The United States is at an inflection point.
As our population ages, the demands on our long-term care system are accelerating; however, the system itself has not kept pace.
What we are witnessing is often described as a “caregiving crisis,” but that framing understates the reality. This is not simply about individual responsibility; it is a structural failure in how we finance and deliver care in this country.
Recent data shows that 86 percent of the country’s 63 million family caregivers support someone aged 50 or older, numbers that will undoubtedly increase as the population ages. These caregivers are taking on more complex and intensive responsibilities, facing emotional strain, financial stress, and social isolation. Despite this reality, most receive little guidance, training, or formal help for the essential role they play in keeping loved ones safe in their community.
And the impacts are real.
As Tiffany, a caregiver from rural South Dakota and a participant in The People Say, a research effort to elevate the voices of older adults and caregivers to inform policy, noted: “I’m his daughter, his oldest daughter. My mom passed away a couple years ago. He’s 90, hard hearing, little dementia going on. I went ahead and had him move in with me so I can take care of him. He doesn’t wanna go into a nursing home, and I don’t want to see him go into a nursing home. He has five kids. He’s been a farmer. My job is to take care of him. I can’t go and get a job, but he doesn’t make enough money to pay for everything and hire somebody to come and take care of him….”
What is accurately being described as a “caregiving burden” in the United States is a symptom of a deeper structural weakness in how we care for older adults and people with disabilities. Caregiving is core to the social and economic infrastructure—no less essential than healthcare, transportation, or education—yet it remains largely invisible, propping up a system that would otherwise falter.
Reliable and affordable care support should not be viewed as a luxury when it is a necessity; expecting families to shoulder caregiving alone, without adequate public assistance, places an unreasonable and avoidable burden on them. Public programs should provide dependable support as a norm, but they fall short of what families need to get by.
Many policies have been put forward to “meet caregivers where they are,” focusing on alleviating symptoms like exhaustion, burnout, and information overload. These are valuable and laudable, but without addressing the root cause of why families shoulder so much responsibility themselves, we risk entrenching systemic policy gaps that have contributed to the lack of a stable and publicly financed long-term care system for all Americans.
To help older adults age well in home and community and to support the family caregivers who make that possible, we must move beyond temporary patches and toward comprehensive, systemic reform of how long-term services and supports (LTSS) is paid for in this country.
For decades, US policy has layered piecemeal solutions onto a LTSS financing framework that was never designed to meet the scale or diversity of modern aging needs.
Current approaches designed to help older adults still frame aging through a 1970s lens:
- They don’t factor in the longer lifespans we see today
- They aren’t designed to meet the desire of most people to remain in their homes and communities as they age
- They don’t consider the unique health care needs of diverse older populations.
As a result, people experience fragmented, uncoordinated care and services that sometimes lead to worse health and quality of life. And families are often relied upon to serve as caregivers because of the twin challenges of exorbitantly expensive out-of-pocket in-home care, coupled with a dire shortage of the paid care workers who provide this support.
These gaps are experienced unevenly.
Black and Hispanic older adults who need LTSS are one-and-half times more likely to be without corresponding care support than older white adults, yet are less likely to receive paid help, instead relying heavily on family and friends. These patterns reflect a system shaped by structural inequities from its inception where policy choices have long excluded and undervalued certain communities.
While polling suggests that 88% of older adults aged 50-80 feel that it is important to remain in their homes for as long as possible, a majority have not begun planning for their long-term care needs. For most Americans, comprehensive services to enable individuals to age in place are simply unaffordable. As a result, many older adults and their families struggle to cobble together a patchwork of support and are forced to make difficult choices.
The caregiving burden takes on many different forms. It’s an older adult paying out-of-pocket for part-time home care that costs thousands per month, eventually exhausting savings; a daughter reducing work hours or leaving a job entirely to provide unpaid care; and a son acting as a default care manager, coordinating between a primary care doctor, a specialist, a home care agency, and a Medicaid eligibility worker.
Reggie from Wyoming, underscores the affordability barrier, noting, “If somebody comes in for home care, you have to pay for it… I looked into it for when my wife was recovering from surgery, and it’s just cost prohibitive for our budget.”
Taken from The People Say
As the country’s population ages and care costs continue to rise, the need to address the root causes of the caregiving crisis has never been more urgent.
