An MRI image of brain showing area of Alzheimer patient. (Photo by GSO Images via Getty Images)
CHARLESTON — Working for the Alzheimer’s Association, Beth Sulkowski has heard the same story many times over the years: People who receive a dementia diagnosis are sent on their way with a prescription and a follow-up appointment in six months.
“When it comes to something so progressive and so far-reaching in terms of how it impacts day-to-day life, that kind of medical care is not enough to equip families for the journey that they’re going to go on,” said Sulkowski, spokesperson for the association’s South Carolina chapter.
In July, Charleston’s Medical University of South Carolina and CareConnectMD, an organization of health care providers focused on elderly and medically complicated patients, will offer an antidote to that problem using a national Medicare program meant to give patients more extensive care by paying for services their insurance previously hadn’t covered.
In 2021, the most recent data available, nearly 123,000 people in the state had been diagnosed with Alzheimer’s disease or another form of dementia, according to a report released in September by the Department on Aging. As current residents age and retirees continue flocking to the state, that number is only expected to increase, according to the report.
Patients will be able to receive services at MUSC’s flagship Charleston hospital, as well as one to-be-determined regional hospital. The program will start by hiring two designated providers, with the goal of helping 500 patients in the first year, chosen based on referrals from primary care doctors who believe their patients would benefit from the program.
The care model, called Guiding an Improved Dementia Experience, or GUIDE, changes the way doctors are paid for appointments. Instead of reimbursing the hospital for patient visits, Medicare will pay a lump sum using federal money so that doctors can spend as much time as needed with a patient without worrying about cost, said Nicholas Milano, a neurologist and director of MUSC’s SC Alzheimer’s Network program.
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Patients pay nothing for the federally funded program. MUSC applied to host it and was one of nearly 400 hospitals and health care groups chosen to implement it nationwide.
“You have dementia care navigators that aren’t passively waiting for the patient to call,” Milano said. “They’re actually calling the patient and checking in on them on approximately a monthly basis, making sure everything is going smoothly.”
Caregivers will also receive more support under the program. The GUIDE Model will give hospitals funding to hire patient care navigators, who will walk patients and their families through various questions outside of the diagnosis itself. That includes explaining safety concerns that come with dementia, connecting caregivers with other resources in the community and helping with the emotional burden of caring for someone, Milano said.
That’s important for caregivers who are grappling with a major life change, Sulkowski said.
Nearly a third of the 219,000 people caring for a person with Alzheimer’s in the state reported experiencing depression this year, according to the Alzheimer’s Association.
“I think it’s going to make it much less stressful to navigate the health care maze,” Sulkowski said. “Too often, people with Alzheimer’s and their caregivers pretty much have to fend for themselves in a really complex system where their needs are constantly changing and you don’t know what you need until you need it.”
Under the model, what was once a one-hour evaluation to diagnose a patient and write a prescription will last closer to three hours, Milano said. During that time, a doctor can walk through the medical process and a care navigator can go through the more social and emotional aspects of care, Milano said.
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Many newly discovered treatments for Alzheimer’s and other forms of dementia require a doctor to catch the disease early and begin treating it as soon as possible. By making specialists more accessible and having someone to guide families through treatment, this program could help more people get care sooner, Sulkowski said.
“The more you know and the more that you don’t have to go and figure out for yourself, the more families are able to focus on care solutions and quality of life in that really valuable time that they have with their loved ones,” Sulkowski said.
The program is similar to the South Carolina Alzheimer’s Network, which MUSC began in August to help people with a range of cognitive impairments. While the GUIDE Model will focus on people diagnosed with dementia, a general term rather than a specific brain disease, the Alzheimer’s Network is also available for older adults experiencing more mild memory loss and cognitive concerns, Milano said.
If a patient receiving care through the Alzheimer’s Network needs more advanced care, or if their cognitive issues advance to dementia, the doctors can then refer them to the GUIDE Model, he added.
“This is now raising the bar for dementia care to best practices,” Milano said.
If the pilot program goes well, MUSC hopes to continue expanding both programs, Milano said.
Hiring more care navigators could continue to increase the hospital system’s capacity, and virtual options offered through the Alzheimer’s Network could reach people who don’t have a hospital nearby. For the time being, MUSC is making plans for the program’s launch July 1.