Sandi Hegeman was able to attend her son’s wedding because a Medicare trial program funded her mother-in-law’s respite care.
Hegeman’s mother-in-law, Gertrude De Cambra, has dementia and qualifies for the Guiding an Improved Dementia Experience program, an eight-year voluntary model for Medicare enrollees that provides dementia patients and caregivers with respite care, caregiver education, 24/7 access to a care team, a dementia-trained care manager and other services.
GUIDE helps the Hegemans go to work and attend other important life events.
“Both my husband and I work full time, and neither one of us are at a place where we could leave our jobs to care for her 24 hours a day, or at least during the daytime,” Hegeman said. “GUIDE helps us oversee her care better, and it allows us to be the one to do it. We really wouldn't be able to do it without some of the provisions that we've had.”
The GUIDE model is entering its third year of providing services and support to patients with dementia and their caregivers. Its purpose is to improve dementia patients’ quality of life, keep patients at home longer, and reduce caregiver burden.
In Oklahoma, OU Health is the only in-person provider of the program. As of mid-August, 128 patients are enrolled across 34 counties, according to documents provided by OU Health. It’s a fraction of the estimated 71,000 Oklahomans living with the disease and the 135,000 family caregivers responsible for providing support for their loved ones, according to the Alzheimer’s Association.
As the GUIDE program remains in its trial phase, experts are tracking data, identifying shortfalls and collecting information through participants in hopes of expanding and fully implementing the program after the trial ends.
“The GUIDE program is actually a test … like a demonstration, to see if we pay for this model of care and we implement it, can we improve outcomes,” Jennings said. “The hope is if this shows better outcomes for patients and families, then maybe it becomes part of a permanent Medicare benefit.”
As the sole provider of the in-person GUIDE model, OU Health can funnel patients who visit its Memory Care Clinic directly into the program if they qualify. At the first visit as a GUIDE participant, patients and caregivers leave with a folder outlining a care plan for the family. Inside the folder, the program explains its benefits and provides basic information about dementia and how to care for someone with the disease.
GUIDE models must include a standardized set of community resources and an interdisciplinary team that includes a dementia-trained care navigator and a physician who specializes in geriatrics. Care providers are available 24/7 through a hotline and the personal care navigator can often connect the caregiver with their physician during office hours if needed between appointments.
For caregivers like Hegeman, the information she continues to receive from their care team has been crucial in understanding Cambra’s disease.
“We've cared for kids, but we've never cared for somebody with dementia, and you don't really know all the things,” Hegeman said. “Just having a team that you can talk with and be like, ‘Hey, this is kind of what we're doing. Is this right?’ Just having that has probably helped her care in helping us get it right for her.”
Medicare provides $2,500 a year to GUIDE participants to use for respite care. That money helps Cambra receive support from a program called Seniors Helping Seniors.
Each Friday, a senior caregiver comes to the home to watch over Cambra at no cost to the family. Although respite care heavily supports the Hegeman’s care plan, Jennings found that many of their patients are not using the service. For families in rural areas, it can be hard to find a provider willing to drive out to provide respite services.
Rural families are also struggling to bring their loved ones to the clinic due to long drives and confusion for the patient. For those reasons, the clinic has increased its use of virtual care. When possible, physicians will see a family virtually to reduce the traveling burden.
“One of the gaps that we're trying to fill with our program is not just getting people a diagnosis, and not just getting them sort of medical care for dementia, but really, how do we help the caregiver take care of them when they're not with us in the clinic,” said Dr. Lee Jennings, the medical director of the GUIDE program at OU Health. “What are the needs that we can anticipate that they may need?”
Another virtual option for qualified Medicare patients is PocketRN, a virtual platform that connects patients with physicians virtually. In Oklahoma, more than 50 patients are currently receiving support through the GUIDE model via PocketRN, said Nancy Gillette, the chief growth officer of PocketRN.
The program joined the GUIDE program participant list in the second year as part of the new track. Gillette said the virtual setup allows them to reach patients from all over.
“If someone was living out in Ada or, you know, somewhere in a remote part of Oklahoma where clinicians are not living, it's very difficult to staff those areas,” Gillette said. “Not only do we have capacity to cover people all across the United States, but if you just happen to be in a rural part of America where you don't have the capacity to get on the internet, you can still have a phone call with your clinician, so you don't have a barrier to care.”
