Health Care | Vox – Read More

You walk into the room and a whole crowd of people is belting out an uneven but spirited version of “Ain’t No Mountain High Enough” by Marvin Gaye and Tammi Terrell. A former lawyer dressed in a Beatles T-shirt taps his knees as if he were a professional drummer. Another guy, long and lanky in a well-pressed suit, closes his eyes and quietly sings the chorus with real feeling: “Ain’t no valley low enough / ain’t no river wide enough / to keep me from gettin’ to you, babe.”

A woman with long silver hair and a knit hat shouts, “This is my favorite song!” 

She said that last time. And the time before. No, this isn’t a dive bar. And no, this woman isn’t in love with every song in the karaoke binder. This is a day program for elders with dementia and Alzheimer’s. And it’s an oasis for so many older people and their families. 

There are over 3,100 programs with about 200,000 people nationally, and they are in constant threat of being shut down at precisely the moment when we need them most — as the largest generation of Americans that ever lived ages into retirement, and their children struggle to care for them while often raising children of their own.

The “sandwich generation” needs help 

By 2030, the entire baby boom generation will be 65 and older — creating an unprecedented need for elder care at a moment when “sandwich generation” caregivers are outnumbered, and often already financially squeezed, including by their younger dependents. Add to that the reality that there is a profound national shortage of professional caregivers to call on.  

Twenty-three million Americans now care for elders, surpassing the 21 million caring for preschool children. That unpaid care is valued at over $600 billion annually, placing tremendous strain on the 63 million family caregivers in America, many of whom are stressed to the point of burn out. According to AARP, half of working caregivers caring for a family member or friend report having to rearrange their work schedule, decrease their hours, or take an unpaid leave in order to meet their caregiving responsibilities. 

Add to this the reality that more people than ever work from home — the latest government statistics put it at about a quarter of us — and it’s increasingly challenging to maintain professionalism on a Zoom call when your elderly dad is popping into the frame to ask when lunch is!  

So how can America meet this inflection point with real, viable solutions? 

One answer is hiding in plain sight: day programs (or what insiders call “community-based adult services” or “adult day centers”). 

These programs, like child care centers, not only make all the other work of our country possible — freeing up adult children and partners to stay in the workforce — but they also offer socialization for our elders and allow for wraparound services, like podiatry, physical therapy, and enrichment like arts and music, all of which are crucial for keeping their quality of life high and their hospital admission low. 

What’s more, day programs are far less costly than the alternatives of home health care and assisted living. According to recent estimates, the median day program costs $100 a day vs. about $200 for assisted living and over $200 for in-home care. And as spending on the elderly is taking up larger and larger chunks of the federal budget, any savings could go a long way toward freeing space for other priorities.

I became interested in adult day centers when I became a caregiver for my own dad, who has early-onset dementia. He and my mom lived with my family — me, my husband, and my two kids, 9 and 12 — for over a year, and it was tumultuous. He would wander out of the house while my mom showered or I was taking a meeting and be found confused and dehydrated miles away. When we tried to bring a professional caregiver in, my mom and I would have to hide in our rooms so he wouldn’t see us; people with dementia often develop shadowing behavior, where they follow their primary caregivers around wherever they go. 

His brief stint at Alzheimer’s Services of the East Bay, a day program in California designed for elders with dementia, was a golden time for our whole family — my burned-out mom could get a nap, I could get my work done, and my kids could have friends over after school without worrying that the noise would cause my dad to become agitated.

But our golden time was short-lived. This program, beloved by so many local families for nearly three decades, was shut down because it couldn’t sustain itself on Medi-Cal reimbursement rates — the states’ Medicaid program — that hadn’t budged since 2009. According to Brian Rutldedge, executive director of the California Association for Adult Day Services, the state gave the organization $76.27 a day for care that costs $250 to provide. Leadership at the program was forced to turn Medicaid-qualifying seniors away, or put themselves in financial ruin; they chose the latter and it eventually bankrupted them. 

A few months later, we drove my dad to a memory care facility where he has lived ever since; an alternative that we are lucky enough to be able to pay for, despite the fact that it is three times what we were paying out-of-pocket for his day program. 

Many of the other families in that program have not been so lucky.

“A year later, my mom still gets up every morning asking when the van will pick her up,” one adult daughter of a former client told me. “This is heartbreaking for me.”

She’s yet to find a long-term alternative solution that can fit their needs and budget. 

What’s holding adult day care centers back

Adult day care centers were originally designed with the kinds of issues facing families like ours in mind. William Zagorski’s parents started Tennessee’s first medical-model day program when he was just 11 years old in 1991 after his grandmother was discharged from a social model program because of her tendency to wander (she had dementia) and the fact that she needed medication assistance. He now runs three centers in his home state and is the chair of the board of the National Adult Day Services Association. 

Day programs, Zagorski says, cost a fraction of more intensive services like skilled nursing facilities and assisted living. They “combat loneliness, and they are far less vulnerable to worker shortages” in an industry where help is chronically in short supply. “They really are the best-kept secret in America,” he said. 

