Dementia Care Pilot Program Now Supports More Families

Medicare’s GUIDE program has a helpline, respite care and a care navigator

Sharon Jayson,

Updated October 06, 2025

AARP

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Published March 28, 2025

/ Updated October 06, 2025

Having access to a 24-hour phone line is helping caregivers of people with dementia participating in a CMS pilot called GUIDE.

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A 3 a.m. phone call to a dementia helpline turned Sharon Hall into a champion for a new Medicare pilot program called GUIDE. She is the primary caregiver for her husband, Rod Hall, 73, who was diagnosed at 62 with frontotemporal dementia, or FTD. Symptoms vary by individual but may include changes in personality, behavior and language. She called that helpline a couple of times, including in the middle of the night.

“That’s what keeps you out of the hospital,” says Hall, who lives in Suwanee, an Atlanta suburb. “He fell out of the bed and hit his head. Do we go or don’t we go to the hospital? I’m able to call 24/7 and know I will have a nurse practitioner who has [Rod’s] records, even if it’s 3 o’clock in the morning.”

Keeping people with dementia safe and avoiding visits to the hospital are among the goals of GUIDE (Guiding an Improved Dementia Experience), an eight-year pilot program launched in July 2024 by the Centers for Medicare & Medicaid Services (CMS). It expanded to more centers in July of this year.

Of the 390 programs that CMS approved for GUIDE, 330 are operating. Most sites were added this year and include large academic medical centers, hospital health systems, small group practices, community-based organizations and hospice agencies.

Remo Health, a virtual dementia care company led by neurologists and geriatricians, launched GUIDE this summer. The virtual company is collaborating with the Cleveland Clinic Medicare Accountable Care Organization (ACO).

ACOs are groups of doctors, hospitals and others in health care that coordinate patient care and manage costs. They can serve a specific geographic area and can focus on patients with a specific condition, according to CMS.

“People living close to the Cleveland Clinic may have access to a neurologist, but it may take six or more months to get an appointment. People in rural communities do not have that widespread access,” says behavioral scientist Megan Olshavsky, who leads GUIDE for Remo Health. “A lot of people do have primary care providers local to their area, but not a lot have access to a dementia care expert.”

Atlanta’s Emory Integrated Memory Care, a joint effort of Emory University and Emory Healthcare, is one of the pilot centers, and it’s where Rod Hall receives both primary and dementia care.

GUIDE also provides up to $2,500 each year for respite benefits, which can pay for in-home caregivers, overnight respite care or adult day care so caregivers can take a break. Sharon Hall says paying out of pocket for respite care got too expensive.

“Even a day center … becomes very cost-prohibitive,” she says. “A couple of years ago, he was going to a day center two days a week. That was the minimum, and it was like $85 a day.”

Help for caregivers

For the Halls and others, GUIDE aims to improve the quality of life for people with dementia and their unpaid caregivers. In addition to the helpline, families are assigned to a care “navigator” to help them find local services, such as meals and transportation. They also can get education and training. For health care providers, the GUIDE model incentivizes delivery and expansion of coordinated, high-quality and cost-efficient care.

“The ultimate goal is that this works, saves Medicare money, improves the lives of people with dementia and their caregivers, and keeps people out of nursing homes,” says Dr. David Reuben, a geriatrician and the program director for GUIDE at UCLA Health in Los Angeles.

Research by Reuben and others published in 2019 in JAMA Internal Medicine and 2020 in the Journal of the American Geriatrics Society shows that coordinating care and support for caregivers and their loved ones with dementia can lower Medicare costs while reducing emergency department visits, shortening hospital stays and delaying admission to long-term care.

Medicare and Medicaid should save money if people with dementia are able to remain at home longer, rather than move to care facilities, and if visits to the ER and hospitalizations decline. Through GUIDE, Medicare pays monthly amounts on a tiered system to health providers based on the severity of the beneficiary’s dementia, geographic area and other factors, Reuben says.

During the multiyear pilot, an independent evaluation will assess outcomes. No information is available about the evaluation process.

An estimated 7.2 million Americans 65 and older are living with Alzheimer’s dementia, according to the Alzheimer’s Association. As the U.S. population ages, cases are expected to rise to as many as 12.7 million by 2050.

