In New Orleans, Navigating Dementia With A Guide

Photograph by Claire Bangser

Three years ago Andrea Price got a worried call from a cousin who had just spoken with Price’s mother, Lucille, who was then 77. Despite speaking with her daughter by telephone several times a day, Lucille suddenly couldn’t remember Price’s name. Price jumped into her car and drove the forty-five minutes from her home in Gulfport, Mississippi, to her mother’s house in New Orleans, Louisiana. She found her mother staring into space, trying to unlock the front door with the television remote control.

After tests ruled out a stroke, Price asked her mother’s primary care physician for help, but the doctor said it was outside her expertise. So Price contacted the Ochsner Brain Health and Cognitive Disorders Program, where a neurologist and other specialists examined Lucille.

Lucille, a retired educator who had worked with intellectually disabled students, soon was diagnosed with dementia. The Ochsner specialists ordered headache and sleep medications and other treatments. But Price still felt swamped by her mother’s sweeping medical, social, legal, financial, and daily living needs. That’s when the memory care team put her in touch with Carolina Pereira Osorio, a care navigator with Ochsner’s new Care Ecosystem program, which provides nonmedical support to people with dementia and their families.

Pereira Osorio became Price’s “sounding board,” guiding her in her new role as a caregiver for a person with dementia. Pereira Osorio’s help included providing resources and advice on drafting a will and a power of attorney, getting home medical equipment, preparing meals, dealing with medications, paying bills, and building a ramp at Lucille’s house. She also gave Price tips on how she and other family members could better understand Lucille’s brain changes and behavior and communicate more effectively with her.

“At first I did a lot of crying away from my mom,” said Price, a no-nonsense retired Navy veteran who served as a senior chief in air traffic control. “I had no clue what was available to me and my mom. I wasn’t eating and sleeping and was running myself down, feeling I was the only one in the world going through this. Carolina was a blessing. I’d be totally lost without this support.”

‘A Major Problem’

Remarkably, most hospitals, memory care clinics, and neurology and primary care physician practices around the country provide no nonmedical support services to patients and their families after a diagnosis of Alzheimer’s disease or another form of dementia, experts say. That’s a major problem, because various types of dementia affect almost six million Americans—a number likely to reach around fourteen million by 2050.¹

It’s a “crucial hole in the system,” said William Taylor, an associate professor of medicine at Harvard Medical School, in Boston, Massachusetts, who has trained many physicians on how to talk to patients and families about end-of-life issues. The role ideally should be performed by primary care physicians, but they lack the time and resources, and most neurologists don’t see it as their job to shepherd families through the dementia process, he added.

Price said that a decade ago, her mother’s older sister suffered terribly and died not long after being diagnosed with dementia, in part because her primary care physician didn’t know what to do and the family lacked access to any care coordination. “So when my mom was diagnosed, she felt her fate would be the same,” Price said. “That’s when I started digging. I said, ‘We’ll fight to the end somehow.’”

This service gap drives up health care spending. The rate of emergency department (ED) and hospital admissions for this population is high because families often don’t know how to handle crises arising from dementia at home, experts say. Per capita Medicare spending for people with dementia averaged about $25,200 in 2019 compared with $7,700 for people without dementia, according to the Alzheimer’s Association.² Estimated health care and long-term care spending for seniors with dementia totaled $305 billion in 2020.¹

The uncertain to disappointing results seen with drugs such as Aduhelm³ that are designed to slow dementia’s disease process or mitigate its symptoms have only heightened the need to improve services to help patients and families through this terrifying journey. “Even if the treatments work as well as everyone hopes, they’re still not resolving the issue for Alzheimer’s families,” said Robert Egge, chief public policy officer for the Alzheimer’s Association. “There is an unresolved need for better dementia care.”

