Nearly 50 million people providing unpaid home care for loved ones with intellectual and developmental disabilities, dementia, and physical disabilities. In a Sept. 6, 2016 photo, Anita Welshans gives her mother, Mary Welshans, a kiss at her mother's home in Hanover Township, Pa. Anita acts as her mother's caregiver. (Katie Roupe/Observer-Reporter via AP)

Jimmie Gaines’ descent into dementia began four years ago when he was 72. A retired draftsman living in the St. Louis suburb of Swansea, Illinois, he and his wife Sandra, who is a year younger, became alarmed. Gaines kept repeating the same question he had just posed to her, and she had already answered. Married for over half a century, Sandra had watched Jimmie’s mother suffer a similar decline, so she took her husband to the neurologist. After administering a battery of tests, the physician diagnosed Jimmie with mild cognitive impairment (MCI)—the initial stage of Alzheimer’s Disease. 

You’ve probably heard about a new class of drugs for MCI. The Food and Drug Administration’s recent approval of the first made front-page news. But the medication, called Leqembi and produced by Eisai, Inc., does nothing to halt the slide of those with dementia. At best, the new drugs slow the decline by a few months, an improvement that may pass FDA muster but one most experts deem clinically insignificant

Month by month, year by year, Gaines’ symptoms grew worse. He couldn’t remember 911, the number to call if there was an emergency, and he was alone when Sandra went shopping. Called “Cookman” by his children and grandchildren because of his culinary skills, Jimmie began putting Styrofoam containers in the microwave despite being repeatedly told not to do so.  

Sandra’s frustration grew, and she began calling her daughter, Catrece Strickland, now 50, who lives nearby, more frequently. “I need you to come help with your father,” the daughter recalls her mother beginning their many conversations. After a long day at work, the certified public accountant would rush to give her mother relief. Occasionally, Catrece recruited one of her teenage children to take grandma shopping. “She gets frustrated by herself,” Catrece said of her mother. “It’s human nature. You can only deal with the same issues for so long.” 

The caregivers in Gaines’ extended family face the same dilemma confronting the 4-5 million American families whose loved ones with dementia live at home. The government provides almost no support. The same can be said for the nearly 50 million people providing unpaid care for loved ones with intellectual and developmental disabilities, physical disabilities, and crippling diseases like cancer, diabetes, heart disease, and other disorders. 

That number, over a fifth of all households, rose 22% between 2015 and 2020, according to a survey conducted every five years by the AARP and the National Alliance for Caregiving. It is expected to soar over the next decade as the population ages and its chronic disease burden rises. 

The burden of providing at-home care takes its toll on caregivers, who often become socially isolated, emotionally depleted, and ignore their own needs while helping loved ones. The share of caregivers reporting their health was only fair or poor rose from 17% to 21% over the latest five-year span. Every expert I spoke with for this story conveyed anecdotes about caregivers who physically collapsed under the strain and died—leaving their loved ones with advanced dementia and any remaining family scrambling to find other care. It happened in my own extended family.  

Washington is slowly inching toward addressing this mounting burden on Americans and the economy, which loses hundreds of billions of dollars a year as caregivers—three-fifths of whom are women—drop out of the workforce or reduce their employment to support family members. In 2017, Congress created an advisory council to prepare a national strategy report for helping family caregivers, and it finally offered its report last year. In April, President Joe Biden followed up by issuing an executive order with 50 recommendations, including ordering the Health and Human Services Department to develop a plan for helping family caregivers provide dementia care. 

This summer, the Centers for Medicare & Medicaid Services (CMS) did what it always does when given a job for which Congress hasn’t authorized payment and isn’t a part of traditional health care: It came up with a pilot project. The Guiding an Improved Dementia Experience (GUIDE) Model, which accepts applications this fall and should launch in July, will provide financial aid to organizations that offer caregivers 24/7 access to a support line as well as education, training, respite relief and help finding support services like adult day care centers in their communities. 

The pilot project is based on programs developed over the past decade by a handful of academic medical centers using grants from the CMS Innovation Center, especially the one developed at the University of California at San Francisco (UCSF), called Care Ecosystem

Each enrolled caregiver in this model program is assigned a “navigator” backed by a team that includes the dementia patient’s treating doctor, a nurse, a pharmacist, and a social worker. They look for ways to simplify medication schedules. (People with dementia often take a dizzying array of medications.) and recommend home safety improvements. (Falls are a major cause of emergency room visits for dementia patients.). They make referrals to local social service agencies. The navigators conduct follow-up telehealth visits at least monthly and are on-call for emergencies. 

