The state of family caregiving in the United States has reached a critical tipping point amid rising demand for end-of-life care and insufficient resources.

Many family caregivers are ill-equipped to navigate the complexities of supporting a loved one with a terminal illness, according to Dr. Arul Thangavel, CEO of the advance care planning company WiserCare. Thangavel is also an attending physician at the University of California, San Francisco (UCSF).

Among the issues is that conversations about the end of life and goals of care are often brought up far too late in a disease trajectory, Thangavel said. This trend leaves families grappling with uncertainty, moral distress, guilt and compounded grief in the decision-making process, he stated.

“There are so many angles to think of in the family caregiving space [and] we have this kind of global problem,” Thangavel told Hospice News. “Over half of caregivers act as health care decision makers. Helping them navigate the available treatments and patient preferences helps them become better caregivers and, more importantly, reduces some of the burden. It’s understanding where the patient’s support is deriving from, the individuals to include in the multistep, longitudinal advance care planning processes that culminate give that peace of mind.”

Imbalanced supply and demand

Roughly 18% of the overall population in the United States is 65 and older, representing about one-in-six individuals nationwide, according to the U.S. Census Bureau. Seniors are the fastest growing population, with the volume of people in this age cohort rising by 13% between 2020 and 2024, the agency reported.

About 10,000 people turn 65 daily across the country daily, a number anticipated to double within the next several decades, AARP reported.

Swelling aging populations are outpacing growth of other age groups, leaving fewer individuals to care for them as they approach the end of life. An estimated 2.3 million family caregivers provide an average of 20 hours of support each week to loved ones nearing the end of life, a Health Affairs study found.

The data show a tremendous family caregiver deficit. These individuals often face an “immense” emotional toll alongside navigating several logistical, physical, practical and psychosocial needs for both themselves and patients, Thangavel said.

Integrating advance care planning across different touchpoints in a patient’s health care journey is a significant part of improving outcomes, he stated. But several barriers are impeding stronger engagement and utilization, including lagging reimbursement for these services and insufficient clinical resources.

“The government already has advance care planning as a benefit for these senior populations, but there are structural issues that impede delivery,” Thangavel said. “It’s allowing social workers to bill independently for these goal-defining services and embedding them into palliative, primary, emergency and specialty care teams. Making the reimbursement more aligned with how conversations actually occur reduces caregiver burden. Oftentimes, it’s being done in palliative care and that implies that the sickest 2% to 5% of our population are being given the ability to voice their care preferences in the system.”

Rising caregiving tensions

The nation’s health care system is heavily reliant on family caregivers to support patients in the home.

One-in-five adults in the United States are caregivers to family members or friends with a chronic health condition, according to a report from the U.S. Centers for Disease Control and Prevention (CDC).

The CDC report found a host of negative associations between caregiving and their declining personal health. These included heavy alcoholic consumption, decreased physical activity and depression, as well as frequent mental and physical distress. Several caregivers also reported an inability to seek health care for themselves or their loved ones due to cost.

“There is not a space carved out in our system for caregivers to speak honestly about what they’re experiencing,” Sonya Dolan, director of operations at Mettle Health, told Hospice News. “We expect them to hold it together, move forward and be responsible for a person who is sick. That leads to loneliness, isolation and very difficult mental spaces.”

Financial strain is among the leading challenges for family caregivers, particularly amid rising macroeconomic pressures that have been building in recent years. The direct costs of caregiving are substantial, and they multiply as lost wages or missed work days get factored in.

Direct caregiving costs hover around nearly $44 billion nationwide, with more than 650,000 individuals losing their jobs to support a loved one, a Guardian report found.

The country is facing a family caregiving crisis amid inflation and rising costs of goods, according to ianacare CEO and Co-Founder Steven Lee. Adding to the financial issues is a lack of respite support and reimbursement, Lee said during a Hospice News ELEVATE podcast

“There isn’t a lot of funding provided to help caregivers take respite breaks,” Lee told Hospice News. “We already have a capacity crisis in the health care system. There’s no shortage of gaps [and] the resources are just really fragmented. Supportive infrastructure … is going to be critical to head off the crisis.”

Hospice providers and families alike have been calling for systemic change at federal levels. But the needle may be headed in the wrong direction in terms of increased funding and support for family caregivers.

Recent clawbacks in federal health care spending may be hard-hitting for lower-income families with seriously and terminally ill loved ones, including last week’s passing of Trump’s “One Big Beautiful Bill.” The bill contained $1 trillion in Medicaid cuts over the next 10 years. The legislative move has the potential to increase financial headwinds for family caregivers and the patients they support.

Family caregivers are eligible to receive compensation for the care they provide through Medicaid, Veteran Affairs benefits and certain state-specific programs. The funding cutbacks could leave families at a financial disadvantage.

Support for families has also dwindled amid evolutions in federal programs, health care departments and infrastructure. The U.S. Department of Health and Human Services (HHS) earlier this year announced sweeping changes, including the dismantling of the Administration for Community Living (ACL). The administration oversaw programs serving older adults and individuals with disabilities.

The recent regulatory moves could have a range of serious consequences for family caregivers, according to Dolan.

“What’s happening in this country at a higher level is signaling that what these caregivers do is not important and should not be paid,” Dolan said. “With [programs] being dismantled that signals that they are not worthy and should do it alone, and that’s incredibly difficult to be without that validation or meaning.”

A greater need to address family caregiver challenges is evident as more health care systems come under increasing financial and operational pressures, Lee said. A number of hospice programs have temporarily or permanently closed in recent years, citing sustainability issues and staffing shortages.

The trend began before federal spending cutbacks were on the horizon and could worsen, leaving urban and rural areas without sufficient clinical resources to keep up with demand, according to Lee. Greater home-based support will be needed as more seniors reach the end of life, with caregivers feeling the brunt of the burden, he added.

“There are large provider groups that have stopped accepting patients because they just don’t have the capacity,” Lee said. “So, a lot of care is going to get pushed into a home. And at home, it’s the caregivers that are having to care for the patient and that burden is moving to the family and not going to get better.”