One big reason for the lack of supportive services is that there’s no funding mechanism for them. Insurers, including traditional Medicare, Medicare Advantage, and Medicaid, don’t pay for most of these care management services.⁴ Advocates led by the Alzheimer’s Association are lobbying the Centers for Medicare and Medicaid Services (CMS) to launch a demonstration of value-based payment models for these services.² There’s also bipartisan support in the House and Senate for legislation that would provide comprehensive care management services for people with Alzheimer’s, but there’s no sign of imminent action on the bill.⁵

The advocates hope that policy makers and payers will recognize the cost-saving potential of comprehensive support for people with dementia and their families under capitated and other value-based payment models. “Under fee-for-service, there’s not enough financial incentive to create these programs,” Egge said. “But value-based or capitated reimbursement provides incentives for services that reduce [ED] visits, hospitalizations, and the cost drivers behind dementia care.”

‘A Burden Off My Shoulders’

Some physicians say that they badly need help in caring for patients with dementia.

Some physicians say that they badly need help in caring for patients with dementia. “When I encounter a patient with memory loss or behavior issues related to dementia, it’s overwhelming even for me,” said Kathy Jo Carstarphen, an internist at Ochsner who heads the Louisiana Geriatric Workforce Enhancement Program and refers many patients to Care Ecosystem. “That program has taken a burden off my shoulders in managing those patients with dignity and keeping them out of the hospital.”

Ochsner Health System’s Brain Health and Cognitive Disorders Program started Care Ecosystem in the New Orleans area in 2019 with two private charitable donations of $500,000 each, under the leadership of R. John Sawyer, a neuropsychologist who is codirector of the brain health center. The program replicates the Care Ecosystem program first launched in 2014 at the University of California San Francisco’s (UCSF’s) Memory and Aging Center by Katherine Possin, an associate professor of neurology there. To launch the program, the center applied for and received a Health Care Innovation Award from the Center for Medicare and Medicaid Innovation.⁶

A total of eight provider sites around the country have implemented the program, including HealthPartners in Saint Paul, Minnesota, and Mass General Brigham in Boston, Possin said. Other organizations, including the Cleveland Clinic Nevada in Las Vegas, are considering starting one.

“We needed to optimize care for people with dementia after their diagnosis, since there’s no (effective) drug therapy on the horizon,” Sawyer said. “When we first meet with patients and their families, it’s the worst day of their life. Nothing makes them feel more frightened than not having someone to call. Knowing we are there for them provides me with lots of warmth and satisfaction.”

A few other centers around the country have developed similar supportive service models for people with dementia and their caregivers. These include the Alzheimer’s and Dementia Care program at the University of California Los Angeles (UCLA); the Aging Brain Care Medical Home program at Indiana University, in Indianapolis; the BRI Care Consultation program at the Benjamin Rose Institute on Aging, in Cleveland, Ohio; the Integrated Memory Care Clinic at Emory University, in Atlanta, Georgia; and the MIND at Home program at Johns Hopkins University, In Baltimore, Maryland.²

Some of the programs feature nurse practitioners rather than unlicensed navigators, and some emphasize in-person meetings rather than telephone visits, said David Reuben, director of UCLA’s Alzheimer’s and Dementia Care program.

“Each of these programs have pros and limitations,” Reuben said. “We don’t know which programs are most cost-effective or are most effective for different people based on level of dementia.” Care Ecosystem, he added, is the only one that’s been tested in a randomized clinical trial.

That trial, whose results were published in JAMA Internal Medicine in 2019, found improved quality of life for people with dementia, reduced ED visits, and decreased caregiver depression and burden for rural and urban Care Ecosystem participants in three states. It also showed an average one-year cost savings per patient of $600 from reduced ED visits, ambulance use, and hospitalizations.⁷

Possin said that the Care Ecosystem model is less expensive than the other supportive service models because it uses unlicensed but well-trained navigators, and it’s telephone based. At UCSF the average annual per person cost of providing the Care Ecosystem program was $2,892, although it can be much lower if navigators carry higher caseloads, a 2019 study found.⁸

“Nurses cost more money,” Possin said. “The navigator can spend a lot of time on the phone building rapport with the caregiver, and most of the issues can be addressed over the phone.”