Gillette has been around caregiving from the time she was in high school when her grandmother, who had Alzheimer’s, moved in with her family. She said the virtual option is not only more cost-effective for providers, but also the most comfortable option for patients.
Researchers and caregivers alike agree that uprooting a person with dementia’s daily routine can be hard. Gillette said families seem to love scheduling appointments in the comfort of their home at a time that works for them.
PocketRN also gives families access to a 24/7 hotline and a platform with educational tools for caregivers, including training on dementia management, that can be accessed when needed.
“If it's the middle of the night and you're a family caregiver, and you have someone that has an exacerbation of their sundowning and they need redirection and you're just overwhelmed, and you don't remember what you were coached on during a visit, you have the ability to log into this training that we have created in a virtual environment, and you can take a class at any time: two in the morning, four in the morning, three in the afternoon,” Gillette said. “And what we have seen is that families are using this platform and this education tool significantly because it's really focused on the challenge that they're facing at the moment.”
Although PocketRN is a virtual provider, it still has an in-person component. The platform has home-care partners in all 50 states that can provide respite care for GUIDE participants. The main drawback is how long it can take to approve new providers.
Medicare has to background-check agencies and their owners to make sure home-care facilities providing respite care are legitimate. That process can take up to 16 weeks, Gillette said. Once it’s approved, Medicare lets PocketRN know the facility can provide care on their behalf.
Connecting with community resources for respite care was also a learning curve for the clinic at OU. To access the $2,500 for respite care, the provider must be formally contracted with the GUIDE program participant, pending Medicare approval.
“We’ve really had to work hard on contracting with those respite care organizations and making sure that they understand the GUIDE program and making sure that patients understand it, and that's a little complicated,” Jennings said. “The university health system is not used to that kind of contracting, so that's taken some learning on our end and also on their end. But I think it's the right thing to do for the patient.”
The OU Health program is still growing its partnerships with other respite community care providers and can now provide benefits to families in all 77 counties. Since the last quarter of 2025, OU Health has seen an 18% increase in active GUIDE beneficiaries, according to OU Health.
Although more patients are receiving care through GUIDE in Oklahoma, Jennings said it's not enough. To qualify, patients have to be diagnosed with dementia, be enrolled in Medicare Parts A and B, and have Medicare as their primary payer. Residing in a long-term care facility or being enrolled in PACE or the Medicare hospice benefit would exclude the patient from the program.
The most exclusionary requirement is the type of Medicare that the patient must be enrolled in, Jennings said.
“That actually excludes probably about 60% of our patients who are already in our memory care program because they have Medicare Advantage,” Jennings said. “We have a small subset of patients who have early-onset dementia, meaning they get dementia before they're 65, so they're not yet Medicare eligible. I do often wish I had some similar benefits for my Medicare Advantage patients because they need respite just as much as the fee-for-service patients.
Jennings said the program also needs to expand to help as many as possible. While Medicare backing the program has been financially advantageous and has allowed the program to hire on another care navigator, there is still a gap in providers compared to patients.
“In Oklahoma, we have a real capacity issue,” Jennings said. “We don't have enough geriatricians or neurologists or geriatric psychiatrists and that's a hard fix. We're never going to have enough specialists to take care of the number of people experiencing cognitive concerns as they age.”
There is now a waitlist for the program and, unfortunately, patients entering the list often need immediate help, Jennings said. For Cambra, she was able to enter the program without joining a waitlist, but she still had to wait a couple of months while her evaluation was processed.
Jennings and other providers are hoping to address any shortfalls if GUIDE is fully implemented beyond the trial period. The hope is that it can expand to reach more patients, whether by hiring more physicians or including other Medicare or insurance plans.
In the meantime, both PocketRN and OU Health providers are tracking key data to measure the model's effectiveness. Both providers are gathering caregiver burden scores and tracking patient quality of life.
In its short trial period, Cambra celebrated her 80th birthday at the Memory Care Clinic. She shared this memory with her team and her family caregivers because of the GUIDE program. Without it, Hegeman said she doesn’t know if she could’ve adapted to caregiving.
“It’s really helped us since we were new to caregiving to have a better understanding of her condition, of what to expect and kind of what's to come,” Hegeman said. “It kind of helped us prepare a little bit better and just make sure that we are providing the things that she is needing.”
Oklahoma Watch, at oklahomawatch.org, is a nonprofit, nonpartisan news organization that covers public-policy issues facing the state.
