W. Va. considered a ‘dementia neurology desert’ in new Alzheimer’s Association report

CHARLESTON — At 51 years old, the Rev. Clare Sulgit lives out her calling as an ordained minister. A fourth-generation United Methodist pastor, Rev. Sulgit pastors St. Mary’s United Methodist Church in St. Mary’s, W. Va.

But she noticed last summer she was having difficulty articulating words as she delivered her sermons. For a while, she thought it was due to stress from COVID-19. “I thought I was just dealing with the grief and the frustration and all the things that have come with that,” Rev. Sulgit said.

But the problems persisted, and she decided to go to her doctor. She asked for a referral to the Rockefeller Neuroscience Institute Memory Health Clinic at West Virginia University.

After a series of tests, she got her diagnosis: Mild Cognitive Impairment due to Alzheimer’s disease. Not only is she young, but she also didn’t know she was ill.

“I really didn’t expect there to be anything, so I was surprised when there was,” Rev. Sulgit said. “It’s been helpful to have some answers,” she said.

The Alzheimer’s Association just released its 2022 Alzheimer’s Disease Facts and Figuresreport which unearthed challenges both doctors and the American public face in understanding and diagnosing mild cognitive impairment (MCI), which is characterized by subtle changes in memory and thinking. An estimated 10 to 15 percent of individuals with MCI go on to develop dementia each year. 

In a survey, 75% of primary care physicians say they are on the front lines of providing care for patients with MCI. However, more than three-quarters of PCPs (77%) report MCI due to Alzheimer’s being difficult to diagnose, and half (51%) do not usually feel comfortable diagnosing it.

Accurate diagnosis of MCI due to Alzheimer’s disease, prior to the development of dementia, is crucial in identifying individuals who might qualify and benefit from early treatment. Since therapies targeting the early stages of Alzheimer’s have been approved and more are in development, early and accurate diagnosis will help determine eligibility for these treatments.

“Symptoms like changes in memory and thinking can be a red flag to the diagnosis of cognitive impairment. We’ve got to catch these symptoms as soon as possible,” said Sharon Covert, Executive Director for the Alzheimer’s Association West Virginia Chapter.

West Virginia, like many other states, greatly lacks dementia specialists who can help with diagnosis. In fact, West Virginia is one of 20 states in the report referred to as a “Dementia Neurology Desert,” a phrase coined by other researchers. According to the report, West Virginia would have to increase the number of geriatricians in the state by 418.8% to meet the expected demand of patients in 2050.

“We do not have enough neurologists in the state to take care of neurological disorders in general and much less a specialist within neurology who does behavioral or cognitive neurology and we are never going to have enough of them,” said Dr. Marc W. Haut, Professor and Director of the Memory Health Clinic at the Rockefeller Neuroscience Institute at West Virginia University. “It’s significant because many patients are not getting the kind of specialty care that they need and that means sometimes the diagnosis is missed, it could be more treatable, or that something that could be done is not done to improve quality of life outcomes,” Dr. Haut said.

Dr. Haut said one reason is because existing primary care physicians do not get a lot of instruction on MCI and dementia while in medical school. “What I will tell you having taught these courses for 30 years for the medical students, I taught in what was called the neurobiology course. They got one lecture from me for one hour on MCI and dementia,” Dr. Haut said. “That’s it. That’s what I could cover in two years of classes all day long. That’s what they would get…The problem with that is not that people didn’t think that was important. There are so many things that are important you just can’t teach depth at that level.”

Through the Alzheimer’s Association’s Health Systems work, the Association offers a Project ECHO dementia care for primary care education series, where the Association pairs primary care providers with dementia care experts throughout the country. WVU has adopted the Alzheimer’s Association dementia care Project ECHO curriculum into their own Project ECHO program for providers throughout West Virginia.

While Rev. Sulgit originally went to her primary physician with her concerns, she wanted the testing to be done at WVU’s Memory Health Clinic. One reason Rev. Sulgit wanted to get checked out is because her father was diagnosed with Frontotemporal dementia in his early 50s.

She said she is glad she knows her diagnosis. Her advice to others: if you have concerns, go to the doctor. “As you are able, find out now because it gives you more time to consider what your options are and to make a plan for your care,” she said.