\n
![](\"https:\/\/fortune.com\/img-assets\/wp-content\/uploads\/2024\/07\/GettyImages-1190951046-e1721851690474.jpg?w=2048\")
<\/p>\n [ad_1]
\n<\/p>\n
Medicare generally doesn\u2019t offer much to assist the 6.9 million Americans over age 65 with dementia<\/a> or their 11.5 million unpaid family caregivers<\/a>. But a new pilot program called the GUIDE Model<\/a> is changing that.<\/p>\n GUIDE, which stands for Guiding an Improved Dementia Experience and launched July 1, 2024, is creating a system of free caregiving navigators for people in Medicare who have any stage of dementia<\/a> and their family caregivers.<\/p>\n The navigators get 20 hours of training to help recipients sort through the confusing, sometimes maddening, system of health care and long-term care, so they receive appropriate assistance.<\/p>\n They meet with the Medicare beneficiary or caregiver between once a quarter and twice a month or more, depending on the complexity of the need. GUIDE participants also offer 24\/7 help lines.<\/p>\n Medicare reimburses GUIDE participants for their services\u2014$65 a month to $390 a month, depending on the complexity of care for the person with dementia. Medicare beneficiaries don\u2019t have to pay a nickel.<\/p>\n This type of guidance is sorely needed.<\/p>\n A 2024 Alzheimer\u2019s Association survey<\/a> found that 60% of health care workers believe the U.S. health care system is not effectively helping patients and their families navigate dementia care. A striking 70% of dementia caregivers surveyed says coordinating this care is stressful.<\/p>\n \u201cAt the point in time when you need a care navigator, it\u2019s usually when your fantasy of the Medicare fairy is dispelled. You learn there is <\/em>no Medicare fairy. The Medicare fairy is you,\u201d says Lindsay Goldman, CEO at Grantmakers in Aging.<\/p>\n Aside from dementia-care navigation, GUIDE participants\u2014such as medical groups, hospitals, senior living communities and home health care agencies\u2014can also provide free respite care valued at up to $2,500 for caregivers of people with moderate or severe dementia.<\/p>\n This lets those caregivers get a break from what can be mentally and physically draining assistance.<\/p>\n \u201cRespite care has been shown to be an important part of sustaining caregivers,\u201d says Mollie Gurian, vice president of policy and government affairs for LeadingAge, an association of nonprofit providers of aging services.<\/p>\n Rani Snyder, vice president of programs at the John A. Hartford Foundation, a philanthropy focused on the health of older adults, estimates that roughly 80,000 Medicare beneficiaries and their family caregivers will be helped by GUIDE participants in the first two years of the program.<\/p>\n People in Traditional Medicare, also called Original Medicare, can now look for GUIDE program participants in the database<\/a> on the Centers for Medicare and Medicaid Services site or by calling Medicare\u2019s toll-free number, 800-633-4227. In early 2025, the Alzheimer\u2019s Association plans to launch a searchable version on its website.<\/p>\n \u201cA person with Traditional Medicare who has been diagnosed with dementia, or who suspects they may have dementia, may contact a GUIDE participant to schedule an initial comprehensive assessment visit at any time,\u201d says a spokesperson for the Centers for Medicare & Medicaid Services. \u201cCaregivers may also contact GUIDE participants on behalf of an individual with dementia or whom they suspect to have dementia.\u201d<\/p>\n GUIDE is not available to people in nursing homes or hospice or with Medicare Advantage <\/a>plans from private health insurers, though those alternative plans can offer dementia care navigation on their own.<\/p>\n So far, there are only 96 GUIDE participants\u2014from places like Northwell Health<\/a>, United Church Homes, University of California San Francisco Medical Center (UCSF), Rippl Care of Washington, The Emory Clinic and UCLA Health. Some of them have many locations, though.<\/p>\n The number is low because GUIDE is initially just for trained professionals who are already providing dementia-care navigation.<\/p>\n On July 1, 2025, there will be roughly 300 more GUIDE participants from the likes of The University of Chicago Medical Center, Palm Beach Elder Care, Lutheran Senior Services in St. Louis, the Cleveland Clinic<\/a> Foundation, MedStar Total Elder Care and Stanford Health Care.