Proceedings of a Workshop—in Brief

Convened June 5–6, 2025

Strategies and Interventions to Strengthen Support for Family Caregivers for Individuals with Serious Illness or Disability

INTRODUCTION

As the number of individuals of all ages living with serious illnesses such as cancer, dementia, heart disease, kidney disease, and neurodegenerative diseases rises, family members and others are increasingly involved in providing direct care for these individuals. While caregivers can derive significant satisfaction from caring for a loved one, research shows that caregivers can experience physical, psychological, emotional, and financial burdens, as well as a decline in their own physical and emotional health. The National Academies of Sciences, Engineering, and Medicine (the National Academies) held a workshop on June 5 and 6, 2025, to discuss issues around caregiving. The purpose of the workshop was to

• Examine evidence-based interventions and strategies that effectively address the physical, mental, and financial burdens of caregiving for cancer and other serious illnesses, including the role of palliative care.
• Examine the special needs of different caregiver populations (e.g., children, older adults, individuals with disabilities).
• Consider how successful programs can be scaled and disseminated.
• Explore policy opportunities to support family caregivers, including employer/workplace-based policies and programs.

The workshop builds on a large body of work and various activities on caregiving at the National Academies and particularly the work of the Roundtable on Quality Care for People with Serious Illness; the National Cancer Policy Forum; and the Forum on Aging, Disability, and Independence, all of which collectively sponsored this workshop along with stand-alone support from the U.S. Centers for Disease Control and Prevention.¹ Peggy Maguire, Cambia Health Foundation, explained that the workshop was planned as an information gathering session to highlight the need for family caregiver support, explore current initiatives, and identify challenges and potential opportunities moving forward (see Box 1 for highlights from individual workshop participants on caregiver lived experiences, research, and policy and Box 2 for key messages noted by individual workshop participants).

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FAMILY CAREGIVER EXPERIENCES

The first workshop session, said Rita Choula, AARP Public Policy Institute, was designed to highlight the experiences and needs of family caregivers. Four caregivers shared their unique stories of caring for their loved one living with a serious illness or a complex, lifelong disability. Choula stressed that these speakers were the experts in the room—they are representative of the 53 million caregivers in the United States who provide complex care, coordinate and communicate with healthcare providers, and navigate challenging systems. She encouraged workshop participants to take these stories back to their workplaces and reflect on how the experiences of these caregivers could inform changes in policy and practice.

Karen Brisbon is a former caregiver to her brother, Alan; her father, Beresford; and her mother, Ruth. When you start the journey of caregiving, Brisbon said, “You don’t realize it’s a journey.” She explained that when she started caring for her family, she was acting as a daughter and a sister. “There is no roadmap when you find out

that a loved one is sick; there is no way to know what is coming and how much patience, courage, and strength it will require,” said Brisbon. When Brisbon’s mother was diagnosed with breast cancer in 2000, the first step was accepting the diagnosis. Radiation and chemotherapy brought an emotional toll—from seeing the IV drip in her mother’s arm, to seeing her mother without hair. Fortunately, Brisbon’s mother survived, but in 2007 her brother was diagnosed with prostate cancer. She told her brother that she would be there for whatever he needed, but she emphasized that at the time, she had no idea what this would mean. Ultimately, it meant becoming his care manager. Brisbon helped her brother manage and navigate countless appointments and treatments at different facilities and with different specialists. She moved in with him after chemotherapy in order to feed him and manage his pain. She learned how to administer pain medications and cared for him through nights of vomiting. As a caregiver, she said, she was “swirling” with her own emotions while at the same time acting as a medical technician. When her brother moved into hospice care, a social worker told her that it was time for her to be a sister rather than a care manager. The system of care management during illness “should be flipped,” said Brisbon—caregivers need help managing and coordinating care so that family can simply be family. “I had no time to be the sister to my brother until two days before he passed away,” she said. Afterward, Brisbon’s father was soon diagnosed with advanced prostate cancer. She coordinated the hospice agency and the aides and administered fentanyl and morphine to her father. Administering these types of medication was “an added stress that no caregiver should have to deal with,” she said. Brisbon also cared for her mother, who lived in an assisted living facility while suffering from congestive heart failure and dementia. In all of these experiences, said Brisbon, there was a huge disconnect between the various providers and organizations. The parties “weren’t talking at all,” forcing Brisbon to take on the role of coordinator, connector, and organizer. “This is the biggest challenge,” she said. There is a need for policies and personnel to help caregivers with the many tasks they take on, from financial management to coordinating appointments and facilitating hospice care. No two caregiver journeys are the same, she said, but all caregivers need more support.

Jonathan Cottor, National Center for Pediatric Palliative Care Homes, is a former caregiver to his son, Ryan, who was diagnosed with spinal muscular atrophy as a baby. As there was no cure or treatment, the family was told they should take him home, love him, and expect him to die before his second birthday. “Our world was shattered,” said Cottor. Ryan died in 2018 at 17-and-a-half years old, said Cottor, and needed an adult caregiver for his daily needs. He had many surgeries and hospital stays, used a wheelchair and respiratory machines, and needed assistance eating, toileting, and changing position when he slept. For 17 years, Cottor and his wife would trade off flipping Ryan over two or three times a night and sleeping when they could. When Ryan was sick, the nights were much more intense, requiring nebulizer treatments every 45 to 60 minutes. Cottor and his wife would trade nights sleeping on an inflatable mattress next to Ryan; one would try to catch up on sleep while the other was a “zombie.” Cottor shared a chart he made of the caregiving needs of Ryan and his older brother Ethan, who was a typical child. The basic routines of life—brushing teeth, eating, bathing, getting ready for bed—took Ethan 129 minutes per day, and he managed it all himself. For Ryan, these activities took 265 minutes, and all required the assistance of an adult caregiver. This additional 136 minutes, said Cottor, adds up to over 820 hours a year, or more than 34 days. Caring for a medically fragile child is far more overwhelming than parenting a typical child, he said, and they needed help. They eventually were approved for nighttime nursing, but finding reliable help was challenging. “Every parent of a medically fragile child dreams of a cure,” said Cottor, but their second biggest wish is often something much simpler: a chance to rest. After Ryan’s death, Cottor quit his job, went back to school to complete a master’s in public health, and founded the National Center for Pediatric Palliative Care Homes and its flagship program, Children’s Respite Homes of America. The goal of these organizations, he said, is to unify, advocate, and bring attention to critical community-based support systems for medically fragile children and their families.

