'More pressure on families.' Nearly half of US states are on the brink of a caregiving emergency

'More pressure on families.' Nearly half of US states are on the brink of a caregiving emergency
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Who is on Medicaid? The popular program could be on the chopping block
72 million people in the U.S. are enrolled in Medicaid, the federal and state health insurance program for those who are disabled or low income.
Aisha Adkins, 40, barely had a chance to breathe between her mother's death and her father's vascular dementia diagnosis, both of which happened in 2023.
Adkins, of Georgia, cared for her mother for a decade after her mom was diagnosed with frontotemporal degeneration dementia. At first, caring for her mom meant reminding her to turn off the stove after cooking and assisting with the laundry. Later, Adkins said, it meant bathing her, dressing her and feeding her.
Being a full-time family caregiver also meant putting some of her own needs to the side. She went several years without a job and without health insurance while caring for her mom. And Adkins said she's found it difficult to maintain friendships and other relationships while caring for her parents. Now, her father is her top priority.
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'I would love to be married someday," Adkins said. "I don't know if that's something that will happen for me, just because caregiving is a full-time responsibility and not everyone has the capacity to understand what caregiving means, what it looks like and the sacrifice that it takes, and that they can't always be your No. 1 priority."
A new study by Columbia University Mailman School of Public Health found nearly half of America's states are on the brink of a caregiving emergency, with the worst conditions being in the South. In the study, sponsored by Otsuka America Pharmaceutical, researchers developed a new scorecard to assess the urgency of local caregiving needs. States' scores are based on measures like the number of long-term care beds available, the number of paid health aids per resident, the percent of people over 65, the number of families paying more than 30% of their income toward housing, the AARP's long-term care rankings and the number of individuals with dementia in the state.
From there, researchers grouped states into four categories: critical, high risk, safe for now and well-supported. Alabama, Arkansas, Florida, Georgia, Louisiana, Nevada, South Carolina and Tennessee are the states deemed critical and in need of immediate action.
'It's no surprise to us that every state has work to do to ensure the caregivers living in their states, along with those who need care, have what they need," said Nicole Jorwic, chief program officer for Caring Across Generations. "Family caregivers are often on the brink of catastrophe due to lack of support systems."
Other research has pointed to worse health outcomes for people in Southern states, including a 2023 Alzheimer's Association study that found higher cases of Alzheimer's disease dementia in east and southeastern regions of the U.S. The Commonwealth Fund's 2023 Scorecard on State Health System Performance ranked states based on several factors including premature death rates and healthcare access and affordability. The lowest-scoring states in that report were Mississippi, West Virginia, Oklahoma, Texas and Arkansas.
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'We're just placing more and more pressure on families to take care of their loved ones," said John McHugh, lead researcher and adjunct assistant professor of health policy and management at Columbia. 'We're asking more and more of individuals without providing any sort of support or compensation, or anything along those lines.'
Jaeron Mickle, public information officer for Nevada's Aging and Disability Services Division, said the division helps unpaid family caregivers by providing financial support through state and federal programs and partnering with advocacy groups like the Nevada Lifespan Respite Care Coalition, which created the Nevada State Plan to Support Family Caregivers in 2022.
"Each year, about $2.5 million is given to community organizations to offer respite care and other services for people over 60. In addition, the state is working on two federal grants under the Lifespan Respite Care Act to raise awareness and improve access to respite care in Nevada," Mickle wrote in an email to USA TODAY.
Southern states have caregiver programming, but Medicaid expansion is crucial, experts say
In South Carolina there are more than 125,000 people living with dementia, according to the state's Alzheimer's Disease Registry.
"Four years ago, we knew to address the rising number of those being diagnosed with dementia and the countless hours of care our caregivers were providing, our agency needed to take a closer look at how to meet these demands," Connie Munn, director of the South Carolina Department of Aging said in an email to USA TODAY.
That's why the department established the Caregiver and Alzheimer's Resource Division, Munn said. The state also established a Family Caregiver Support Program in 2001 that "placed an emphasis on respite" to support family caregivers. In 2022, the state launched a Dementia Care Specialist program aimed at providing education and support to those living with dementia and their family caregivers. The state has plans to expand the program this year, Munn said.
"This program is strategically placed within our communities to allow those with early diagnosis, as well as family members, to have a place to go for resources within their local communities," Munn said.
