Dementia care programs help if caregivers can find them

Sarah SmithFebruary 27, 2023

There is no cure for Alzheimer’s yet. But dozens of programs developed over the past 20 years can improve the lives of both people living with dementia and those caring for them.

Unlike support groups, these programs train caregivers in specific skills, such as how to manage stress, keep the home safe, communicate effectively with those who are confused, or deal with issues that arise as this debilitating condition progresses. illness.

Some of these programs, known as “comprehensive dementia care,” also employ trainers or navigators to help assess patient and caregiver needs, develop personalized care plans, connect families to community resources, coordinate health and social services, and offer ongoing practical and emotional support.

Unfortunately, despite a significant body of research supporting their effectiveness, these programs are not widely available or widely known. Only a small fraction of families struggling with dementia are involved, even though unmet care needs are widespread. And the funding is meager compared to the amount of money that has poured into the decades-long, headline-grabbing search for pharmaceutical treatments.

“It’s frustrating that the public debate about dementia is being dominated by drug development, as if all it takes is a magic pill,” said Laura Gitlin, renowned dementia researcher and dean of the College of Nursing and Health Professions at Drexel University in Philadelphia.

“We need a much more comprehensive approach that recognizes the long-term degenerative nature of this disease and the fact that dementia is a family affair,” she said.

In the U.S., more than 11 million unpaid and mostly untrained family members and friends provide more than 80% of the care for people with dementia, providing $272 billion in care in 2021, according to the Alzheimer’s Association. (This does not include patients living in nursing homes and other institutions.) Studies show that these “informal” caregivers spend more time caring for people with dementia and experience a greater burden of psychological and physical stress than other caregivers. care.

Despite these contributions, Medicare expected to spend $146 billion on people with Alzheimer’s or other types of dementia in 2022, while Medicaid, which pays for nursing home care for people with low incomes or disabilities, expected to spend about $61 billion. .

One might think that such huge expenses provide quality medical care and adequate support services. But just the opposite is true. Health care for people with Alzheimer’s and other types of dementia in the United States—an estimated 7.2 million people, most of them older people—is widely recognized as fragmented, incomplete, poorly coordinated, and unresponsive to the important role played by family members. And support services are few and far between.

“What we offer people is, for the most part, completely inadequate,” said Carolyn Clevenger, associate dean for transformative clinical practice at Emory University’s Nell Hodgson Woodruff School of Nursing.

Clevenger helped create Emory’s Integrated Memory Care Program, a primary care practice run by nurse practitioners with experience in dementia. Like other integrated care programs, they place a strong emphasis on the needs of caregivers as well as the needs of patients. “We spent a lot of time answering all kinds of questions and practicing,” she told me. This year, Clevenger said she hopes to have three more venues open across the country.

Expansion is a goal shared by other comprehensive care programs at UCLA (Alzheimer’s and Dementia Care Program, now available at 18 centers), Eskenazi Health at Indianapolis, UC San Francisco (care ecosystem, 26 centers), Johns Hopkins University. (Maximum Independence at Home) and the Benjamin Rose Institute on Aging in Cleveland (BRI care consultations, 35 sites).

Over the past decade, a growing body of research has shown that these programs improve the quality of life of people with dementia; relieve unpleasant symptoms; help avoid unnecessary emergency room visits or hospitalizations; and delay placement in a nursing home, as well as reduce symptoms of depression, physical and emotional stress, and general stress for caregivers.

With regard to a major event in 2021, a panel of experts hosted by the National Academies of Science, Engineering and Medicine said there is enough evidence of benefit to recommend widespread implementation of comprehensive dementia treatment programs.

Now these program leaders and dementia advocates are lobbying Medicare to launch a pilot project to test a new payment model for comprehensive dementia care. They met with staff at the Center for Medicare and Medicaid Innovation, and “CMMI has shown significant interest in this,” according to Dr. David Reuben, chief of UCLA’s division of geriatrics and head of its dementia treatment program.

“I am very optimistic that something will happen later this year,” said Dr. Malaz Bustani, an Indiana University professor who helped develop the Eskenazi Health Aging Brain Care program and participated in discussions with the Centers for Medicare and Medicaid. Services.

The Alzheimer’s Association also advocates a pilot project of the kind that could be adopted across the entire Medicare program if it proves useful and cost-effective, said Matthew Baumgart, the association’s vice president of health policy. Under the association’s model, comprehensive dementia care programs would receive $175 to $225 a month per patient, in addition to what Medicare pays for other types of care.

A study commissioned by the association estimates that implementing a comprehensive dementia care model could save Medicare and Medicaid $21 billion over 10 years, mostly by reducing patients’ use of critical care services.

Several challenges are expected, even as Medicare experiments with ways to support comprehensive dementia care. There are not enough health workers trained to treat dementia, especially in low-income rural and urban areas. Moving programs into clinical settings, including primary care practices and medical clinics, can be challenging given the magnitude of the needs of patients with dementia. And the training needs of program staff are significant.

Even if families receive some assistance, they may not be able to afford the help they need around the house or other services, such as adult day care. And many families struggling with dementia may not find help.

To address this issue, the Benjamin Rose Institute on Aging plans to publish an online consumer directory of evidence-based programs for dementia caregivers later this year. For the first time, people will be able to search by zip code for help available near them. “We want to communicate to caregivers that help is available,” said David Bass, senior vice president of the Benjamin Rose Institute, who is leading the effort.

Typically, programs for carers of dementia are funded by grants or public funds and are free for families. They are often available through regional aging agencies, organizations that families should consult if they need help. Some examples:

Experienced Guardiandelivered within six weeks to small groups in person or via Zoom. Each week, the group leader (often a social worker) gives a mini-lecture, discusses helpful strategies, and guides group members through exercises to help them cope with dementia-related problems. The Savvy Caregiver Program, now offered in 20 states, recently introduced a seven-session online version of the program that caregivers can follow on their own schedule.
ACHIEVEMENT Community, a simplified version of the program recommended in the 2021 National Academy of Sciences report. In four-hour sessions, in person or by phone, the trainer teaches caregivers about dementia, problem-solving strategies and symptom management, mood, stress, and safety. A similar REACH VA program is available nationwide through the Department of Veterans Affairs.
Individual activity program. In eight home-based sessions over four months, an occupational therapist evaluates the interests, functional abilities, and home environment of a person living with dementia. Suggested are activities that can keep the person engaged in meaningful ways, as well as tips on how to do them and tips on how to simplify activities as dementia progresses. Gitlin says the program is being rolled out in Australian healthcare settings and is being considered by the VA as a possible component of home-based geriatric care.

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