But my own family experience struggling to find care options isn’t unique. And precisely as the silver wave of boomers is cresting, the One Big Beautiful Bill will make it harder for centers to stay open. The bill dramatically reduces state funding and flexibility, which advocates warn will force decision makers into lose-lose decisions, such as which Medicaid services to pull back on. The vast majority of those in day programs depend on public benefits of some kind — whether Medicaid, Veterans Affairs, or Older Americans Act. 

This isn’t the first time these programs have been in jeopardy. During the Great Recession, an economic-driven drop in government funding led states to reduce Medicaid’s reach and impact. In California, where I live, the state proposed eliminating adult day health care entirely as a cost saving measure, even though adult day is unarguably cheaper than the alternatives. Advocacy and lawsuits were the only thing that kept it going. 

There was also a dramatic drop in day programs during the height of the Covid pandemic, which made it dangerous for elders to gather in person. Tia Sauceda, who is now the executive director of the National Adult Day Services Association, ran four day programs in Colorado at that time, and three of the four had to shut down. “We’re back there again, just needing to defend what we have, rather than having the luxury of imagining how we can expand to meet the growing need,” Sauceda said.

The funding formula for these programs also creates additional difficulties for families. An increasing number of elders in the United States fall into what some researchers call the “forgotten middle” — meaning their annual income and accumulated savings are too high for them to qualify for Medicaid and too low for them to afford in-home professional care, day programs, or assisted living. One report estimates that over the next decade, the number of middle-income seniors will almost double — reaching almost 16 million by 2033. 

Families are often forced into an impossible choice — spend down their parents’ hard-earned assets so they can be destitute enough to qualify for Medicaid, or let them hold onto what they’ve earned and go into debt in other ways trying to get them the care they need. One adult daughter I spoke to had to make the heartbreaking decision to sell the home her mother had worked her entire life to buy — a symbol for her of breaking generational hardship after the Great Migration — and plunge her mother back into poverty just so they could get the care she needed as her dementia advanced.

New models of adult care offer hope for future growth 

One of the largest day program operators in the country is called Programs of All-Inclusive Care for the Elderly (PACE). There are currently 198 PACE programs operating in 33 states plus the District of Columbia. Over 90 percent of elders enrolled in PACE are dual eligible for Medicaid and Medicare, which pays for their participation. PACE is the epitome of a one-stop-shop for vulnerable elders — providing medical care, prescriptions, activities, home care, transportation, various kinds of therapies, meals, and even housing navigation. 

But PACE isn’t a panacea. It’s designed for vulnerable elders 55 and over, but not specifically people like my dad and the 7 million other Americans with Alzheimer’s/dementia who need particular kinds of environmental conditions and support with transitions. Its one-stop-shop nature also isn’t for everyone; some elders would like more discretion about their health care providers. 

Perhaps the most powerful solution, certainly for sandwich generation caregivers, is colocated care programs, where child care and elder care happen on the same site, and even intermingle. Studies show that elders with dementia are often supported by the Montessori approach that’s typically associated with children. The emphasis on tactile learning, sense of roles and responsibilities, and collaboration are all excellent for both stages of brain development. But, unfortunately, these kinds of colocated programs are still relatively rare in the United States; by most estimates there are only about 150 total. 

While advocates continue to fight for Medicaid reimbursement rates to be raised, and the pie-in-the-sky dream of Medicare coverage for day programs, all eyes are on Washington state, where the very first public mandatory long-term care insurance program — WaCares — is starting to make its first payouts. The program provides funding for Washingtonians to pay for, among a variety of things, professional care like that provided in adult day centers. If it works, many other states are poised to adopt this model. Nationally, only 4 percent Americans 50 and older have long-term care insurance despite the fact that seven out of 10 Americans will need long-term care at some point. 

Private sector solutions could also make a huge difference. Forward-thinking employers could include elder care as part of their benefits — most significantly, on-site care, or even just investing in local programs, reimbursing employees for the costs associated with sending their aging parents to programs, or at the very lightest touch, care navigation (whereas their employees can count on support finding local resources). Only 7 percent of employers are currently offering subsidies or on-site services for eldercare.  

One bright spot is Medicare’s Guiding and Improved Dementia Experience (GUIDE) program, which officially began in 2024. It will run for eight years. It is a federal effort to support both people with dementia and their caregivers by providing care navigation, a 24/7 support line, caregiver training and education, and most importantly, respite services — short-term relief for caregivers — of up to $2,500 annually. This is the first time that Medicare funds are going directly to ongoing respite care, which is, in a sense, a policy gateway to arguing that adult day programs should be funded more broadly by Medicare dollars rather than Medicaid. 

Advocates are encouraged by these experiments, but they’re still only a start. In the coming years, they’re hoping to protect existing programs, advocate for additional ones, and collect more data to make their case. 

“The economic argument is there, but it’s more than that,” Sauceda, the National Adult Day Services Association executive director, said. “These programs are a life raft in the caregiver space. At the end of the day, we are truly changing lives.”