More than 200 people with dementia and their caregivers have received supportive services from Ochsner’s Care Ecosystem program, according to Sawyer. Most of the patients are older than age sixty-five and beneficiaries of either traditional Medicare or a Medicare Advantage plan, with some served through Ochsner’s Medicare accountable care organization. About three of every five patients served by the program are White; African Americans make up much of the rest of the population.

To qualify for the one-year program, patients must be diagnosed with some form of dementia and live in the community, not in a long-term care facility. They also cannot have a diagnosis of serious mental illness or current substance use disorder. And they must have visited the ED or had an inpatient hospital stay within the past twelve months.

Patients also must have an identified caregiver, whether it’s a spouse, adult child, other relative, or friend—a fact that, Care Ecosystem staff regretfully acknowledge, excludes people who lack a family or social network. There’s a heavy emphasis on providing personal help to the caregiver as well as to the person with dementia—for instance, guiding them on taking care of their own health and sharing the caregiving burden with others.

Unlicensed care team navigators such as Pereira Osorio are the key players in the Care Ecosystem model. At Ochsner, three navigators, after receiving forty hours of training, work under the supervision of and in collaboration with neuropsychologists, neurologists, social workers, nurses, and pharmacists.

First, the multidisciplinary Brain Health and Cognitive Disorders Program team develops an individualized care plan for the people with dementia and caregivers. After that, the navigators telephone each participating caregiver once a month to find out how the patient and caregiver are faring. The navigators turn to licensed members of the team when issues arise that require additional authority or training, such as medication management. They also keep the patients’ regular medical care providers up to date on any developments.

Meanwhile, the patients and caregivers continue to come to the clinic regularly to see the center’s neurologists, neuropsychologists, nurses, and pharmacists for medical evaluations and treatment.

The Ochsner program also offers caregivers and other family members regular, free support-group sessions via Zoom on brain physiology, communication and engagement strategies, self-care, and long-term care options. In addition, patients can participate in a new neurologic music therapy program, where according to program staff, one patient who couldn’t speak learned to sing out when he was hungry or needed something else.

After one year, patients and caregivers “graduate” from the Care Ecosystem program, but the caregivers are welcome to maintain their connection and are encouraged to call the care team navigator and other staff as needed.

Pereira Osorio, who started at Ochsner’s brain health center as a volunteer last year, recently immigrated from Colombia with a master’s degree in psychogerontology. She hopes to apply for a PhD program in the US and eventually return to work in gerontology in Colombia. Her role as a care navigator at Ochsner, she says, “is a very fulfilling job, and it’s a very cohesive team. I love that it’s a multidisciplinary environment with lots of learning.”

‘How’s Mom Doing?’

In early March Pereira Osorio called to check in with a woman on her caseload who is taking care of her husband.

“Has he had any falls in the past month?” Pereira Osorio asked.

“He had a couple of falls in the house in February,” the caregiver answered. “His default is to lean forward and run. That’s how he thinks he’s going to avoid falling. His personal trainer tries to stress lifting his knees and not running, but I don’t know if the lessons are penetrating.”

Pereira Osorio’s response focused on providing context before moving on to potential solutions: “Repeating the exercises with him helps with motor memory. We can review having rails, higher seats, or an alert chime, so you know when he stands up and you can watch. The sofa or chair where he spends most of his time is a good place to start. I’ll email you links to different ideas that help. Anything else you feel you’re needing?”

For Pereira Osorio, the key to these interactions is balancing active, empathetic listening with a keen attention to detail. Her second call that afternoon reached a woman who takes care of her ninety-nine-year-old mother. The daughter was scheduled for her own knee replacement surgery the following week.