<\/p>\n About one-third of the navigators will be in rural or urban areas representing communities with low socio-economic status.<\/p>\n While the number of GUIDE participants isn\u2019t enormous, the existence of the program has energized experts in dementia and caregiving.<\/p>\n \u201cWhat\u2019s exciting about GUIDE is that it incentivizes a different kind of care\u2014and payment for that care. This is comprehensive and focused on both the medical and non-medical needs of a person living with dementia,\u201d says Snyder, of the John A. Hartford Foundation.<\/p>\n \u201cSomeone in a GUIDE program can expect valuable assistance that\u2019s often absent today, like respite care, a home visit to assess safety risks or connections to community-based programs that offer transportation and meals,\u201d she added.<\/p>\n This kind of care has been proven to delay or prevent hospital stays, emergency room visits and nursing-home residencies.<\/p>\n Nursing home stays are the biggest source of out-of-pocket costs for people with dementia\u2014the national median cost a private room in one is $116,800, according to the Genworth Cost of Care Survey<\/a>.<\/p>\n GUIDE is \u201cvery significant,\u201d says Gurian, of LeadingAge. \u201cIt\u2019s the first model from the Center for Medicare and Medicaid Services that has the caregiver as a named part of the model.\u201d<\/p>\n Monica Moreno, senior director of dementia care navigation at the Alzheimer\u2019s Association, agreed.<\/p>\n \u201cI\u2019ve had a long history of working with families living with Alzheimer\u2019s or another form of dementia and one of the things that has struck me was the stories I would hear around what wouldn\u2019t <\/em>happen after a diagnosis,\u201d Moreno says. \u201cFamilies weren\u2019t given any guidance or information of what to do next or what to expect. They were left on their own.\u201d<\/p>\n That shouldn\u2019t happen to anyone diagnosed with a fatal brain disease, Moreno added.<\/p>\n Nexus Insights, a think tank advancing the well-being of older adults, published a 2022 paper calling for a system of care navigators similar to GUIDE.<\/p>\n Its founder, Bob Kramer, thinks GUIDE is \u201cthe most prominent and promising thing the government is doing\u201d to recognize the need for meaningful care coordination and pay for it.<\/p>\n The Alzheimer\u2019s Association and the dementia-care service Rippl also have their own Dementia Care Navigation Service<\/a> in four states: Illinois, Missouri, Texas and Washington. They plan to roll it out across the country.<\/p>\n Medicare offers free annual wellness visits that can include cognitive assessments to detect dementia<\/a>. If you\u2019re prescribed a clinical assessment to see if you have a cognitive impairment, that\u2019s covered by Medicare Part B<\/a>, though you may owe a co-pay, a deductible or both.<\/p>\n Medicare also pays for a dementia care plan from a physician or specialist for someone diagnosed with dementia. And Medicare drug plans must cover certain prescription medications that treat Alzheimer\u2019s as well as necessary PET scans.<\/p>\n But Medicare typically does not cover long-term care, help with activities of daily living.<\/p>\n Will the Biden administration\u2019s GUIDE program continue if Donald Trump is elected president?<\/p>\n Kramer thinks some potential GUIDE participants didn\u2019t sign up precisely because they didn\u2019t know the answer to that question.<\/p>\n But, he added, he\u2019s optimistic that GUIDE will finish its eight-year run no matter who wins the November election. Dementia, he says, is nonpartisan.<\/p>\n \u201cI don\u2019t think any administration is going to say, \u2018Well, we don\u2019t care about this issue,\u2019\u201d Kramer says.<\/p>\n He believes dismantling a program to help people with dementia and their family caregivers \u201cis not going to be politically tenable.\u201d<\/p>\n\nThe big need for dementia-care navigators<\/strong><\/h2>\n
How to find a care navigator<\/strong><\/h2>\n
Experts are excited about GUIDE<\/strong><\/h2>\n
The Alzheimer\u2019s Association dementia-care navigators<\/strong><\/h2>\n
GUIDE and the election<\/strong><\/h2>\n