Medicaid currently offers some support for LTSS. In 2022, 7.2 million individuals relied on Medicaid-funded LTSS, including 6 million who received care through home- and community-based services (HCBS) and 1.5 million who used institutional supports. The program is so popular that more than 600,000 eligible people are currently on waitlists for HCBS. These are individuals who qualify for support, but whose needs are not being met as states lack the capacity and funding.
Even though every state has a Medicaid HCBS program, the majority of older adults aren’t eligible for those services. They make too much to qualify for the public program, but not enough to afford it on their own. NORC at the University of Chicago found that “there will be 16 million middle-income seniors in 2033.” This “forgotten middle,” and their family caregivers, will continue to struggle if we don’t change how we pay for LTSS in the US.
Recent news articles suggest that the cost of in-home care, which is already out-of-reach for many Americans, is rising more than three times faster than inflation. This fact, in addition to recent federal Medicaid cuts, and an ever-expanding caregiver shortage, has left us with a long-term care system that is in a deepening crisis.
Reimagining the system is necessary and possible.
Centering the voices of older adults and family caregivers must be foundational to any meaningful reform. Lived experience should be treated as critical evidence, informing how programs are designed, implemented, and evaluated. Efforts like The People Say show that caregivers and older adults offer clear, consistent insight into where systems fall short and what meaningful support looks like in practice.
Treating these insights as decision-shaping evidence grounds policy in how the system actually operates in people’s lives, sharpening the ability to identify structural gaps and build a more accountable and equitable LTSS system.
Roadmap for Action
2026 presents a timely opportunity for policymakers to reassess and address these care challenges in a significant way. In the last few years, the public’s awareness of caregiver challenges have risen sharply and calls for real change are growing louder. During the 2024 presidential election, candidates from both parties put forward specific policy proposals to support caregivers and bolster in-home care, an unprecedented political development that in 2026, is continuing to drive dialogue and action to move these issues forward at the federal level. Likewise, at the state level, policymakers are advancing programs that help caregivers and their loved ones, such as paid family and medical leave and tax credits to help offset care costs.
Now is the time to leverage and build on this momentum. The good news for policy leaders is that there is no need to start from scratch as there are already well-established roadmaps for action.
Medicaid plays a central role in supporting HCBS, but it is an optional benefit that varies widely by state in scope and is available only to those with the lowest incomes. As a result, access to care depends more on geography and poverty status than on need. Public support for caregiving should be a standard feature of our care infrastructure, not a patchwork safety net that families must fight to access.
Importantly, Medicaid is not the only framework through which Congress can act. The Older Americans Act (OAA), the reauthorization of which was reintroduced in the summer of 2025, offers another critical avenue to strengthen caregiver supports and expand access to home-based services. Taken together, these programs should establish a reliable, nationwide baseline of support, yet today they fall far short of what families need and deserve.
Moreover, the recently released UMass Boston LTSS Financing Compendium highlights the full range of federally proposed LTSS solutions over the past 30 years. This gives policymakers a clearer view of what has been proposed, what has been tried, and how existing ideas can be improved upon to create a more accessible and affordable long-term care system.
Congress can draw from this body of work to advance a cohesive LTSS financing framework that strengthens home-based care infrastructure and stabilizes the direct care workforce.
Beyond the Compendium, a recent Penn LDI analysis brief presents a range of federal policy options, including reforms to Medicaid and Medicare, the creation of a new public insurance program, and strategies to address persistent private long-term care insurance market failures that limit affordable coverage.
What is Needed: Integrating Caregiver Supports into a Comprehensive Financing Framework
Family caregiver supports would function most effectively within a well-designed, publicly financed and affordable LTC system.
A durable system requires several core elements:
- A stable and sufficient financing stream for LTSS across income levels
- A paid, trained, and adequately compensated direct care workforce that can supplement family caregiving
- Guaranteed access to services based on functional need, supported by eligibility pathways that extend beyond poverty thresholds
When these structural components are in place, caregiver supports enhance stability and wellbeing. In their absence, relief remains uneven, and families with fewer resources continue to face elevated risk of financial strain, workforce disruption, and unnecessary institutional placement.
Without question, the rapidly approaching demographic shift presents an opportunity to advance meaningful solutions. We call on policymakers to advance a comprehensive approach to long-term care reform that includes, but does not stop at, family caregiver supports. This approach offers the strongest path toward an affordable, equitable long-term care system for all families across the country.