{"id":7473,"date":"2023-11-15T07:29:43","date_gmt":"2023-11-15T12:29:43","guid":{"rendered":"https:\/\/www.silvercentury.org\/?p=7473"},"modified":"2023-11-17T07:39:46","modified_gmt":"2023-11-17T12:39:46","slug":"special-programs-teach-much-needed-skills-to-dementia-caregivers","status":"publish","type":"post","link":"http:\/\/78.142.243.82\/~silvercentury\/2023\/11\/special-programs-teach-much-needed-skills-to-dementia-caregivers\/","title":{"rendered":"Special Programs Teach Much-Needed Skills to Dementia Caregivers"},"content":{"rendered":"

More than 80 percent of the care provided for individuals who have dementia comes from family and friends. Most of these caregivers have no training and get little help. In this article for <\/span><\/i>KFF Health News<\/span><\/a>, journalist Judith Graham describes the programs that are available now, locally or online, what they do and why they\u2019re so important. <\/span><\/i>KFF Health News<\/span> posted her piece on February 27, 2023. It also ran on <\/span><\/i>CBS News<\/a>. <\/span> <\/span><\/i><\/p>\n

There\u2019s no cure\u2014yet\u2014for Alzheimer\u2019s disease. But dozens of programs developed in the past 20 years can improve the lives of both people living with dementia and their caregivers. <\/span><\/p>\n

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\u2019s confused or solve problems that arise as this devastating illness progresses.<\/span><\/p>\n

Some of these programs, known as \u201ccomprehensive dementia care,\u201d also employ coaches or navigators, who help assess patients\u2019 and caregivers\u2019 needs, develop individualized care plans, connect families to community resources, coordinate medical and social services and offer ongoing practical and emotional support.<\/span><\/p>\n

Unfortunately, despite a significant body of research documenting their effectiveness, these programs aren\u2019t broadly available or widely known. Only a small fraction of families coping with dementia participate, even in the face of <\/span>pervasive unmet care needs<\/a>.<\/span> And funding is scant, compared with the amount of money that has flooded into the decades-long, <\/span>headline-grabbing<\/span> <\/span>quest<\/span><\/a> for pharmaceutical therapies.<\/span><\/p>\n

\u201cIt\u2019s distressing that the public conversation about dementia is dominated by drug development, as if all that\u2019s needed were a magic pill,\u201d said Laura Gitlin, PhD, a prominent dementia researcher and dean of the College of Nursing and Health Professions at Drexel University in Philadelphia.<\/span><\/p>\n

\u201cWe need a much more comprehensive approach that recognizes the prolonged, degenerative nature of this illness and the fact that dementia is a family affair,\u201d she said.<\/span><\/p>\n

In the United States, more than 11 million unpaid and largely untrained family members and friends provide more than 80 percent of care to people with dementia, supplying <\/span>assistance worth $272 billion<\/span><\/a> in 2021, according to the Alzheimer\u2019s Association. (This excludes patients living in nursing homes and other institutions.) <\/span>Research shows<\/span><\/a> these \u201cinformal\u201d caretakers devote longer hours to tending to those with dementia and have a higher burden of psychological and physical distress than other caregivers.<\/span><\/p>\n

These programs improve the quality of life for people with dementia while lessening the stress on their caregivers. <\/b><\/p><\/blockquote>\n

Despite those contributions, Medicare expected to <\/span>spend $146 billion<\/span><\/a> on people with Alzheimer\u2019s disease or other types of dementia<\/span> <\/span>in 2022, while Medicaid, which pays for nursing home care for people with low incomes or disabilities, expected to spend about $61 billion.<\/span><\/p>\n

One might think such enormous spending ensures high-quality medical care and adequate support services, but quite the opposite is true. Medical care for people with Alzheimer\u2019s and other types of dementia in the United States\u2014<\/span>an estimated 7.2 million individuals<\/a>,<\/span> most of them seniors\u2014is widely acknowledged to be <\/span>fragmented, incomplete, poorly coordinated and insensitive<\/span><\/a> to the essential role that family caregivers play. And support services are few and far between.<\/span><\/p>\n

