Imagine that there were a set of resources that had been shown to provide highly effective help to those caring for loves ones with dementia. Now imagine that those proven programs remained chronically underfunded and extremely hard, if not impossible, for most caregivers to find. That’s the picture we came away with as we read this distressing report recently published by Kaiser Health News.
In the article, reporter Judith Graham paints a scenario in which all available funding for dementia treatment seems to be channeled into medical research – the quest for “the magic pill,” as one health expert called it – while millions of caregivers in desperate need can’t access the programs that would help them cope. The bottom line is that there are a host of dementia-care programs out there that can dramatically improve circumstances for caregivers, yet most of those who need the help simply can’t tap into these elusive programs due to lack of funding and the absence of any comprehensive caregiving strategy in the U.S.
Programs Work – Yet Only a Small Number of Families Benefit
At the top of her article, Graham makes it clear: there is no cure for Alzheimer’s right now, but highly effective therapies and programs do exist, and have for about two decades. Many of these programs are aimed squarely at those in greatest need: the caregivers.
“Unlike support groups, these programs teach caregivers concrete skills such as how to cope with stress, make home environments safe, communicate effectively with someone who’s confused, or solve problems that arise as this devastating illness progresses,” Graham writes. “Some of these programs, known as ‘comprehensive dementia care,’ also employ coaches or navigators who help assess patients’ and caregivers’ needs, develop individualized care plans, connect families to community resources, coordinate medical and social services, and offer ongoing practical and emotional support.”
Sadly, although these programs are highly proven and heavily researched, they aren’t broadly available or widely known, and the funding simply isn’t even remotely comparable to the millions devoted to the search for an Alzheimer’s “miracle cure.” The point of the article seems to be that, while the search for the cure continues, programs for caregivers are too often ignored.
Public Perception of Dementia Dominated by Drug Research
“It’s distressing that the public conversation about dementia is dominated by drug development, as if all that’s needed were a magic pill,” says Laura Gitlin, a prominent dementia researcher at Drexel University in Philadelphia. “We need a much more comprehensive approach that recognizes the prolonged, degenerative nature of this illness and the fact that dementia is a family affair.”
The stats around dementia caregiving are pretty staggering. Graham writes, “In the U.S., more than 11 million unpaid and largely untrained family members and friends provide more than 80 percent of care to people with dementia, supplying assistance worth $272 billion in 2021, according to the Alzheimer’s Association. (This excludes patients living in nursing homes and other institutions.)”
Moreover, the burden on these caregivers is often higher than usual, demanding longer hours and causing greater psychological and physical distress because of the care they provide their loved ones.
Tens of Billions Spent, Yet Care Remains Fragmented, Incomplete
“Despite those contributions,” Graham writes, “Medicare expected to spend $146 billion on 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.”
This is an enormous amount of spending, and you would be forgiven for thinking that that translates to a higher standard of care. But that simply isn’t the case. “Medical care for people with Alzheimer’s and other types of dementia in the U.S. — an estimated 7.2 million individuals, most of them seniors — is widely acknowledged to be fragmented, incomplete, poorly coordinated, and insensitive to the essential role that family caregivers play. And support services are few and far between,” Graham explains.
Carolyn Clevenger, an associate dean at Emory University’s Nell Hodgson Woodruff School of Nursing, notes, “What we offer people, for the most part, is entirely inadequate.”
Universities Lead the Way Toward Better Caregiver Support
Clevenger knows more about this subject than most, as she helped to create the Integrated Memory Care program at Emory where nurse practitioners with expertise in dementia serve both dementia patients as well as the needs of their loved ones in a comprehensive way. Much of the program’s role falls to answering questions and coming alongside families in a coaching capacity. This year, Clevenger hopes to open three additional sites across the country.
Other university-based comprehensive care programs hope to expand as well, such as those at UCLA ( the Alzheimer’s and Dementia Care Program, now available at 18 sites), Eskenazi Health in Indianapolis, the University of California-San Francisco ( Care Ecosystem, 26 sites), Johns Hopkins University ( Maximizing Independence at Home), and the Benjamin Rose Institute on Aging in Cleveland ( BRI Care Consultation, 35 sites).
“Over the past decade,” Graham writes, “a growing body of research has shown these programs improve the quality of life for people with dementia; alleviate troublesome symptoms; help avoid unnecessary emergency room visits or hospitalizations; and delay nursing home placement, while also reducing depression symptoms, physical and emotional strain, and overall stress for caregivers.”
And researchers are noticing the importance of these programs. In 2021, an expert panel organized by the National Academies of Sciences, Engineering, and Medicine acknowledged that there is sufficient evidence of the benefit of comprehensive care programs, and recommended that they be broadly implemented.
Pushing Medicare to Support Comprehensive Dementia Care
The trick, as usual, is putting the funding in the right places. Currently, dementia advocates and program leaders are lobbying Medicare to test a new model to pay for comprehensive dementia care, meeting with the staff at the Center for Medicare and Medicaid Innovation (CMMI).
Fortunately, doctors in the field are optimistic, remarking in Graham’s article that CMMI has expressed considerable interest in the pilot program.
Graham writes, “The Alzheimer’s Association also advocates for a pilot project of this kind, which could be adopted ‘Medicare-wide’ if it’s shown to 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.”
She adds, “ A study commissioned by the association estimates that implementing a comprehensive care dementia model could save Medicare and Medicaid $21 billion over 10 years, largely by reducing patients’ use of intensive health care services.”
Training, Capacity, Cost Remain as Major Obstacles
Despite the optimistic outlook, there are plenty of obstacles to overcome yet for comprehensive programs to be made more accessible. Graham writes, “There aren’t enough health care professionals trained in dementia care, especially in rural areas and low-income urban areas. Moving programs into clinical settings, including primary care practices and medical clinics, may be challenging given the extent of dementia patients’ needs. And training needs for program staff members are significant.”
Also, the financial assistance provided may still not be enough for some families to afford help in the home or services like adult day care.
“To address that, the Benjamin Rose Institute on Aging later this year plans to publish an online consumer directory of evidence-based programs for dementia caregivers,” Graham writes. “For the first time, people will be able to search, by ZIP code, for assistance available near them.”
Some Community-Based Resources to Check Out
Graham concludes, “Generally, programs for dementia caregivers are financed by grants or government funding and free to families. Often, they’re available through Area Agencies on Aging — organizations that families should consult if they’re looking for help.”
She provides the following list of examples, which we felt might be helpful for our readers to see verbatim from her article:
- Savvy Caregiver, delivered over six weeks to small groups in person or over Zoom. Each week, a group leader (often a social worker) gives a mini-lecture, discusses useful strategies, and guides group members through exercises designed to help them manage issues associated with dementia. Now offered in 20 states, Savvy Caregiver recently introduced an online, seven-session version of the program that caregivers can follow on their schedule.
- REACH Community, a streamlined version of a program recommended in the 2021 National Academy of Sciences report. In four hour-long sessions in person or over the phone, a coach teaches caregivers about dementia, problem-solving strategies, and managing symptoms, moods, stress, and safety. A similar program, REACH VA, is available across the country through the Department of Veterans Affairs.
- Tailored Activity Program. In up to eight in-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 individual meaningfully engaged are suggested, along with advice on how to carry them out and tips for simplifying the activities as dementia progresses. The program is being rolled out across health care settings in Australia and is being reviewed as a possible component of geriatric home-based care by the VA.
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(originally reported at www.khn.org)