Jessica Guthrie, a full-time caregiver to her mother who is living with Alzheimer’s Disease, started by sharing a clip of herself from a documentary on caregiving. In the video, she said that she was 26 years old when her

mother Constance was diagnosed with Alzheimer’s, and she felt very alone. As a young Black woman early in her professional career, her peers were not taking care of parents; full-time caregiving made her feel like her world was “crumbling.” However, she learned to slow down and find joy in the little things. “Every moment you have is a chance to make a new memory,” she said, and no matter how advanced the disease is, there are still moments of connection and joy. After the video concluded, Guthrie said that her mother is now 76 years old, and she is no longer verbal or ambulatory. However, she said, Guthrie is certain that her mother knows who she is, and that she is caring for her with the “utmost dignity and respect.” Based on her experiences, Guthrie shared her insights into the burdens and realities of caregiving. The first challenge, she said, has been the lack of information and training on dementia. She created systems and routines based on her own knowledge but had no idea what to expect for the future. For example, she was not prepared for her mother to stop walking, and she was not aware that she could ask for home health physical therapy. The lack of information meant that she was often reactive rather than proactive, and it was often too late to take advantage of programs and opportunities. Guthrie’s second insight was around the need for medical professionals and others who work with caregivers to operate with “clarity, consistency, and communication.” When professionals interact with caregivers in this way, caregivers are less stressed, and don’t need to overly advocate or defend their choices. The biggest barrier, however, was feeling “unseen and not believed” as the caregiver. After caring for her mother for 10 years and nine months, Guthrie said that she is the “expert in Constance Guthrie.” She is there 24 hours a day, 7 days a week, during the day and in the middle of the night. The hospice nurse, on the other hand, is there for 20 minutes. Given this, “why aren’t we trusting the family caregiver to provide the story, to give you the insight, to tell you all the details?” Finally, Guthrie said that the financial cost of caregiving is “astronomical.” She left her job in 2023 when her mother’s disease was progressing; as a result, she is no longer receiving a salary or contributing to Social Security, all while also paying for her mother’s care. She is losing her own financial stability due to caregiving. The caregiving journey, she said, requires not just “showing up and caring” for a loved one but also holding space for the changes and new realities for yourself as a caregiver.

Debbi Harris is a mother and caregiver to her son Josh, who was born prematurely and had a brain hemorrhage at birth. The family was told that he only had a few months to live; he is now 32 years old. Josh has complex medical needs as well as disabilities, said Harris; he is dependent on a ventilator, his tracheostomy tube needs to be suctioned continuously throughout the day and night, he is not able to regulate core functions such as breathing, heart rate, and blood pressure. She emphasized that despite these challenges, Josh is a robust and vibrant young man and a “powerful personality” in their home. “We are so grateful for the opportunity to care for him,” she said. However, after 50 surgeries, countless procedures, and 32 years of caregiving, there is a lot of “anticipatory grief” and wondering when his time will come. For 32 years, someone has been awake with Josh to provide care; “He has never been left alone, no one has ever been able to sleep.” The family has put together a group of people to care for Josh through their network, which includes military benefits and county and state benefits, said Harris. It is a “delicate machine of people” made up of family members and home care nurses. Several years ago, Harris was in the hospital with an infection, and at the same time Josh was very sick. It was the first time in her life that she had not been there for him, she said, but the rest of his caregivers stayed with him around the clock, for no pay, to take her place. There are burdens of caregiving that go beyond the actual care, said Harris; putting together and managing a team of caregivers requires being on-call 24 hours a day. When things happen—such as other illnesses in the family—it becomes even more challenging to manage the caregiving team. Another challenge, said Harris, has been getting authorization for the level of care Josh needs at home. When he is sick, the family works tirelessly with providers to keep him out of the hospital (where he would be exposed to other germs), but their hard work to keep Josh out of the hospital means there is a lack of documented hospitalizations, making it even more difficult to get authorization for home care. This is frustrating,

she said, because caregivers are doing what is in Josh’s best interest, as well as relieving the hospital’s burden, but are penalized for doing so. Palliative care has been an enormous help for Josh and his family, with its focus on making Josh comfortable and optimizing his quality of life. Harris said that Josh’s palliative care doctor recently came to the house and brought the hospitalist with him; this was a “magical opportunity” for the hospitalist to see Josh out of the hospital and in an environment where he is thriving. When he does go to the hospital again, his plan of care will be more effective because the hospitalist has taken the time to get to know Josh and his family better. Harris closed by sharing a story that she wrote, called “The Category of Us,” available to read in the Complex Care Journal.²

The panel featured a wide variety of family caregiving experiences that reflected on the challenges, as well as the joys, of caring for an individual with a serious illness or complex, lifelong disability. In addition to the highlights in Box 1, the caregiver experiences reflected in this session showed that one person compassionately noticing them and their struggles can have a tremendously positive impact on their desire to be seen, as noted by Brisbon and Harris.³

CAREGIVER POLICY LANDSCAPE

The second workshop session examined the policy landscape for supporting caregivers and the connections between federal actions, health systems, states, and employers. Caregiving is universal, said Alison Barkoff, George Washington University. Nearly everyone will either provide care or receive care at some point in their life. Many of these caregivers have had to step in because they could not access formal care for their loved one, she said, and this has financial, physical, and mental health effects for the caregivers. There is strong bipartisan support for caregiving policies, said Barkoff. In 2018, the RAISE Family Caregiver Act became law; it directed the Administration for Community Living to bring together researchers, state officials, caregivers, and others to develop a national strategy to support family caregivers. The issue of caregiving gained visibility during the COVID-19 pandemic, which shone a spotlight on the fragility of the care infrastructure and led to a 2023 Executive Order that directed every federal agency to advance strategies to strengthen the care system.⁴ In 2022, the National Strategy to Support Family Caregivers⁵ was presented to Congress and outlines important roles for multiple stakeholders, including the executive branch, Congress, states, business, philanthropy, and advocates. While there has been growing momentum toward better caregiving policies, she said there are also some “serious headwinds.” For example, she noted that Medicaid is the primary funder for home and community-based services, and also provides support for family caregivers, so if states face reductions in Medicaid funding, these “optional services are likely to be cut first, and family caregivers will take on even a greater burden.” Despite challenges, said Barkoff, “caregiving is having its moment,” and at some point, the politically impossible will become the politically “must-do.” The issues around caregiving impact all of us, she said, and it is critical that advocacy and momentum continue to push policies forward.

Jason Resendez, National Alliance for Caregiving, agreed with Barkoff that there is growing recognition of the importance of caregiving, which has resulted in policy changes, along with a culture shift. Resendez told workshop participants about his organization’s efforts to support implementation of the National Strategy to Support Family Caregivers. By taking on care responsibilities, caregivers create value for the system, he said. By the end of 2025, one organization estimates that nearly $300 billion worth of care will move from institutions into homes and communities (Bestsennyy et al., 2022). Yet the system does not recognize or value this care, said Resendez. One of the goals of the national strategy underscored the importance of integrating family caregivers into care teams. This will require a cultural transformation within health systems, he said, but also a change in payment structures. New reimbursement codes were introduced in 2024 to pay care providers for the time it takes to train family caregivers on activities

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the help their loved one meet medical goals. This will not change caregiving overnight, he said, but it is a step in the right direction toward valuing the contributions of caregivers. Another important development has been the move to pay family caregivers when a direct care worker is not available. However, Resendez said that there have been recent attempts to limit this program, despite an acute shortage of direct care workers. There has been momentum building to support caregivers—through paid family and medical leave, long-term social insurance programs, and caregiver tax credits—but there is a need for advocacy and action to keep the momentum going. “Care is a constant in our lives,” said Resendez, from our first breath to our last. “Care is our common ground, and with common ground we can build policies that support caregivers and their families” said Resendez.

Role of States

States have an enormous role to play in supporting caregivers, said Wendy Fox-Grage, National Academy for State Health Policy. States regulate and license all health providers, distribute funds for Medicaid and other programs, and make decisions about how to use federal and grant funding. Medicaid programs look different in every state, and states have quite a bit of flexibility in how to spend certain funds. The COVID-19 pandemic, said Fox-Grage, had two major impacts on caregiving. First, it put a spotlight on the importance of caregivers, and second, it exacerbated the shortage of direct care workers. States received additional funding due to COVID, and many chose to use these funds for programs such as paying family caregivers. However, the COVID funds are expiring, and if Medicaid funding is decreased, Fox-Grage predicted that states might limit available caregiver services to those with the greatest need. For example, family caregivers in rural areas may need more support because there are fewer options for paid caregivers or institutions. Public–private partnerships could potentially help fill gaps left by Medicaid shortages, said Fox-Grage, and professionals could come together across disciplines to advocate for caregiver support. Resendez added that employers also have an important role to play, given that 60 percent of caregivers are working while providing care (AARP and National Alliance for Caregiving, 2025). With anticipated cuts to social services, employers may need to expand their support for their employees who are also caregivers.

