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Dementia care programs help, if carers can find them Story-level




There is no cure, yet, for Alzheimer’s disease. But dozens of programs developed in the last 20 years can improve the lives of both people living with dementia and their caregivers.

Unlike support groups, these programs teach caregivers concrete skills, such as how to deal with stress, make home environments safe, communicate effectively with someone who is confused, or solve problems as they arise. as this devastating disease progresses.

Some of these programs, known as “comprehensive dementia care,” also employ coaches or counselors who help assess the needs of patients and caregivers, develop individualized care plans, connect families with community resources, coordinate medical and social services and offer ongoing practical and social services. emotional support.

Unfortunately, despite a significant body of research documenting their effectiveness, these programs are not widely available or widely known. Only a small fraction of families coping with dementia participate, even in the face of pervasive unmet care needs. And the funding is scant, compared to the amount of money that has been poured into the search for pharmaceutical therapies that has grabbed headlines for decades.

“It is distressing that the public conversation about dementia is dominated by drug development, as if all it takes is a magic pill,” said Laura Gitlin, a leading dementia researcher and dean of the College of Nursing and Professions at Health from Drexel University in Philadelphia.

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

In the US, more than 11 million unpaid and largely untrained family and friends provide more than 80% of care for people with dementia, providing $272 billion worth of assistance in 2021, according to the Alzheimer’s Association. (This excludes patients living in nursing homes and other institutions.) Studies show these “informal” carers spend more hours caring for people with dementia and have a greater burden of psychological and physical distress than other carers.

Despite those contributions, Medicare expected to spend $146 billion in people with Alzheimer’s disease 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 a huge expense guarantees high-quality medical care and adequate support services. But quite the opposite is true. Health care for people with Alzheimer’s and other types of dementia in the US — about 7.2 million peoplemost of them older people, is widely recognized as fragmented, incomplete, poorly coordinated, and insensitive to the essential role played by family caregivers. And support services are few and far between.

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

Clevenger helped create the Integrated Memory Care program at Emory, a primary care practice run by nurse practitioners with expertise in dementia. Like other comprehensive care programs, they pay considerable attention to the needs of caregivers and patients. “We spent a lot of time answering all kinds of questions and advising,” she told me. This year, Clevenger said, she expects three additional sites to open across the country.

Expansion is a goal shared by other comprehensive care programs at UCLA (Alzheimer’s and Dementia Care Programnow available on 18 sites), Eskenazi Health in Indianapolis, the University of California-San Francisco (care ecosystem26 sites), Johns Hopkins University (Maximize independence at home), and the Benjamin Rose Institute on Aging in Cleveland (LBBB care consultation35 sites).

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

In a major development in 2021, a panel of experts organized by the National Academies of Sciences, Engineering and Medicine said there was sufficient evidence of benefit recommend that comprehensive dementia care programs be widely implemented.

Now, leaders of these programs and dementia advocates are pushing Medicare to launch a pilot project to test a new model for paying for comprehensive dementia care. They have been meeting with staff at the Center for Medicare & Medicaid Innovation and “CMMI has expressed considerable interest in this,” according to Dr. David Reuben, chief of geriatric medicine at UCLA and leader of its dementia care program. .

“I’m very optimistic that something will happen” later this year, said Dr. Malaz Boustani, an Indiana University professor who helped develop Eskenazi Health’s Aging Brain Care program and who has been part of discussions with Centers for Medicare & Medicaid Services.

The Alzheimer’s Association is also advocating for such a pilot project, which could be adopted “all of Medicare” if it proves to be beneficial and cost-effective, said Matthew Baumgart, the association’s vice president of health policy. Under a model proposed by the association, comprehensive dementia care programs would receive between $175 and $225 per month for each 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, largely by reducing patient use of acute care services.

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

Even if families receive some assistance, they may not be able to afford needed help at home or other services, such as adult day care. And many families dealing with dementia may not find help.

to address that, the Benjamin Rose Institute on Aging Later this year it plans to publish an online consumer directory of evidence-based programs for caregivers of people with dementia. For the first time, people will be able to search, by zip code, for assistance available near them. “We want to get the word out to caregivers that help is available,” said David Bass, a senior vice president at the Benjamin Rose Institute leading that effort.

Generally, programs for caregivers of people with dementia They are funded by grants or government funds and are free to families. They are often available through Area Agencies on Aging, organizations that families should consult if seeking help. Some examples:

  • smart caregiver, delivered over six weeks to small groups in person or via zoom. Each week, a group leader (often a social worker) gives a mini-lecture, discusses helpful strategies, and guides group members through exercises designed to help them manage problems associated with dementia. Savvy Caregiver, now offered in 20 states, recently introduced a seven-session online version of the program that caregivers can follow on their schedule.
  • community outreach, a simplified version of a program recommended in the 2021 National Academy of Sciences report. In four-hour sessions, in person or over the phone, a trainer teaches caregivers about dementia, problem-solving strategies problems and symptom management, mood, stress and safety. a similar program REACH GOESit is available nationwide through the Department of Veterans Affairs.
  • Tailor-made activity program. In up to eight home sessions over four months, an occupational therapist assesses the interests, functional abilities, and home environment of a person living with dementia. Activities that can keep the person significantly engaged are suggested, along with tips on how to do them and tips for simplifying activities as dementia progresses. The program is being rolled out to healthcare settings in Australia and is being reviewed by the VA as a potential component of geriatric home care, Gitlin said.

We can’t wait to hear from readers about the questions you’d like answered, the problems you’ve had with your care, and the advice you need to deal with the health care system. Visit to submit your requests or advice.

KHN (Kaiser Health News) is a national newsroom that produces detailed journalism on health issues. Along with Policy Analysis and Polling, KHN is one of the top three operating programs in KFF (Kaiser Family Foundation). KFF is an endowed non-profit organization that provides information on health issues to the nation.


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