“Have you thought about your loved one’s care while you’re recovering from surgery?” Pereira Osorio asked.

“My niece will take off two weeks and stay with Mom,” the daughter answered.

Pereira Osorio probed further: “How’s Mom doing?”

The daughter provided an update: “I went outside three weeks ago, and she was standing across the street in her robe, in the cold. It gave us a little scare.”

“You’re really good about knowing when she’s a little off,” Pereira Osorio answered. “To avoid you and your sister obsessively checking the door to see if it’s locked, we can consider sensors for the door. And if you want to consider [an adult day care center], I can send you that information by email.”

Pereira Osorio said caregivers often need help with strategies in managing their loved ones’ behavior at home, typically involving basic activities such as eating and bathing. She described how another caregiver recently was having trouble getting her husband, whose primary progressive aphasia creates difficulties with speech, to sit down at the table for lunch. Pereira Osorio advised her to switch to hand gestures—such as moving her hand to her mouth—and short words and phrases such as “lunch time.”

“Our usual approach is to rely on reasoning, but we forget reasoning may not be the way to go when someone’s brain is not healthy,” she explained. Using these new methods, this caregiver got her husband to sit for lunch every day. “It sounds like a very small thing, but when it’s daily, it’s very burdensome for the caregiver,” Pereira Osorio said.

The Care Ecosystem team sometimes counsels caregivers on how to set limits to protect the quality of their own lives.

The Care Ecosystem team sometimes counsels caregivers on how to set limits to protect the quality of their own lives. At a team meeting in early March, navigator Debbie Javorsky said that one caregiver finally took her advice on how to stop his wife from calling him at work forty times a day.

Sawyer responded, “Caregivers need us to give them permission to do things they feel guilty about doing.”

‘In Short Supply’

As patients’ dementia advances, Pereira Osorio and her colleagues help caregivers and families find adult day care, respite care for themselves, or a “sitter” if the caregiver is working or has other responsibilities. At later stages, they can help the family find a nursing home or arrange palliative or hospice care.

Community-based services are in short supply, particularly if families don’t have the financial resources to pay out of pocket.

But these community-based services are in short supply, particularly if families don’t have the financial resources to pay out of pocket or if they live in smaller towns or rural areas, said Nancy Insidioso, a neuropsychology social worker at Ochsner who partners with Pereira Osorio on cases. The lack of services was especially bad at the height of the pandemic, when adult day care centers were shuttered and patients and caregivers felt desperately alone.

“The caregivers got horribly worn down with no services and not getting even one minute of a break,” Insidioso said. “Having things reopen and services go back has definitely helped. But it’s a constant struggle for families to access a solid chunk of respite care hours.”

Chantè Jones, director of health services at the nonprofit Kingsley House’s Adult Day Care in New Orleans—which is by far the area’s largest provider, with capacity for 158 participants—agreed that there’s a stark shortage of spots for people with dementia. Also, traditional Medicare and some Medicare Advantage plans don’t pay for adult day care, which costs $35–$65 for each day of care at this facility, depending on a person’s disability level.

“There’s not enough money going into community-based programs,” UCLA’s Reuben said. “By and large they are living hand to mouth.”

The Ochsner Health System would like to expand Care Ecosystem because it’s currently much too small to serve all of the senior patients with dementia who are enrolled in its Medicare Advantage and Medicare accountable care organization programs, said Philip Oravetz, Ochsner’s chief population health officer. But first he has to convince payers and other Ochsner executives that the program produces a return on investment and, thus, that it makes financial sense to pay for it.

