meaning that many people find in supporting their loved ones, they’re more likely to experience depression, anxiety, and chronic health conditions,” said Meredith Doherty of the University of Pennsylvania. “The health effects of caregiving are not a simple fact of life that we have to accept. They’re actually a product of how we as a society decide to use our resources.”

Expanding use of respite care

“Regardless of the age or condition of the person who is providing care, respite care is one of the most-frequently requested caregiver support services,” said Kim Whitmore, representing the ARCH National Respite Network and Resource Center. Respite care allows a regular caregiver to take a break while another person provides care to their loved one.  

There’s no cookie-cutter approach to how respite works, Whitmore said. It can be provided in home, out of home — where the care recipient goes to a day program or temporarily stays at a care facility — or informally by friends and family.   Respite can reduce stress and social isolation among family caregivers, as well as help avoid and delay costly out-of-home placements in facilities like nursing homes, explained Whitmore.  

Despite the many benefits of respite, there are currently a lot of barriers to receiving it, she said. A study by AARP and the National Alliance for Caregiving found that 86% of people caring for an adult are not receiving respite. Many people don’t know what respite is or where to find it, and those who do may not be able to afford it.  

“Most family caregivers do not qualify for publicly funded respite programs,” said Whitmore. “We don’t have enough public resources devoted to formal respite services.”   Other steps needed to advance respite include embedding it into existing systems and replicating respite models that we already know work, she said.

Integrating caregivers into health care systems

Multiple caregivers at the workshop described feeling unseen within the health care system — that they are provided little information, that their expertise and insights are not included in health care planning for their loved one, and that their own needs aren’t attended to.  

Karen Brisbon served as a caregiver to her mother, her brother, and her father for over 20 years. When she first learned her mother had cancer, she recalled, nobody told her what the next steps were or what to expect as a caregiver. “You do not know what is coming … There’s no guidance, there’s no up-front conversation with any doctor, any nurse, any social worker …” she said.  

As their journey progresses, caregivers may experience the opposite problem — that they have accumulated a wealth of knowledge about their loved one’s condition and care that is not acknowledged or used.  

Jessica Guthrie was 26 years old when her mother, Constance, was diagnosed with dementia. She described the frustration of not being listened to during health care visits, even though she is her mother’s constant caregiver and shows up with a notebook filled with notes, observations, and questions.  

“The biggest barrier has been feeling unseen, and not believed, as the family caregiver,” said Guthrie. “But in reality, I am the expert in Constance Guthrie. No one else is there but me 24 hours, seven days a week.”  

Caregivers provide critical insight, said Anna Chodos of the University of California, San Francisco. “We need that expertise to be in the care, part of the care plan, part of the care assessment.” Indeed, expert guidelines already instruct health care providers to identify and work with caregivers, but this generally doesn’t make its way into practice, she said.  

“The evidence is very copious that this just doesn’t happen,” said Chodos. Health care visits are structured around tasks that providers document and bill for, she explained. If engaging with caregivers is not in that structure, it looks to health care providers like it’s not part of the visit.  

There are some examples of how things are changing, said Chodos. For instance, the Centers for Medicare and Medicaid Services are developing a dementia guide model for health care providers that includes support for caregivers. With the model, which was launched last year to 390 organizations, providers will be held accountable for working with caregivers and reimbursed for doing so.  

And in 2024, Medicare started rolling out codes that allow providers to get reimbursed for training caregivers in tasks like wound care, infection prevention, behavior management, and helping with activities of daily living. “These codes really allow for that one-on-one training that we hear so often is needed by caregivers to feel informed and more empowered around their role,” said Tyler Cromer of ATI Advisory.  

Another part of integrating caregivers into the health system is considering their own health and well-being — a point illustrated by Debbi Harris, who cares for her son, Josh, who has complex medical needs. Harris explained the surprise and gratitude she felt when she started seeing a new primary care doctor, and the doctor asked her to tell the story of Josh.  

“None of my physicians had ever asked me about that,” she said. “And it has such an impact on my own [mental and physical] health. Caregivers have so many comorbidities because of caregiving … . And so now when I have my visits, she adds extra time just so we can talk about my caregiving journey.”