CAREGIVING POLICIES, PROGRAMS, AND FINANCING

In the third workshop session, speakers described interventions aimed at improving support for caregivers. The interventions fell into three categories: financial support, respite care, and care coordination.

Financial Support

The average unpaid caregiver works about 26 hours a week, said Meredith Doherty, University of Pennsylvania. With millions of unpaid caregivers, this adds up to an estimated $375 billion in unpaid labor and about $3 trillion in lost wages, benefits, and pensions. Taking on caregiving has implications for a person’s job security, career advancement, and social and economic mobility, and these financial burdens are associated with increased depression, anxiety, and chronic health conditions. These health effects are not a simple fact of life that needs to be accepted, said Doherty; these health effects are a product of how society decides to use resources. Only 11 states have implemented paid family leave, and only half of states allow spouses to be paid for caregiving. Doherty said that obtaining any financial support for caregiving involves navigating a patchwork system with high administrative burden and low compensation. One simple and evidence-based solution, she said, is guaranteed income in the form of a recurrent, unconditional, and unrestricted cash benefit. Guaranteed income has a relatively low administrative burden, she said, in part because it is not necessary for the recipient to prove need, and the payer does not need to surveil the use of the funds. Doherty is co-lead on the Guaranteed Income and Financial Treatment (GIFT) Trial, which provides unconditional cash transfers to Medicaid beneficiaries with advanced cancer and their families. The study randomized 200 Philadelphia-area individuals and gives half of them $1,000 per month for 12 months via direct deposit. Researchers are measuring patient outcomes, including financial stress, depression, quality of life, access to and adherence to care, and mortality, as well as using health care utilization data to look at cost effectiveness. Caregiver outcomes being measured include long-term employment, earnings, public benefits use, and health. Researchers will also conduct qualitative interviews with both patients and their caregivers to explore the mechanisms underlying financial stress and to identify whether and how the additional income helps them to cope with this stress. Doherty shared a

story from this study to illuminate the power of financial support. A single mother had to leave her security guard job when she was diagnosed with breast cancer, and her daughter had to withdraw from college to work to pay rent. The family was randomly selected for the intervention in the GIFT Trial and received some additional money through grants. The additional $20,000 per year allowed the daughter to finish school, setting her up for the future and making an intergenerational impact on social mobility. Caregiving is invisible labor that holds up the entire health care system, said Doherty, but it continues to be treated as a private burden. Guaranteed income is not a silver bullet, but a “little bit of extra cash can go a long way” in improving life, dignity, and comfort.

Another approach for supporting caregivers financially, said Molly Morris, The Self-Direction Center, is by paying them for the care they provide. When an individual with a disability or complex health needs qualifies for home and community-based services through Medicaid, they are often given a choice: care provided through an agency or self-direction. Self-direction, explained Morris, means that the person needing care can recruit and hire their own caregivers; often, the caregivers they choose are family members. Most Medicaid programs allow family caregivers to be paid when they provide “extraordinary care,” defined as “care exceeding the range of activities that a legally responsible individual would ordinarily perform... necessary to assure the health and welfare of the participant and avoid institutionalization.” Paying family caregivers can allow parents or spouses to stay home with their loved one and provide necessary care. Research comparing self-direction to agency-based care has found that self-direction has a number of benefits, including superior quality outcomes, enhanced safety and trust, culturally competent care, and practical advantages (Brown et al., 2007). The number of people participating in self-direction has grown substantially, said Morris, more than doubling since 2011 to 1.5 million participants in 2023. This growth was accelerated by the COVID-19 pandemic, when people did not want outside caregivers coming to their home; many states changed their policies to allow payment of family caregivers during that time. Unfortunately, she said, there are misconceptions about paid family caregiving and fears about fraud and abuse, such that some states are considering ending these programs. There is a need to educate policy makers on the benefits of self-direction and paying caregivers, she said, and to put systems in place to train family caregivers to ensure that they are following the rules appropriately. Self-direction is supported by evidence, and there is a roadmap for how to implement these programs well. People with disabilities and complex health needs ought to be empowered to choose their own caregivers—whether family or not—and these caregivers ought to be compensated for the important service they provide, said Morris.

Respite Care

Caregiving is hard work, said Kim Whitmore, ARCH National Respite Network and Resource Center, and caregivers sometimes need a break from that work. Respite care is “planned or emergency care provided to a child or family with special needs in order to provide temporary relief to family caregivers who are caring for that child or adult.” Importantly, this relief must result in a measurable improvement in caregiver well-being; Whitmore noted that sometimes a simple physical break is not enough. Respite care is among the most requested support by caregivers. Respite care can reduce stress, anxiety, and social isolation for caregivers and can help avoid or delay more costly out-of-home placements, emergency room use, and hospitalizations. Unfortunately, said Whitmore, several barriers prevent caregivers from getting the break they need. Many caregivers may not know that respite services exist or whether they are eligible for them. Some caregivers, said Whitmore, think of themselves as “just family,” and thus not an eligible or appropriate recipient of support. There is also limited public funding for respite care, as well as a shortage of programs and trained providers. Some caregivers may be reluctant to take time for themselves or to hand care over to another person. For these caregivers, Whitmore said, respite care may increase stress, because they spend their time worrying about what is happening with their loved one. For respite care to be successful, a caregiver must identify as a caregiver, acknowledge a need for respite, accept the offer of respite, and have access to respite services that meet the family’s needs. If a caregiver gets the relief they need through respite care, the benefits include improved health and well-being, quality of life, societal outcomes, and reduced cost of care. Whitmore outlined

the steps needed to reduce barriers, build capacity, and increase confidence in respite care:

• Replicate and scale up successful programs.
• Embed respite care into comprehensive care models.
• Build systems for caregivers to request and receive respite care to improve access.
• Engage new partners, including insurers, employers, and faith communities.
• Reduce program inflexibilities and restrictions.

For more information, Whitmore pointed workshop participants toward two publications produced by the ARCH National Respite Network and Resource Center: Measuring the Value of Respite⁶ and Recommended Common Data Elements (CDEs) for Respite Research.⁷

Melissa Zimmerman, Jewish Family Service (JFS), spoke to workshop participants about a grant-funded respite program in Utah. The goal of the program was to provide respite care to low- and moderate-income families who could not afford to hire in-home health care workers. The key initial step to implementing the program, said Zimmerman, was conducting outreach and building new community partnerships to get the word out. When a potential participant was identified, a pre-assessment was conducted with the caregiver to talk about the need for respite. If it was determined that the caregiver was a good fit, a comprehensive assessment was conducted, using the Kingston Caregiving Stress Scale. Participants were rated as having low, moderate, or high stress, and dollars were allocated based on the level of stress. Caregivers were given the decision-making power to choose the respite provider, said Zimmerman, while JFS coordinated and facilitated payments. Once respite services began, JFS checked in monthly with caregivers. At the end of the program, the Kingston Caregiving Stress Scale was administered again to see if the respite intervention makes a difference in caregiver stress. In the first year of the program, 34 caregivers received respite support from 13 different providers, for a total cost of just over $115,000 for 2,368 hours of respite care. There were several challenges identified in the first year, said Zimmerman. It was difficult to get the word out and to overcome people’s reluctance to accept help. She noted that there can be stigma and guilt associated with asking for help. Some caregivers wanted to save their respite hours, either for a planned vacation or in case they needed it more in the future, which presented logistical challenges. As the program moves forward, Zimmerman said they would like to be able to conduct assessments virtually to reach rural communities, address transportation as a need of caregivers, and expand their partnerships with other service providers. Zimmerman shared a story from one of the caregivers who participated in the program: Lisa’s parents both have memory loss, and her father was the primary caregiver of her mother until a recent diagnosis of advanced bladder cancer. Given the new diagnosis and the resulting mental, physical, and cognitive decline, Lisa’s caregiving burden increased significantly in a short period of time. She received a grant for respite hours and reported back that the program significantly reduced strain and stress, helped fulfill her parents’ wishes of aging at home, and connected her to other valuable resources. She is now participating in a caregiver support group and receives services from other community partners.