A research review last year by the National Academies of Sciences, Engineering, and Medicine found “low-strength” evidence that collaborative care models such as Care Ecosystem have a beneficial effect on quality of life, quality of care, and ED visits. It also found evidence that these programs both decrease neuropsychiatric symptoms and nursing home placement and reduce caregiver strain and depression. The review suggested, however, that more research is needed.⁴

Oravetz described Ochsner’s unpublished preliminary cost analysis: It showed that for patients with dementia who participated in Care Ecosystem, average total per member per month spending rose 12 percent after twelve months of participation, whereas for nonparticipants it rose 43 percent. Average per member per month ED costs fell 27 percent for participants, compared with a 56 percent increase for nonparticipants. And average per member per month inpatient costs increased 2 percent for participants while soaring 126 percent for nonparticipants during the same period.

These results show the early value of Care Ecosystem’s care coordination and family education, particularly on reducing ED use, Oravetz said. “This makes perfect sense because Care Ecosystem is there answering questions, alleviating anxiety, and offering coordination and advice so patients don’t go to the [ED],” Oravetz said. “We’re anticipating that what will happen next is a drop in inpatient visits.”

The per participant annual cost of operating the program was $759, meaning that the return on investment to Ochsner was two to one, according to the draft preliminary analysis.

Oravetz said that as soon as Ochsner is able to complete its documentation of the program’s savings and return on investment, he’ll ask Medicare Advantage plans to cover the Care Ecosystem services and the Center for Medicare and Medicaid Innovation to provide a grant to further test the model.

“Alzheimer’s is turning into an epidemic as the population ages, and we need to take care of these folks,” Oravetz said. “Someone has to pay for those resources.”

So far, however, Medicare Advantage plans around the country have not expressed interest in covering these types of services despite the potential cost savings and care improvements, according to leaders of dementia support programs.

“I’m surprised by the Medicare Advantage plans,” UCLA’s Reuben said. “It would make the most sense for them because they’re capitated. We’ve approached a number of them. They listen politely, they say it sounds interesting, but very few plans have done much to improve dementia care.”

Humana and Aetna, two large Medicare Advantage providers in the New Orleans area, declined to comment for this article. America’s Health Insurance Plans, the industry’s trade group, also declined to comment. CMS would not provide an interview or statement about the Alzheimer’s Association proposal to launch a new dementia care demonstration program.

The Ochsner staff are considering various ways to improve the Care Ecosystem program. They’re trying to make sure that different types of dementia patients and their families get the services they most need—for instance, guiding later-stage patients into palliative care. They’d also like to continue serving patients and families for longer than twelve months while varying the intensity of care depending on need, Sawyer said.

Carstarphen, the Ochsner internist, hopes that Care Ecosystem can find a way to serve patients with dementia who lack an engaged family member or friend to serve as a reliable caregiver, although she recognizes that program staff already are hard pressed to serve the clients they have.

“It pains me that a massive segment of the population just can’t get those resources,” she said. “Those are the most burdensome in terms of excessive hospitalizations. But at least they’re taking that segment that has a functional caregiver off my shoulders.”

‘Step By Step’

Rhonda Dennis, who lives in Morgan City, Louisiana, said she hopes that more families like hers gain access to programs like Care Ecosystem. Dennis’s mother, Kay Raymond, who formerly headed an emergency aid facility for low-income people in Morgan City, was diagnosed with dementia seven years ago. In the past few years she started struggling with her symptoms more and more. She would sit in front of the television all day without moving, forgetting to drink water or go to the bathroom. As her cognitive decline continued last year, Raymond’s family started with Care Ecosystem.

Dennis, her sister, and their father, Michael Raymond, a retired fire chief, worked with Pereira Osirio to learn how to engage Kay, who’s now 69, in activities such as painting and storytelling. They also learned how to structure choices such as meal options so that Kay doesn’t feel overwhelmed. The navigator also encouraged them to hire a part-time paid caregiver to help out as Kay’s disease progresses.

“Before the program, I found it was almost like you were trying to navigate an unfamiliar highway in the dark,” Dennis said tearfully. “Care Ecosystem was like a map to say where you’re going and when you can expect to arrive, step by step. No matter what happened on that journey, we had that safeguard there to help us. My huge thanks to all those involved in the program.”

NOTES

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