Medicare’s GUIDE program helps folks with dementia

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 and their family caregivers.

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.

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.

Medicare reimburses GUIDE participants for their services—$65 a month to $390 a month, depending on the complexity of care for the person with dementia. Medicare beneficiaries don’t have to pay a nickel.

The big need for dementia-care navigators

This type of guidance is sorely needed.

A 2024 Alzheimer’s Association survey 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.

“At the point in time when you need a care navigator, it’s usually when your fantasy of the Medicare fairy is dispelled. You learn there is no Medicare fairy. The Medicare fairy is you,” says Lindsay Goldman, CEO at Grantmakers in Aging.

Aside from dementia-care navigation, GUIDE participants—such as medical groups, hospitals, senior living communities and home health care agencies—can also provide free respite care valued at up to $2,500 for caregivers of people with moderate or severe dementia.

This lets those caregivers get a break from what can be mentally and physically draining assistance.

“Respite care has been shown to be an important part of sustaining caregivers,” says Mollie Gurian, vice president of policy and government affairs for LeadingAge, an association of nonprofit providers of aging services.

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.

How to find a care navigator

People in Traditional Medicare, also called Original Medicare, can now look for GUIDE program participants in the database on the Centers for Medicare and Medicaid Services site or by calling Medicare’s toll-free number, 800-633-4227. In early 2025, the Alzheimer’s Association plans to launch a searchable version on its website.

“A 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,” says a spokesperson for the Centers for Medicare & Medicaid Services. “Caregivers may also contact GUIDE participants on behalf of an individual with dementia or whom they suspect to have dementia.”

GUIDE is not available to people in nursing homes or hospice or with Medicare Advantage plans from private health insurers, though those alternative plans can offer dementia care navigation on their own.

So far, there are only 96 GUIDE participants—from places like Northwell Health, 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.

The number is low because GUIDE is initially just for trained professionals who are already providing dementia-care navigation.

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 Foundation, MedStar Total Elder Care and Stanford Health Care.

About one-third of the navigators will be in rural or urban areas representing communities with low socio-economic status.

Experts are excited about GUIDE

While the number of GUIDE participants isn’t enormous, the existence of the program has energized experts in dementia and caregiving.

“What’s exciting about GUIDE is that it incentivizes a different kind of care—and payment for that care. This is comprehensive and focused on both the medical and non-medical needs of a person living with dementia,” says Snyder, of the John A. Hartford Foundation.

“Someone in a GUIDE program can expect valuable assistance that’s often absent today, like respite care, a home visit to assess safety risks or connections to community-based programs that offer transportation and meals,” she added.

This kind of care has been proven to delay or prevent hospital stays, emergency room visits and nursing-home residencies.

Nursing home stays are the biggest source of out-of-pocket costs for people with dementia—the national median cost a private room in one is $116,800, according to the Genworth Cost of Care Survey.

GUIDE is “very significant,” says Gurian, of LeadingAge. “It’s the first model from the Center for Medicare and Medicaid Services that has the caregiver as a named part of the model.”

Monica Moreno, senior director of dementia care navigation at the Alzheimer’s Association, agreed.

“I’ve had a long history of working with families living with Alzheimer’s or another form of dementia and one of the things that has struck me was the stories I would hear around what wouldn’t happen after a diagnosis,” Moreno says. “Families weren’t given any guidance or information of what to do next or what to expect. They were left on their own.”

That shouldn’t happen to anyone diagnosed with a fatal brain disease, Moreno added.

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.

Its founder, Bob Kramer, thinks GUIDE is “the most prominent and promising thing the government is doing” to recognize the need for meaningful care coordination and pay for it.

The Alzheimer’s Association dementia-care navigators

The Alzheimer’s Association and the dementia-care service Rippl also have their own Dementia Care Navigation Service in four states: Illinois, Missouri, Texas and Washington. They plan to roll it out across the country.

Medicare offers free annual wellness visits that can include cognitive assessments to detect dementia. If you’re prescribed a clinical assessment to see if you have a cognitive impairment, that’s covered by Medicare Part B, though you may owe a co-pay, a deductible or both.

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’s as well as necessary PET scans.

But Medicare typically does not cover long-term care, help with activities of daily living.

GUIDE and the election

Will the Biden administration’s GUIDE program continue if Donald Trump is elected president?

Kramer thinks some potential GUIDE participants didn’t sign up precisely because they didn’t know the answer to that question.

But, he added, he’s optimistic that GUIDE will finish its eight-year run no matter who wins the November election. Dementia, he says, is nonpartisan.

“I don’t think any administration is going to say, ‘Well, we don’t care about this issue,’” Kramer says.

He believes dismantling a program to help people with dementia and their family caregivers “is not going to be politically tenable.”

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