Care Coordination and Transitions

Health care providers and teams can do more to engage with caregivers, said Anna Chodos, University of California, San Francisco. Providers are aware of the importance of caregivers and are often encouraged to engage and assist caregivers, but the evidence suggests that caregivers’ needs largely go unaddressed by providers. Engagement with caregivers has benefits for patients, caregivers, and health care providers. When providers share information with caregivers, patients and caregivers are more satisfied with the care, and caregivers feel less stressed and have a better quality of life because they feel more prepared and informed. When a caregiver shares details about a patient’s daily life with a provider, the provider has more information and context with which to provide care. When caregivers are integrated into care plans—such as discharge plans—it can reduce the risk of the patient being readmitted to the hospital. Chodos shared two examples of initiatives that seek to improve caregiver engagement. The Guiding an Improved Dementia Experience (GUIDE) model is a project of the Centers

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for Medicare and Medicaid Services (CMS) that offers a package of services to people with dementia and their caregivers. A survey is used to assess caregivers for their level of strain, and they are offered respite services if appropriate. Caregivers are provided with skills training, dementia education, support groups, access to a personal care navigator, and 24/7 telephone access to support. In contrast to the usual model of dementia care, in which patients are the focus rather than caregivers, GUIDE focuses explicitly on caregivers and seeks to improve the quality of life of patients through caregiver support. This program is in its first year, said Chodos, and is slated to continue for another seven years. The other program she highlighted was Caregivers as Partners in Care Teams (CAP-CT). CAP-CT is a nationwide training program that provides health care teams with the skills and confidence to include family caregivers in a patient’s care journey, said Chodos. The three-part framework of CAP-CT involves teaching providers to identify caregivers, engage with them around their caregiving role as well as their emotional and social needs, and support the caregiver by connecting them to resources.

Opportunities also exist to increase flexibility in the ways clinicians can support family caregivers, which can ease transitions between care facilities and home and overall care coordination. Tyler Cromer, ATI Advisory, spoke with workshop participants about policy changes that are happening within Medicare Fee-for-Service (FFS) and Medicare Advantage. In FFS, she explained, practitioners use individual billing codes to get reimbursed for services provided. Recently, existing codes have been expanded and new codes have been implemented to reimburse providers for time spent with caregivers, and there are new codes to support health-related social needs and advanced primary care services, said Cromer. These codes reflect an overall shift to allow services to be provided in a more flexible and responsive manner, she said. As of 2025, a range of codes exist to support caregivers in evaluation, assessment, training, and condition management. Cromer noted that CMS had long resisted implementing codes for caregiver training but decided to move forward based on comments and feedback around the meaningful role of caregivers in caring for and supporting Medicare beneficiaries. In the Medicare Advantage program, private insurers have been given authority to offer additional benefits over the base Medicare benefits; these benefits can include support for caregivers, respite care, counseling hotlines, in-home support services, adult day services, extended meals, and non-medical transportation. While these benefits are not being offered by all plans, there are a significant number of individuals who can now access these services, said Cromer. The Center for Medicare and Medicaid Innovation (CMMI) is also exploring new avenues to support caregivers, said Cromer. In addition to the GUIDE program discussed by Chodos, the recently released CMMI strategy indicates interest in supporting caregivers through, for example, “payments to caregivers to better support those experiencing cognitive or functional decline.” Across all parts of Medicare, said Cromer, there is a growing awareness about the important role of family caregivers, as well as many positive changes in policy and practice.

WORKING CAREGIVERS

One in five employed adults are also caregivers, said Rebecca Kirch, National Patient Advocate Foundation. The fourth workshop session explored the unique challenges and needs of working caregivers and considered how employers can offer support through policies and programs.

Crystal Denlinger, a physician executive and caregiver to her parents, began the session by telling participants about her journey caregiving for her parents while also completing her medical degree and working as a physician. The journey began during her third year of medical school when her father’s cancer returned. Her father’s medical care over the next nine years followed Denlinger’s training and career path; she set him up with doctors in the institutions where she worked and would visit his hospital or clinic room in between her work shifts. She and her parents eventually moved in together into a two-bedroom apartment. With Denlinger working a full-time job as a junior academic oncologist, and her mother unable to care for her father alone, they employed 24-hour private pay home health aides. She juggled multiple responsibilities—writing a grant application while also navigating acute rehab and discharge plans and choosing whether to put her energy toward caring for her father at night or her patients the next day. Nine months after her father died, her mother was diagnosed with early-stage cancer. Again, Denlinger

dealt with competing responsibilities to her family and her patients. Her mother became unable to live alone and developed progressive dementia. Over the next 5 years, Denlinger cared for her mother while growing her career and climbing the academic leadership ladder. There were times, she said, when she would be simultaneously managing her mother’s home care aides, fielding calls from patients, and talking with colleagues about her research. During the pandemic, Denlinger took a job that allowed her to work remotely and then hybrid. “I couldn’t care for people 24 hours a day anymore, both in clinic, at work, and at home,” she said. It soon became clear, said Denlinger, that the years of caregiving had impacted her career. She had passed up jobs and opportunities because of caregiving responsibilities and had spent her nights and weekends caregiving instead of working on her research projects. She moved her mother into a memory care facility in 2022; while this is something she “swore” she would never do, the choice was between moving her mom to a facility or leaving the best job she’d ever had. Now in the next step of her caregiving journey, Denlinger has moved closer to her mother’s facility and visits her as often as she can. It was challenging to learn to trust the care team at the facility, she said, but they have managed to communicate well and build relationships. This caregiving journey has required her to act in many different roles, said Denlinger: as a daughter, a doctor, an aunt, a sister, an executive, a significant other, the medical interpreter, the care coordinator, the patient navigator, the personal care aide, the security blanket, the familiar person, the comforter, the advocate, the communicator, the power of attorney, the business manager, the nutritionist, the physical and occupational therapist, the loved one, the mental health counselor, and many others. Denlinger noted that her caregiving responsibilities impacted not just her professional life but also her personal life; she had little time for a social or dating life. As a single person with no children, Denlinger felt the need to maintain her career and her financial independence.

Denlinger identified several things that made it possible for her to study and work while also caring for her family: access to elder care coordination and navigation, access to mental health support, a supportive work environment, access to nearby medical care, insider information as a physician, good health insurance and long-term care insurance, and a village of paid and unpaid support.

