As nursing homes grapple with a tough economic and labor environment – which has forced closures and created access issues – patient and nursing home advocates underscored the emotional toll of care, calling upon the federal and state governments to do more to address new and emerging generational challenges to care.
Anne Tumlinson, founder of Daughterhood and CEO of ATI Advisory, a policy research and consulting group, said that the elder care system in the United States is underfunded, leading to insufficient choices for those who can afford care. Even families with financial resources struggle to find quality care, highlighting the systemic challenges embedded in the current structure.
Private markets alone cannot address the complexities of elder care, said Tumlinson, who was speaking at a webinar held to discuss the KFF Health News and New York Times joint series, “Dying Broke,” an investigation into America’s long-term care crisis. She advocated for government intervention, citing the need for a new public program that provides financial support for elder care.
Jordan Rau, a senior correspondent at KFF Health News, who authored articles for the series, said that even he was surprised by the diversity of thought on just who should fund care for the country’s elderly.
‘Social media is so brittle and angry and blaming,” he said. “And I was really amazed at how little sense of entitlement people had… everyone really shouldered this as their responsibility.”
Rau said the issue of care for the older population is not an isolated problem but a shared struggle that demands a collective response. The emotional toll, financial burden, and isolation experienced by caregivers emerged as common threads during his reporting, uniting individuals facing diverse caregiving situations.
Reed Abelson, co-author of “Dying Broke,” drew attention to the escalating costs associated with assisted living and home health care. Abelson said that even with the increased costs, families are reluctant to cancel long-term care insurance plans, hoping to avert unforeseen circumstances.
“Finances are just so difficult for people,” Abelson said. “I think many people really didn’t have a grasp even as they were going through it, how they were going to pay for it, or what this would mean to them. And so I think there was some denial and I think culturally people don’t like to talk about money.”
Panelists also discussed the lost income experienced by caregivers, particularly those in the “sandwich generation.”
Robert Ingenito shared his experience of navigating part-time work while caring for his 93-year-old father, highlighting the broader implications of lost income among caregivers.
“This level of care was becoming unsustainable for me,” he said. “I wasn’t getting any sleep. I couldn’t leave him home alone. You know, we had a home health aide coming in during that month or so. But that was only during the day and it was only during weekdays. I couldn’t go on outings with my wife and my daughter.”
Public advocacy and awareness
Tumlinson also brought attention to the critical role of public advocacy in driving change. She urged caregivers and families to amplify their voices, emphasizing that political will could be mobilized through increased awareness about the long-term care crisis.
Tumlinson emphasized the universality of emotions among family caregivers, regardless of the specifics of their situations. Overwhelm, guilt, and loneliness are pervasive conditions that resonate across diverse caregiving scenarios, she said. These emotional challenges, Tumlinson noted, underscore the need for a collective understanding of the caregiving experience.
Tumlinson said that while some families may have the means to afford assisted living or long-term care insurance, a significant portion face dire financial constraints.
“They’re not living in assisted living or nursing homes because of the cost,” she said. “Because we do not have a financing system in this country to pay for it.”
Tumlinson continued that a substantial number of older adults, often living below the poverty line, rely entirely on family caregivers due to the absence of adequate financial support.
The need for government solutions
While acknowledging the challenges at the federal level, Tumlinson expressed optimism about initiatives at the state level. Some states, such as Washington, are taking steps to fund public insurance for residents, providing a potential model for addressing the financial gaps in elder care.
“Washington state actually funds public insurance for its residents,” she said. “So state residents are all paying taxes into an insurance pool so that when they need care, they actually get funding to pay for care. There’s some qualifiers: it’s $36,500 total, which you know, won’t go that far.”
Tumlinson also noted the importance of expanding Medicaid and experimenting with innovative approaches at the state level to bridge the existing gaps in care.
“We are going to have to collectively solve it and states are going to be part of the solution. Hospitals and health systems are going to be part of the solution … while we wait for Congress, hopefully, to act on something more universal and national.”
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