\u201cWhat we offer people, for the most part, is entirely inadequate,\u201d said Carolyn Clevenger, NP, associate dean for transformative clinical practice at Emory University\u2019s Nell Hodgson Woodruff School of Nursing.<\/span><\/p>\n

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 caregivers\u2019 as well as patients\u2019 needs. \u201cWe spent a great deal of time answering all kinds of questions and coaching,\u201d she told me. This year, Clevenger said, she hopes three additional sites will open across the country.<\/span><\/p>\n

Expansion is a goal shared by other comprehensive care programs at UCLA <\/span>(the Alzheimer\u2019s and Dementia Care Program<\/a>,<\/span> now available at 18 sites), <\/span>Eskenazi Health<\/span><\/a> in Indianapolis, the University of California-San Francisco (<\/span>Care Ecosystem<\/a>, <\/span>26 sites), Johns Hopkins University <\/span>(Maximizing Independence at Home<\/a>)<\/span> and the Benjamin Rose Institute on Aging in Cleveland <\/span>(BRI Care Consultation<\/a>,<\/span> 35 sites).<\/span><\/p>\n

Over the past decade, a growing body of research<\/a> 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.<\/p>\n

Comprehensive dementia care programs could save billions for Medicare and Medicaid.<\/b><\/p><\/blockquote>\n

In an important development in 2021, an expert panel organized by the National Academies of Sciences, Engineering, and Medicine said there was <\/span>sufficient evidence of benefit<\/span><\/a> to recommend that comprehensive dementia care programs be broadly implemented.<\/span><\/p>\n

Now, leaders of these programs and dementia advocates are lobbying Medicare to launch a pilot project to test a new model to pay for comprehensive dementia care. They have been meeting with staff at the Center for Medicare and Medicaid Innovation, and \u201cCMMI has expressed a considerable amount of interest in this,\u201d according to David Reuben, MD, chief of geriatric medicine at UCLA and a leader of its dementia care program.<\/span><\/p>\n

\u201cI\u2019m very optimistic that something will happen\u201d later this year, said Malaz Boustani, MD, a professor at Indiana University, who helped develop Eskenazi Health\u2019s Aging Brain Care program and who has been part of the discussions with the Centers for Medicare & Medicaid Services.<\/span><\/p>\n

The Alzheimer\u2019s Association also advocates for a pilot project of this kind, which could be adopted \u201cMedicare-wide\u201d if it\u2019s shown to [be] beneficial and cost-effective, said Matthew Baumgart, the association\u2019s 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.<\/span><\/p>\n

A study<\/span><\/a> 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\u2019 use of intensive health care services.<\/span><\/p>\n

Later this year, caregivers will be able to search an online directory for programs in their area.  <\/b><\/p><\/blockquote>\n

Several challenges await, even if Medicare experiments with ways to support comprehensive dementia care. There aren\u2019t 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\u2019 needs. And training needs for program staff members are significant.<\/span><\/p>\n

Even if families receive some assistance, they may not be able to afford necessary help in the home or other services, such as adult day care. And many families coping with dementia may remain at a loss to find help.<\/span><\/p>\n

To address that, the <\/span>Benjamin Rose Institute on Aging<\/span><\/a> later this year plans to publish an online consumer directory of evidence-based programs for dementia caregivers. For the first time, people will be able to search, by ZIP code, for assistance available near them. \u201cWe want to get the word out to caregivers that help is available,\u201d said David Bass, a senior vice president at the Benjamin Rose Institute, who\u2019s leading that effort.<\/span><\/p>\n

Generally, <\/span>programs for dementia caregivers<\/span><\/a> are financed by grants or government funding and free to families. Often, they\u2019re available through Area Agencies on Aging\u2014organizations that families should consult if they\u2019re looking for help. Some examples:<\/span><\/p>\n