Dementia Care Pilot Program Gets Off the Ground and Families Feel the Support

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 tier system to health providers based on the severity of the beneficiary’s dementia, geographic area and other factors, Reuben says.

More than 6.9 million individuals in this country are living with dementia, according to an August report from the National Institutes of Health. As the U.S. population ages, cases are expected to rise to near 14 million by 2060. Dementia has several causes; the most common is Alzheimer’s disease. But there are other types, including Lewy body dementia, Parkinson’s dementia, vascular dementia and frontotemporal dementia.

Expanding the pilot

GUIDE is offered in 45 states (all but Alaska, Kansas, Mississippi and the Dakotas), via health care providers participating in the pilot. Geriatrician Malaz Boustani, M.D., 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 currently living with dementia in Indiana, with the majority living in the Indianapolis area. Boustani says GUIDE could increase the numbers served, but program eligibility would determine services through GUIDE.

“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.”

He says the major challenge is finding eligible patients because they must be enrolled in Medicaid or original Medicare — not Medicare Advantage. The latest CMS data shows that more than half of Medicare beneficiaries are enrolled in Medicare Advantage (MA).

To qualify, patients must have a diagnosis of moderate to severe dementia and not live in a nursing home or receive 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.

Carolyn Clevenger, a doctor of nursing practice who leads the Emory program, says she’s enrolled 35 people with dementia since July, fewer than she’d like due to approval delays. But she’s optimistic her GUIDE program will have 350 enrolled by year’s end.

“We’re willing to endure some growing pains because we believe everybody should get better dementia care than what they’re getting,” Clevenger says. 

“GUIDE allowed us to hire an RN care navigator,” says geriatrician Lee Jennings, M.D., of the University of Oklahoma Health Sciences Center in Oklahoma City. “It allows us to have that extra touch. Ultimately, it will allow us to expand our program.”

Caregivers weigh in

Michael Westmoreland, of 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, age 66, has had multiple strokes over the past 15 years. Although he lives at home by himself, paid caregivers are there 12 hours a day. Westmoreland can quickly be at his brother’s place about 7.5 miles away, but his sister lives in Muncie — at a distance of about 55 miles. The siblings keep tabs on their older brother with cameras when caregivers aren’t around.

For Westmoreland, GUIDE gives him peace of mind and a sense of financial security because of the respite care benefit. “We’re having to pay out a lot and we paid out a lot in the past,” he says. “It’s a small amount of money, but anything helps.”

Boustani, in Indianapolis, 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 among 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.

During the pilot, an independent evaluation will assess outcomes, but no information was available at press time about the evaluation’s status or its measures.

Caregivers like Erica Krebs say there are benefits from GUIDE every day. Two years ago, she quit her job and moved into her mother’s home in Agoura Hills, California, to care for her mother, Marta Escobar, who turns 76 on April 15.

Her sister had lived with Escobar during the previous five years. Now, Krebs says, her mother’s latest CT scan shows she’s at the last stage of moderate dementia and entering the severe stage.

“The GUIDE program is like the middleman to help me with the daily challenges I face with my mother,” she says. “Sometimes she wants to leave the home. How do I deal with this? Speaking with personnel with the GUIDE program gives me and my sister suggestions that if we try this, it maybe will work better.”

Even though Krebs admits she was skeptical about GUIDE’s effectiveness, she’s now “super grateful” for the support, adding, “I wish more and more people had access to this.”