Lessening the financial toll

The workshop also explored ways to lighten the financial burdens that caregivers often bear.   “The cost of care is astronomical,” said Guthrie. After her mother was diagnosed with dementia, she combined work and caregiving, flying back and forth — sometimes every two weeks — between her job in Texas and her mother’s home in Virginia. But in 2019, her mother’s illness progressed to the point that Jessica left her job and moved back to Virginia to care for her mother full time.  

“I am no longer receiving a six-figure salary,” she said. “I’m no longer contributing to Social Security. I am losing my own financial stability — in addition to paying for care every time I come to [workshops] like this, or travel, or do other work events,” she said.  

Family caregivers in the U.S., most of them women, average 26 hours of unpaid work per week, Doherty said. Collectively that adds up to an estimated $375 billion in unpaid labor annually. Cumulatively, caregivers experience about $3 trillion in lost wages, benefits, and pensions, she said. “Caregiving demands time and resources, it can threaten job security, career advancement, and ultimately has implications for social and economic mobility.”  

Speakers talked about different ways to mitigate those harms. Molly Morris of the Self-Direction Center explained the “self-direction” model, in which the care recipient chooses their own caregiver, often a family member, and the caregiver is paid an hourly wage. This option is available, in some form, to Medicaid and VA beneficiaries in most states.  

Doherty spoke about the possibility of providing caregivers and their families with guaranteed income — a recurrent cash benefit that recipients can use as they see fit. She is co-leading a randomized controlled trial that provides $1,000 a month for 12 months to Medicaid beneficiaries with advanced cancer and their families. The study will track the impacts the money has on the health of patients, as well as impacts on caregivers — their long-term employment, earnings, use of public benefits, and health outcomes.  

Paid family leave — currently offered in 13 states and the District of Columbia — is a way to help those in the workforce balance caregiving with their jobs. Shawn Phetteplace of Main Street Alliance described efforts to advance these policies. Federal paid family leave is unlikely in the next few years, he said, but there is strong momentum on the state level. “There is a real sense of states building off each other, learning what worked, learning what didn’t work, and getting this done,” said Phetteplace.

Helping young caregivers

The workshop also explored the needs of a subset of caregivers who rarely get public attention — the over 5.4 million people under age 18 who provide care to parents, grandparents, or siblings. “Young caregivers, just like adults, can be primary caregivers where they have decision-making power as well as [provide] hands-on care; secondary caregivers who help other adults; or tertiary caregivers,” said Sharon Hamill of the CSU Shiley Haynes Institute for Palliative Care.  

Feylyn Lewis became a primary caregiver at age 11 after a mishap during a routine surgery left her mother unable to walk. “I helped my mother with her intimate care needs, showering, bathing, helping her get dressed, helping her for medications,” she said. “I did all of this in the home without any support … I was painfully isolated, scared, and alone.”  

When Lewis grew up, she got a Ph.D., focusing her research on caregiving among young people. She began her work with a set of 60 qualitative interviews with young adult caregivers in the United Kingdom and the U.S. that surfaced mental health as a ubiquitous problem. “They all told me that they were struggling, and they could connect [the depression and anxiety] directly to caregiving,” she said. Those interviews and a subsequent survey of adolescent caregivers in six European countries revealed that many young caregivers had thoughts of self-harm or suicide.  

“We have got to do more to support this group of children and young people around the world,” Lewis said. The U.K. has made progress on the issue, creating summer camps for young caregivers that offer support services, as well as free time and leisure, she said. And in every school, they have a ‘young carers champion’ who can connect them with services. The U.K. has also added to their common college application a question about whether applicants are caregivers, so that they can be connected with social services — a step this country could emulate, Lewis said. “We could do that here in the U.S. with our common application.”  

“Every topic we have mentioned today resonates with a child and youth,” said Melinda Kavanaugh of the University of Wisconsin, Milwaukee. She stressed the need to educate health care providers about these “hidden” caregivers. “There’s a whole world of caregivers that we’re not paying attention to.”

Related Resources

• Watch the workshop sessions

• Related reports from the National Academies