But South Carolina, like several other states in the South, is one of 10 states that didn't adopt the Medicaid expansion under the Affordable Care Act. Medicaid helps caregivers just as much as it helps patients, said Christina Irving, client services director for the Family Caregiver Alliance.
"Medicaid provides crucial home and community-based services that are vital to family caregivers and the people they care for," Irving said. "These programs help older adults and people with disabilities stay at home and out of institutions, and may even directly compensate family caregivers, especially important for those who had to leave their jobs to provide care."
Jorwic said Medicaid is one of the most important systems for caregivers and its expansion "is a win/win for caregivers and the entire care system.' Caring Across Generations is one of 730 national, state and local organizations backing a letter to members of the House urging them to reject proposed Medicaid cuts in President Donald Trump's pending budget reconciliation package.
The legislation is still far from the finish line. Once it gets through the gantlet of the House, it will have to go through committees and a floor vote in the Senate. Policy details may be tweaked at any point along the way.
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"It's an imperfect program, but the only game in town when it comes to funding long-term care," Jorwic said of Medicaid. "The choice to not expand has a direct impact on the integrity of our systems and the well being of caregivers."
Georgia didn't expand Medicaid, either, and the state also has one of the largest shortages of home health aides in the country, the Columbia report found. Adkins said "it was very difficult to access supports and services, particularly in the beginning," when her mom was first diagnosed.
Her mother had a case worker, Adkins said, but there was so much turnover in the agency that it took years to make any progress in finding help. They were eventually able to secure in-home care, first at 20 hours per week and later at 40 hours per week, toward the end of her mom's life.
Ellen Brown, communications director for the Georgia Department of Human Services, said the state's Division of Aging Services "prioritizes and supports caregivers in a number of ways," including community service providers contracted by the Area Agency on Aging, which connects families with in- and out-of-home respite care and caregiver support groups.
The division also implemented a stress assessment for family caregivers, and there are a dozen dementia care specialists dispersed across the state to provide information and support to caregivers of people living with dementia.
The Division of Aging Services also contracted with the University of North Georgia's Institute for Healthy Aging in 2025 to conduct the Georgia Respite Care Study. The project aims to provide policies, programs, and best practices in other Southeastern states "that could potentially be implemented in Georgia to help serve caregivers more effectively," Brown said.
"The results of the study will help inform future data collection, program initiatives, and funding opportunities to improve and bolster the caregiver infrastructure in Georgia," Brown said.
A spokesperson for the Alabama Department of Senior Services, too, said the department "is taking meaningful, proactive steps to address caregivers' needs, particularly helping caregivers caring for older adults, relative caregivers caring for grandchildren or other relative children, those impacted by dementia, and those impacted by the opioid epidemic." The Alabama CARES program has helped family caregivers since 2000, and the state also has an Area Agency on Aging like the one in Georgia. The state has various other partnerships to support caregivers, including programs that target caregivers for people with Alzheimer's disease and related dementias.
What does the future of care look like? 'I would worry.'
Adkins' experience isn't unique. And in nearly half of the country, McHugh said, any additional budget cuts to the healthcare system "could really push these states over the threshold into a full-blown crisis."
'A lot of it comes down to a much stronger policy environment around aging," he said.
In the absence of state support, Adkins said she and other caregivers rely on each other. She recently launched an Instagram account, Caregivers Of Color Collective, that she hopes will encourage other family caregivers of color and lead them to helpful resources.
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Adkins' father is in the early stages of dementia now. He mostly needs reminders to take his medicine and help finding misplaced keys. But Adkins knows his condition could progress quickly.
Her father doesn't want her to go through the same challenges she did when she cared for her mother, and doesn't want Adkins to care for him full time. But Adkins said she's not sure she's comfortable with the alternative, which would be placing him in a short-staffed nursing home with high turnover.
'I would worry about his safety. I would worry about his ability to be cared for in a way that I would care for him," she said. "And so I wrestle, still, with what the future of care looks like.'
Madeline Mitchell's role covering women and the caregiving economy at USA TODAY is supported by a partnership with Pivotal Ventures and Journalism Funding Partners. Funders do not provide editorial input. Reach Madeline at memitchell@usatoday.com and @maddiemitch_ on X.

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