Paid Family Medical Leave

One way to support working caregivers, said Shawn Phetteplace, Main Street Alliance, is through paid family medical leave. Paid leave has been implemented in some states through tax credits, said Phetteplace, but this model has drawbacks. There are already two federal tax credits for paid leave and child care, he said, but 97 percent of the tax benefits go to businesses with more than $25 million in revenue. The businesses that can already afford to provide paid leave are the ones that receive the tax benefits. Phetteplace argued that these tax credits have a net negative impact because small businesses that can’t access the credits are at a competitive disadvantage in hiring compared to larger businesses that can. What is needed instead, he said, is a public social insurance-based paid leave policy, similar to one passed recently in Minnesota. The law provides 12 weeks of paid family medical leave to employees who are taking care of a loved one, dealing with their own illness, or have been victims of domestic abuse. The benefit is paid via a 0.88 percent payroll tax that is split in equal shares between employer and employee; small employers pay less than larger employers. Phetteplace emphasized that regardless of what the law is, people have to take leave from work in order to deal with medical emergencies. Implementing paid family medical leave allows them to take this leave while getting paid, which lowers the caregiver’s stress and increases the company’s productivity and long-term relationships with employees. While 12 weeks is not enough for many longer-term caregiving situations, it can provide an on-ramp that allows families to determine what is needed and make appropriate arrangements. There is growing momentum on the state level around paid family medical leave, said Phetteplace, with pending bills in multiple states, and some states passing paid leave policies for state employees. Passing these policies requires robust, broad coalitions of stakeholders with active constituencies who are ready to show up and advocate, he said. The time may not be right in certain states or at the federal level, but building up coalitions and readying constituents will ensure that they are ready when the policy opportunity presents itself.

An Employer-Focused Initiative

The caregiving system in the United States was not poorly designed, said Karen Kavanaugh, Tufts Medical Center, Working While Caring. Rather, it wasn’t designed at all. Changing the system and outcomes for caregivers will require new interventions and strategies at multiple levels across health, social, and economic domains. The Working While Caring initiative seeks to make changes by raising employer awareness of the importance of caregiving, by improving the evidence on effective supports, and by educating and engaging employers on the broader context of care. Kavanaugh explained that while employers can provide supports for their employees, they cannot mitigate all of the impacts of a fragmented and dysfunctional caregiving system. However, working together, employers can use their leverage and political capital to change the system. Working While Caring focuses specifically on small and mid-sized employers in industry sectors where workflow and operations cannot be done remotely, such as hospitality, retail, health care, and manufacturing. These industries employ half of the U.S. workforce but generally do not have the same resources or capacity as larger employers. Further, said Kavanaugh, the resources that exist for supporting employee caregivers—such as paid leave or flexible scheduling—often do not align with their work operations and needs. Employers are more open to changing the structure and culture of work when they work together with similar employers to define the issues and design interventions to meet their specific needs, she said. She told participants about a project in Michigan that brought together eight employers to identify ways to support their employee caregivers. These employers acknowledged the importance of caregiving and the reality that many caregivers want to maintain both their role as employee and as caregiver. They identified challenges, including stigma attached to caregiving, a lack of awareness about existing benefits and accommodations, and the fact that stresses at work and at home can spill over into each other. Based on their conversations, they considered what interventions could be designed to support caregivers and “move the needle, rather than just check a box.” The employers decided to take on two issues: the difficulties that employees have in finding assistance with caregiving, and the psychological stress and strain associated with being a working caregiver. They are about halfway through the design process, said Kavanaugh, and are thinking about solutions such as making care navigators available to employees and training managers on issues of caregiving. The hope, she said, is that through this process, employers will gain a granular understanding of the huge gaps in the system and focus this knowledge and understanding to help to change local, state, and federal policies when the timing is right.

YOUNG CAREGIVERS

In the fifth session, speakers described the unique needs of young caregivers (children, adolescents, young adults) and opportunities to extend support to this population. There are an unknown number of young caregivers in the United States, said Sharon Hamill, Executive Director for the California State University Shiley Haynes Institute for Palliative Care. The current estimate of 5.4 million young caregivers does not include the children who have already lost parents, children who are living with parents with substance abuse issues, children who hide their caregiving for fear that they will be removed from their homes, and countless other young people who are taking care of their families (AARP and National Alliance for Caregiving, 2020). Some have called these caregivers the “hidden generation,” said Hamill, because there is so little awareness about these individuals and their lives.

Feylyn Lewis, Vanderbilt University School of Nursing, shared her story. When she was 11 years old, her mother became unable to walk after a surgery for degenerative disc disease. Her brother had been in college but had to drop out and get a job to pay the bills. Lewis became her mother’s caregiver, helping her with showering, bathing, medications, wound care, and other needs. She said she felt “isolated, scared, and alone” and did not know anyone else her age who played this role in their family. Years later, when Lewis was studying for her master’s in counseling, she realized that there were other young people like her out there, and researchers were doing work in this area. She joined them, conducting qualitative interviews with young caregivers in the United States and the United Kingdom. Regardless of the questions she asked, said Lewis, every caregiver circled back to their mental health; many reported depression, anxiety, and thoughts of self-harm. In another research project, Lewis and her

colleagues sent a survey to 15,000 adolescent caregivers in Europe. Over half (54 percent) reported thoughts of suicide related to caregiving, and a smaller percentage reported thoughts of harm to the care recipient. Lewis said that these results should be seen as a “clarion call” to practitioners, scholars, and researchers that young caregivers need more support. Based on Lewis’ personal experiences and professional research abroad, she offered several key takeaways. In the United Kingdom, she said, support for youth caregivers is seen as part of the broader movements for human rights, children’s rights, and workers’ rights. Support and programming are built into systems, rather than one-off initiatives. The United Kingdom has summer camps for young caregivers that give them the opportunity for free time and leisure with peers in similar circumstances. In England, every school has a Young Carers Champion, who is trained and tasked with supporting young caregivers and connecting them with services. When students apply for university, the application includes a question about caregiving; this allows for caregivers to be identified and connected with services as they transition to university. Lewis suggested that this could be done in the United States through the Common Application. The United Kingdom gives caregivers a weekly allowance as compensation for their work, and caregivers 16 and older are eligible for these payments. This is “very, very different” from the U.S. landscape, said Lewis. She closed by drawing attention to marginalized youth caregivers—those who are unhoused, those who are migrants, those who care for their siblings, and those who care for people with a stigmatized condition such as substance abuse. These hidden caregivers, she said, deserve recognition and the support and programming that is available to other young caregivers.

Melinda S. Kavanaugh, University of Wisconsin, Milwaukee, talked with workshop participants about her research with children caring for a person with complex neurological conditions (e.g., Alzheimer’s). One thing that is “abundantly clear,” said Kavanaugh, is that health care providers “don’t know anything about young carers.” Providers generally don’t see young caregivers in the clinic, and it may not occur to them to ask whether a young person is involved in caregiving. Young caregivers are “doubly hidden”—hidden from society and hidden from health care. There is a need to educate health care providers about these caregivers so they can get the support and resources they need, said Kavanaugh. Her research has also found that young caregivers often have limited knowledge about the illness or injury and rarely have access to care education, skills, or support. These are children who assist with daily needs and manage medications and complex medical devices, and they are doing so without guidance or instruction, she said. The impact of caregiving on young people is significant; they experience social isolation, fragmented sleep, and worry, all of which may affect their academic performance. These children are unlikely to talk to their friends and classmates about what is going on at home, she said, so they need programs to connect them with peers who understand. Kavanaugh shared details of programs she and her colleagues have developed to support young caregivers. In the YCARE program, children and youth caregivers go through a day-long modular program, with each module led by a different health care professional trained in the YCare model. The modules include topics such as assisting patients with gait belts or transfer boards, how to feed a patient with swallowing issues, and condition-specific education. This program has been used and tested across multiple populations, including caregivers of patients with Alzheimer’s, amyotrophic lateral sclerosis (ALS), and autism; Latino families; and caregivers in the military community. The YCare program has trained more than 120 healthcare providers about engaging with youth caregivers; one provider stated that the program helped them have difficult conversations with their patients and reminded them to think about young caregiver needs. Kavanaugh and her colleagues have also developed books and films to educate young caregivers about specific conditions and about caregiving in general. The series is targeted at many diverse populations, and the formats range from graphic novels to activity books to animated short films. These resources, said Kavanaugh, can help young caregivers feel more informed, more prepared to care for their family member, and less alone.