Dementia has several causes. The most common is Alzheimer’s disease, but there are other types, including Lewy body dementia, Parkinson’s disease dementia, vascular dementia and FTD.

Expanding the pilot

GUIDE is offered in 47 states (all but Alaska and the Dakotas) via participating health care providers. Dr. Malaz Boustani is a geriatrician who leads GUIDE at the Sandra Eskenazi Center for Brain Care Innovation at the Indiana University School of Medicine in Indianapolis. He estimates that approximately 100,000 people are living with dementia in Indiana, with the majority living in the Indianapolis area.

“Without the GUIDE program, a lot of people with dementia will not receive evidence-based dementia care services,” Boustani says. “Their quality of life will be down, and their caregiver will burn out.”

More than 100 are enrolled and numbers are growing since the pilot began there last year, but he says the major challenge remains finding eligible patients. Patients must be enrolled in Medicaid or original Medicare — not a Medicare Advantage plan.

“The percentage of Medicare Advantage in our served population is growing even more,” Boustani says. “That’s been, unfortunately, a growing barrier to enrolling.”

A KFF report released in July shows that Medicare Advantage enrollment as a share of the eligible Medicare population jumped from 19 percent in 2007 to 54 percent this year.

To qualify, patients must have a diagnosis of moderate to severe dementia and are not living in a nursing home or receiving hospice care. There are other exclusions as well, which is why participating organizations have faced frustration, attributed to growing pains. People can’t sign themselves up or reach out to Medicare to join. They must be patients of a participating provider.

For Carolyn Clevenger, a doctor of nursing practice who leads the Emory program, enrollment isn’t what was anticipated. “It’s a disappointing 38,” she says. “I should have 400.”

She continues: “Big health systems move slowly. It took 14 months to build out the platform in the medical record. That’s been the biggest impact on the delay.”

Clevenger believes she can hit 150 by year’s end, as they’re adding about 10 participants each week, with many more pending approval.

Respite care is the No. 1 benefit cited by the participant families who can use it, she says. “We tell people, ‘You may not need respite today, but maybe you’ll need it in the future, so if you’re already in the program, you’re eligible.’ ”

So far, 77 participants are enrolled in GUIDE at OU Health at the University of Oklahoma. And there’s a wait list, says Dr. Lee Jennings, a geriatrician there. “We are committed to serving rural areas in our state and have contracted with respite care agencies all across the state to meet this need,” she says.

“GUIDE allowed us to hire an RN care navigator,” she continues. “It allows us to have that extra touch. Ultimately, it will allow us to expand our program.”

The RN dementia care navigator checks in with patients monthly, providing a service Jennings couldn’t offer without GUIDE program payments.

Caregivers weigh in

Michael Westmoreland, who lives in Indianapolis, says his older brother’s quality of life has improved since receiving support through GUIDE. “He has consistency with the people that help,” Westmoreland says. “It makes a big difference with someone with dementia that they’re the same people.”

Westmoreland’s brother has had multiple strokes over the past 15 years, beginning in his 50s. Although he lives at home by himself, paid caregivers are there 12 hours a day. The home has cameras for monitoring when caregivers aren’t around.

Indiana University’s Boustani says providing high-quality dementia care services “will improve the quality of life of people with dementia and their caregiver and may transfer some cost savings.” Research by Boustani and others on a collaborative care model for dementia and depression was part of the clinical research used for establishing the GUIDE model.

“Prior to GUIDE, there was no financial incentive to sustain and increase the services of our dementia program,” Boustani says. “Now, with GUIDE, there is financial incentive — not just to sustain our program but to grow it.” He expects to grow from 200 to 2,000 participants over the next three years.

Caregiver Erica Krebs quit her job and moved into her mother’s home in Agoura Hills, California, to care for her mother, Marta Escobar, 76. “I wish more and more people had access to this,” she says.

Editor's Note: This article was updated to describe the expansion of the program to more sites.

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Sharon Jayson is a contributing writer who covers aging, family, health care and retirement. She previously worked for USA Today and the Austin American-Statesman, and she also has written for Kaiser Health News, Time magazine and The Washington Post.