“One of the most important things about the model is that it provides support for both the caregiver and the person with dementia,” said Katherine Possin, a professor of neurology at UCSF and director of Care Ecosystem, which has already shown effectiveness and money-saving potential in a randomized clinical trial. “By supporting the caregiver, we improve outcomes for both. It reduces caregiver burden, eases symptoms of depression, and increases their confidence. For the patient, it improves their quality of life [and] results in lower cost for the health care system.” 

About 25 organizations, primarily at universities, have adopted the Care Ecosystem. Only a few community-based non-profits have adopted the model, including Memory Care Home Solutions in St. Louis, where Catrece turned after receiving a referral from her father’s neurologist about 18 months ago. Catrece’s first meetings with her navigator, Aurielle Young, focused on Jimmie’s worsening symptoms. 

“We learned from Aurielle that his brain doesn’t work the way it used to,” Catrece said. “Once he gets something in his head, he can’t get off it. Memory Care taught us strategies to help us move him through it. They taught us phrases to stay away from, like ‘Don’t you remember?’ You have to pull that out of your vocabulary. Dad had an older brother. Instead of talking about funerals and obituaries, we’ll pull out old pictures and ask, ‘Do you remember when Uncle Brady,’ did something? Then he remembers stories and gets into a happy space instead of us reminding him that he’s gone.” 

Young, the navigator, and the Gaines/Strickland family are discussing enrolling Jimmie in an adult daycare program. She doesn’t just give advice. “If I refer to an adult day program, I will call that program to find out if they have a waitlist. We do not refer to resources that we are not familiar with, and we don’t have some sort of relationship.”  

The organizations deploying Care Ecosystem and similar models have so far relied on small government grants and philanthropy. HHS’ Administration for Community Living runs a $26 million grant program to develop or expand dementia-capable home and community-based services. However, that is a minuscule response to a national crisis.  

Memory Care Home Solutions, the St. Louis-based provider, has cobbled a $1.6 million budget to help about 500 families annually. “We have a waiting list of 100 families,” said executive director Jill Cigliana. It costs the group $2,600 a year, she estimates, just to aid one family. “With increased resources, we could easily double our service numbers. That’s why the GUIDE model is so exciting.” 

While CMS has not limited the number of groups that can participate in the new model, the agency recognizes that, for the moment, few groups have the ability to provide the service. So, it created a track for those who want to start a program, which may encourage some hospital systems, physician practices, and community-based organizations to enroll. A spokesperson said CMS intends to grow the number of organizations offering the service because the GUIDE model can reduce Medicare and Medicaid expenditures by preventing or delaying long-term nursing home stays and reducing hospital visits. 

Should the demonstration program prove financially successful, it could become a permanent part of Medicare, but that’s unlikely anytime soon. The Diabetes Prevention Program, which offers group counseling for weight loss and pre-diabetes and diabetes management, took 20 years from its inception in academic medical centers to its inclusion as a reimbursable service by CMS. If that’s the timetable, Care Ecosystem and similar models for dementia care are only halfway through that journey. 

Compare that to the latest dementia drug, Leqembi. Only six months passed before it moved from initial FDA approval to full reimbursement by CMS. Stock analysts predict Eisai and Biogen, jointly marketing the drug, will generate $13 billion in sales during its first five years on the market. Doneanemab, a second drug in that class—this one from Eli Lilly—is up for approval later this year and is expected to generate another $8 billion in global sales over the same period. Since the required tests and office visits needed to administer the infusion drugs cost twice as much as the drugs themselves, the total cost per patient will be about $82,500 a year. 

This eye-popping price tag is another reason CMS should use cost-benefit analysis before making payment decisions, especially when alternative approaches are available. Supporting one Alzheimer’s patient for a year on a drug with limited effect costs the same as putting 32 families in a program, which improves the quality of life for dementia patients and their caregivers over the disease’s course. It also saves money for CMS. 

To look at it another way, the $3.8 billion annually the U.S. will shell out over the next five years on dementia drugs of questionable value would be more than enough money to provide every American family with a loved one newly diagnosed with MCI (an estimated one-half to one-million families a year) a year’s worth of support and training, which will be helpful throughout the long, lonely and lamentable journey they are about to take. 

Near the end of my video chat with Catrece Strickland, I asked her how she was holding up. She paused, explaining she had to edit out the expletives that initially came to mind. “This disease sucks,” she began. “There’s no pretty way around that.” 

She recounted how her father couldn’t remember Sandra’s name earlier in the week—the woman who has lived with him for 55 years and cares for him nearly every waking moment. Mrs. Gaines immediately called Catrece, who jumped on the phone with her dad. “When he started remembering, he got emotional, she got emotional.” I could see the tears forming in her eyes. Her voice choked briefly. “It is what it is. The more those little changes happen, the more I can see the light going out with my own eyes. But he’s still here. And as long as he’s here, he’ll be all right.” 

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Merrill Goozner, a former editor of Modern Healthcare, publishes “GoozNews” on Substack.