Stephanie Fitzgerald, Lorenzo’s House, Chicago, told participants about Lorenzo’s House, which has the goal of empowering sons, daughters, and families affected

by younger-onset dementia. Lorenzo’s House serves families in 50 states and 15 countries, and the program includes three primary components: matching carers one-to-one with peers who understand, creating safe virtual spaces to share stories and find community, and hosting a worldwide virtual youth summit designed to educate and empower young people. Fitzgerald said that young people with a family member with younger-onset dementia carry stories that only they understand, and they need each other. The match program gives them the opportunity to connect through a single conversation or an extended relationship. There are also programs available for those whose parent has died, said Fitzgerald, which can help young people keep memories alive and find kinship with others. The virtual youth summit offers sessions in topics such as mindfulness, collective art experience, genetics and dementia, “ask the neurologist,” healthy expressions of grief and loss, and more. Fitzgerald said that today’s young caregivers are tomorrow’s advocates, neurologists, policy makers, and nurses, and Lorenzo’s House aims to partner with these individuals to help them be the “generation that meets dementia without shame, silence or invisibility.”

PALLIATIVE CARE PRINCIPLES AND PRACTICES FOR FAMILY CAREGIVING

Palliative care is specialized care for people with serious illness and their loved ones, said Jori Bogetz, Seattle Children’s Hospital. Palliative care focuses on quality of life, communication, symptom management, and aligning care with families’ goals. Palliative care is not only end-of-life care. For example, in pediatrics, about 70 percent of children on palliative care are alive a year later. Palliative care is focused on helping people live the life they want, for as long as they live. This focus on living the best life possible, said Hamill, applies to both patients and their families and caregivers. In the sixth workshop session, panelists spoke about current and potential roles for palliative care in supporting individuals with a serious illness or lifelong, complex disability and their caregivers. The panel featured a wide variety of roles and disciplines—palliative care is transdisciplinary by nature, and providers occasionally must step into each other’s shoes to support the patient and family, said Hamill.

Lived Experience Perspectives

Sarah McCarthy, Boston Children’s Hospital, was a caregiver to her daughter Molly, who was diagnosed with cancer at age three and died at age five. McCarthy prefaced her story by acknowledging her own privilege—she said that her identity as a white woman who worked in the health care system and had good health insurance impacted her experiences and the way the health care system treated her and her daughter. Molly was diagnosed in March 2020, just as the COVID-19 pandemic was hitting the United States. She was diagnosed with both leukemia and neuroblastoma, a very rare combination of pediatric cancers. There is no protocol for this combination, said McCarthy, so pediatric oncologists from around the country worked together to build a treatment protocol, and treatment started seven days after diagnosis. Optimism about her survival was poor. Despite McCarthy herself being a member of the pediatric palliative care team, she had to push repeatedly to get a palliative care consult for Molly. Molly made it through 18 months of intensive treatment, including chemotherapy, surgeries, a bone marrow transplant, and experimental therapies. After she finished therapy, she was enrolled in a study on preventing the relapse of neuroblastoma. As part of the study, a bone marrow biopsy was conducted, and it was found that she had a new cancer caused by the previous treatment. Her second round of cancer treatment “went well until it didn’t,” said McCarthy. After about 60 days in the pediatric ICU, getting “absolutely incredible care from everybody,” Molly died in June 2022. McCarthy emphasized that Molly’s medical history is a very small part of Molly. She was a girl who loved tutus and colorful clothing, her twin sister Emma, and people. McCarthy noted that although she had worked for years in pediatric oncology and thought she knew what families were going through, she realized with Molly’s illness that she “really had no idea.” She shared some of the things she learned from this experience. First, parenting a sick child is incredibly hard. McCarthy said that she was “surprised” and “aghast” that she had to continue to function after receiving Molly’s diagnosis. Taking care of her own needs while parenting Molly was a huge challenge, and the hospital environment did not make it any easier. Another surprise was that despite what she had

previously told families, her level of distress never came down; rather, she learned to suppress it and function while in distress. McCarthy said she was also surprised at the level of care she was expected to provide at home. Molly required twenty different medications through her G-tube, three hours of IV medication, and tube feeding. Medications had to be timed precisely to ensure that they worked and didn’t make Molly sick. Molly’s parents were delivering care about 20 hours a day, said McCarthy, which worked until there was any deviation from the schedule. If a clinic appointment ran late, or the pump stopped functioning, the schedule was thrown off and medications were missed or late. McCarthy noted that this was incredibly challenging, even as a parent with experience in health care and plenty of privilege; if she wasn’t able to do it correctly, “what are we asking other people to do?”

Based on the family’s experiences with palliative care, McCarthy said one of the best aspects is the person-centered and family-centered focus, with time built into the consult to get to know the patient and family. She recalled that Molly’s palliative care team danced and sang along to Frozen songs while Molly was in treatment, and at the end of her life, they took on the burdens of care so that McCarthy could “just be her mom.” One of the challenges in palliative care, however, is a lack of continuation of care and support once a patient has died. McCarthy said she was “completely unprepared” for bereavement, and nearly all services and supports stopped after Molly’s death. In addition, working parents may have to go back to work following the death; the Family and Medical Leave Act provides leave when a family member is sick—but not when they die. Only five states have instituted bereavement leave policies, and there is no bereavement leave protection on the federal level. The day before Molly’s funeral, McCarthy’s husband received a call from work, letting him know that he had used up his five days of bereavement leave. A lack of attention to bereavement is a major problem, said McCarthy; bereavement should be viewed as part of the care continuum. There is an assumption in health care that bereaved families will be taken care of by someone else, she said, but “nobody else is doing it.” McCarthy urged stakeholders to put families and patients at the center of everything they do, from research to advocacy. While every caregiver’s experience is different, their stories should be the foundation from which policies and practices are created, she said.

Lisa Gables, American Academy of Physician Associates, shared personal stories about caregiving for her parents in a rural setting. Before her parents needed care, said Gables, she had conversations with them and their rural neighbors about how and where they would like to live their final years. She even started a company to build universal design, one-story homes on smaller plots of land, in order to give elderly rural people an option that worked for them. However, her parents chose instead to move to a 900-acre farm that was three miles down a dirt road, with only about 1,200 people in the community. Her father began experiencing health issues around age 75, including surgeries, diabetes, congestive heart failure, and chronic kidney disease. The closest hospital was 75 miles away, and Gables’ mother began driving him back and forth for appointments. Eventually, after her father’s health problems escalated, her mother had to learn how to do dialysis in the home. With two 85-year-old parents, one a caregiver for the other, Gables looked for additional help but found none. Later that year, her mother fell and hit her head; she initially tried to ignore it because of her caregiving responsibilities but soon was hospitalized. While her mother was in the hospital, Gables became the primary caretaker for her father, now on dialysis and cancer treatment. After a stint in a nursing facility, Gables’ mother came back home, and both parents needed in-home care. Gables said she was surprised that she could not find care when she needed it, despite knowing where to look. She resorted to Face-book to find a caregiver and finally found a person who lived an hour-and-a-half away. It was difficult for her parents to transition to having someone in their home after 50 years on their own, she said. When her father got sicker, she called in hospice care, and he died a week later. These experiences, said Gables, taught her that life doesn’t go according to plans, and it is necessary to adapt on the fly.

Palliative Care Practitioner Perspectives

A range of palliative care providers—a chaplain, psychologist, pharmacist, and nurse—and researchers gave their

perspectives on family caregiving. The provider perspectives represented some, but not all, of the multidisciplinary experts involved in palliative care.

Chaplaincy

Spiritual beliefs give many patients and their caregivers the resolve they need to work through the physical and emotional rigors of a serious illness journey, said John Tastad, Sharp HealthCare. Caregivers often experience significant spiritual needs throughout their journey, and unaddressed needs or spiritual distress can manifest as hopelessness, anxiety, or isolation. In addition, caregivers often seek meaning in their experience and may rely on spiritual or religious practices to cope with the challenges of their journey. As a chaplain, Tastad said that he is part of an interdisciplinary team for community-based palliative care and hospice care. When he visits patients in their home, he also visits with their caregivers and helps them process their experiences and challenges. Tastad said that the role of religion, spirituality, and faith should not be overlooked or stereotyped but instead seen by healthcare providers as a potential opportunity for improved outcomes. The clinical practice guidelines from the National Coalition for Hospice and Palliative Care highlight the importance of addressing spiritual, religious and existential needs as part of a holistic approach to care, said Tastad. This includes supporting caregivers in navigating the spiritual and existential challenges that accompany the role. Assessment of spiritual needs is a “team sport,” said Tastad. A trained spiritual care provider, such as a chaplain, should be part of the interdisciplinary palliative care team, said Tastad, and other members of the team should feel free to have conversations and ask patients and caregivers about their spiritual needs and what gives them strength in difficult times. Spiritual care providers can create a safe place for reflection, allowing caregivers to express their concerns, fears, and hopes, without judgment. Tastad urged those who want to support caregivers to integrate spiritual, religious, and existential care that honors the individuality of caregivers, nurtures a deeper sense of connection, fosters resilience, and helps caregivers to explore meaning and encounter peace along their path.

Psychology

Having observed her elderly parents take care of each other, Ranak Trivedi, Stanford University, said that caregiving is often “just two people taking care of each other.” As a researcher, Trivedi studies the caregiving dyad and the mental health aspects of caregiving. Caregivers are likely to have a burden that is commensurate with how much care they provide, the intensity of care, the hours of care, and the length of care over time. However, said Trivedi, there is a synergy and reciprocity in the patient–caregiver dyad, and these dyads usually predate the diagnosis of a serious illness (e.g., husband and wife). The relationship between the patient and caregiver is complex and reaches far beyond the confines of health care. If this relationship can be strengthened, she said, it can be easier for people to manage their health together. One recent project of Trivedi’s focused on addressing the patient’s stress and the caregiver’s stress, as well as mitigating the stress in the interpersonal relationship. The idea, she said, is that by alleviating stress on both the individuals and the relationship, both people will experience improved well-being and health outcomes. Trivedi noted that the mental health burdens of caregiving are not universal; racial and ethnic minority caregivers in the United States tend to experience less burden and more joy in their roles. However, most programs and statistics do not acknowledge this cultural difference. Trivedi and her colleagues are conducting a project with South Asian families managing breast cancer. In this community, stress, social isolation, and loneliness are big issues, due to stigma around both cancer and reproductive organs. Unlike with other health conditions, a diagnosis of breast cancer does not get shared widely, and then the community does not show up to support the family. Trivedi and her colleagues are in the process of working with the community to build interventions that would be most helpful. Another group with unique needs, she said, is long-distance caregivers. About 5 million caregivers in the United States live more than an hour away from their loved one; they tend to have higher out-of-pocket costs and more episodes of intense caregiving. Caregivers are not a homogenous group, said Trivedi, and it is critical to identify and acknowledge the unique experiences and needs of caregivers and care recipients. Clinical psychologists can be

an essential part of this work to understand caregivers’ needs and give them appropriate support.

Pharmacy

Jennifer Ku, Providence Health, is a pharmacist in a transdisciplinary palliative care team. Ku noted that medications are seen differently by different members of the care team. Physicians may see them as an easy tool to fix a problem—write a prescription and follow up to see if it worked. Caregivers, on the other hand, can see medications as a “ball and chain” that weigh them down. Ku said that she seeks to lighten the load for caregivers. One of the main challenges she observes is difficulty getting medications. Many Americans live in pharmacy deserts, with little to no access to pharmacies. Even with nearby pharmacies, people may not be able to get the specific medication that their loved one needs. Ku told the story of Emma, a caregiver who got in touch with Ku when she was desperate to find a refill of pain medication for her husband. Ku contacted more than 25 different pharmacies looking for medications, ran test claims against insurance to see what would be covered, and got cost estimates and coupons. Ku called Emma with her options and by the end of the day, her husband had the medicine he needed. The next day, Ku contacted other patients on the same pain medications to proactively work with them on getting access. In addition to the logistical and financial burdens of medications, caregivers also face the physical and mental burdens of being responsible for giving medications. Medication stewardship by a pharmacist can make a big difference for these caregivers, said Ku. For example, a dementia patient, Louis, was hospitalized because he was seeing and hearing things and punching people. His caregiver daughter, Mary, told Ku that he had 20 different medications that she was responsible for giving him at all hours of the day and night. Ku and her colleagues on the palliative care team looked at the medications and stopped some to discover what worked and what caused side effects. During this time, said Ku, the chaplain and social worker were helpful in giving emotional support to Louis and Mary and connecting them with resources. With a pared down medication list, Louis is doing better, and Ku hopes that Mary will be better able to sleep through the night instead of waking to administer medication. “The thing about medications,” said Ku, “is that they also come with a lot more burdens” than what clinicians or outside observers can see. Being a palliative care pharmacist means asking questions that others don’t ask and looking at a care plan to ensure it is appropriate and acceptable for both the patient and their caregiver. Although few palliative care pharmacists exist, said Ku, they provide critical support around the unseen challenges that come with medications in the U.S. health care system.

Research

Researchers have not always done a good job of listening to communities and sharing findings back to those communities, said Abraham Brody, New York University Rory Meyers College of Nursing. This is a cycle that needs to be broken, he said, and caregivers and those they care for need to be part of the conversations around research from the outset. There are disconnects between the health care system, researchers, and caregivers that make it challenging to conduct research that will advance the needs of individuals and change policy and practice, and these disconnects are even greater in underserved communities. One way to bridge the disconnect, said Brody, is for researchers to partner with community organizations to facilitate connections between researchers and caregivers. Brody spoke about his research that focuses on supporting clinical teams to support caregivers through his Aliviado Dementia Care program and mobile health programs including Tina Sadarangani’s Care-Mobi which leverages technology to empower caregivers through improved communication, symptom tracking, and educational resources. Brody emphasized, however, that these tools work best in a high-functioning health care system. To support caregivers, researchers and other engaged partners must meet caregivers where they are and not rely on the fragmented health care system, he concluded.

Nursing

Lynn Reinke, University of Utah College on Nursing, spoke about an initiative that she and her colleagues developed, called “Huntsman at Home.” Established in 2018, the project was one of the first in the country to provide acute cancer care at home, with the goal of providing person-centered supportive and palliative care when and where patients and families need it most. An

interdisciplinary team of palliative care practitioners is available to go into the home 12 hours a day, 7 days a week. In addition, a 24/7 telephone hotline is available for caregivers and patients, which caregivers have described as a “lifesaver.” Researchers looked at outcomes for patients enrolled in Huntsman at Home and compared them with outcomes for patients receiving standard care at the Huntsman Cancer Institute. After 30 days in the program, at-home patients had 55 percent fewer hospitalizations, 45 percent fewer emergency department visits, shorter hospital stays, and 47 percent lower health care costs. These outcomes, said Reinke, would not be possible without the active involvement of family caregivers. She recalled that a Huntsman at Home nurse observed that many family caregivers are nervous about certain medications or procedures. This nurse made a point of connecting with caregivers and helping them learn and become more comfortable with caregiving. Reinke emphasized, however, that this kind of individualized attention is not common in care scenarios, due to workforce shortages and a lack of resources. There is a need to develop and conduct a standardized approach for assessing family caregiver needs and offering support. Huntsman at Home is currently testing a pilot project with this goal, she said. Nurses assess caregiver burden using a validated tool called CSNAT and the team uses the results of this assessment to develop a tailored caregiver plan and refer the caregiver to support resources. Measured outcomes will include health care utilization of both patient and caregiver, caregiver feedback, and uptake of support resources. The hope for this program, said Reinke, is that it will demonstrate how every member of the team can engage with caregivers in a meaningful, supportive way, and how this can improve the quality of care and quality of life for caregivers and patients.

IMPROVING THE FAMILY CAREGIVING EXPERIENCE

In the final session of the workshop, planning committee members reflected on the workshop presentations and

discussions and highlighted potential opportunities to improve the caregiving experience (Box 2).

Choula observed that workshop discussions provided painfully clear examples of gaps in care, feelings of invisibility and fear, and unimaginable expectations put upon caregivers. Discussions also highlighted the critical need for systemic changes to better support family caregivers, including improved access to resources, clearer communication channels, recognition of family caregivers as an integral part of the care team, and more comprehensive training for health care professionals to understand and address the unique needs of caregivers. Choula offered her suggestions for next steps in three areas: policy, research, and health care.

• Policy: Develop and implement policies that provide financial support, respite care, and comprehensive training programs for family caregivers; shape policies around the lived experiences of those whom the policies are meant to support.
• Research: Continue to explore multifaceted experiences of family caregivers through the inclusion of their lived experience; identify gaps in support and develop evidence-based and evidence-informed interventions that can improve quality of life for caregivers and those they care for.
• Health care: Engage with family caregivers as partners in care and offer them the support and resources they need; use payment models that

currently exist (e.g., Medicare codes) to provide support to caregivers; strive to better understand the challenges caregivers face and work collaboratively to ensure that their voices are heard.

In summary, Choula noted, “Let us carry with us the stories and lessons shared by this panel and caregivers on other panels during this workshop. Let us advocate for policies that recognize and support the vital role of family caregivers, and let us continue to foster a community where caregivers feel seen, heard, and valued.”

REFERENCES

AARP and National Alliance for Caregiving. 2020. Caregiving in the United States: Research report. https://www.aarp.org/pri/topics/ltss/family-caregiving/caregiving-in-the-united-states/ (accessed July 28, 2025).

AARP and National Alliance for Caregiving. 2025. Caregiving in the US 2025: Research report. https://www.aarp.org/pri/topics/ltss/family-caregiving/caregiving-in-the-us-2025/ (accessed July 28, 2025).

Bestsennyy, O., M. Chmielewski, A. Koffel, and A. Shah. 2022. From facility to home: How healthcare could shift by 2025. McKinsey & Co. https://www.mckinsey.com/industries/healthcare/our-insights/from-facility-to-home-how-healthcare-could-shift-by-2025 (accessed July 28, 2025).

Brown, R., B. L. Carlson, S. Dale, L. Foster, B. Phillips, and J. Schore. 2007. Cash & counseling: Improving the lives of Medicaid beneficiaries who need personal care or home and community-based services. Mathematica Policy Research, Inc. https://www.policyarchive.org/handle/10207/21353

Feudtner, C., T. I. Kang, K. R. Hexern, S. J. Friedrichsdorf, K. Osenga, H. Siden, S. Friebert, R. M. Hays, V. Dussel, and J. Wolfe. 2011. Pediatric palliative care patients: A prospective multicenter cohort study. Pediatrics 127(6):1095–1101.

DISCLAIMER This Proceedings of a Workshop—in Brief was prepared by Rebecca English and Erin Hammers Forstag as a factual summary of what occurred at the workshop. The statements made are those of the rapporteurs or individual workshop participants and do not necessarily represent the views of all workshop participants; the planning committee; or the National Academies of Sciences, Engineering, and Medicine.

PLANNING COMMITTEE Peggy Maguire (Chair), Cambia Health Foundation; Alison N. Barkoff, George Washington University Milken Institute School of Public Health; Jori Bogetz, University of Washington School of Medicine and Seattle Children’s Hospital; Rita B. Choula, AARP Public Policy Institute; Rory Farrand, National Alliance for Care at Home; Jeffery T. Garland, Association of Professional Chaplains; Sharon B. Hamill, California State University Shiley Haynes Institute for Palliative Care; Rebecca A. Kirch, National Patient Advocate Foundation; Kashelle Lockman, Society of Pain and Palliative Care Pharmacists; Jason Resendez, National Alliance for Caregiving; Susan M. Schneider, Oncology Nursing Society. The National Academies’ planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. Responsibility for the final content rests entirely with the rapporteurs and the National Academies.

REVIEWERS To ensure that it meets institutional standards for quality and objectivity, this Proceedings of a Workshop—in Brief was reviewed by Selena Caldera, AARP Public Policy Institute; Danetta E. Sloan, Johns Hopkins Center for Health Disparities Solutions; and Marian Grant, Marian Grant Consulting. Leslie Sim, National Academies of Sciences, Engineering, and Medicine, served as the review coordinator.

SPONSORS This project received core support from the U.S. Centers for Disease Control and Prevention (Contract Number 75D30121D11240). Additional funding for this project was provided by the pooled funds of three activities at the National Academies: the Roundtable on Quality Care for People with Serious Illness¹; the National Cancer Policy Forum²; and the Forum on Aging, Disability, and Independence.³ Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project.

STAFF Rebecca English, Makeda Haughton, Abian Hailu, and Joseph Goodman.

SUGGESTED CITATION National Academies of Sciences, Engineering, and Medicine. 2025. Strategies and Interventions to Strengthen Support for Family Caregivers for Individuals with Serious Illness or Disability: Proceedings of a Workshop—in Brief. Washington, DC: National Academies Press. https://doi.org/10.17226/29237.

For additional information regarding the workshop, visit https://www.nationalacademies.org/our-work/strategies-and-interventions-to-strengthen-support-for-family-caregiving-and-to-alleviate-caregiver-burden-a-workshop.

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Health and Medicine Division Copyright 2025 by the National Academy of Sciences. All rights reserved.