JACKSON — Before Melissa Dever can talk with people about Alzheimer’s support services, she knows there are a couple of questions she has to answer.
“One of the first questions people want to know when you interact with them is ‘who are you? Where are you from? Who are you related to? All of that matters,’” said Dever, an Alzheimer’s Association program director who works with Appalachian communities in southeast Ohio. “I drive a tractor, I am out in the hayfield, I do all the things that they do to let them know I am relatable.”
“We do a lot of ‘front-porch sitting’ because you are not just going to walk into someone’s home and get down to business,” she said.
According to the Rural Health Information Hub, 2.3 million Ohioans live in rural areas, and more entities are focusing on the impact of Alzheimer’s and dementia in rural Ohio.
This year, the Alzheimer’s Association Greater Cincinnati Chapter will be holding community forums in Athens and Jackson counties to understand the needs and how best to provide a higher level of Alzheimer’s education and support services. For rural families living in communities with limited health resources, that often means fewer people getting a formal Alzheimer’s diagnosis and less access to dementia care and support.
The first forum will be virtual on March 25, at noon, and more information can be found on Facebook page: Southeastern Ohio Branch of the Alzheimer’s Association.
“In rural communities it’s quite interesting because as a physician you have to put your big pants on because basically you’re it,” said Dr. Douglas Woo, one of the few neurologists in Athens County. “It’s a lot harder to get to specialists.”
Woo added, “It’s harder for people to carve out time from work and people have to wait until the end of the month just to see me and I am just down the street.”
Dr. Jeffrey Wing, Assistant Professor of Epidemiology at The Ohio State University, said previous research studies indicated that Alzheimer’s is more prevalent in urban areas – areas where dementia specialists are more likely based.
But based on new research, he is starting to think that researchers don’t know the full extent of the disease in rural communities. For example, U.S. News & World Report found that Jackson County, Ohio is one of the top counties in the nation with the highest Alzheimer’s death rates. It ranked 25th. And a study co-authored by Dr. Wing found that within Ohio’s Appalachian country, the number and proportion of people who have Alzheimer’s dementia is 2–3 percent higher compared to rural non-Appalachian counties.
“I think right now the idea that there may be geographic variation is important for everybody to be thinking about,” Wing said.
Dever sees the issues first-hand: Lower number of specialists, few adult day care centers, families lacking insurance, lack of knowledge about the disease.
People who live in some parts of Southeast Ohio drive more than two hours to get to dementia specialists in Columbus and Cincinnati.
“It’s frustrating to me as a professional that we don’t have many geriatric physicians in our areas and neurologists in our areas much less an actual dementia center,” she said.
“I feel very passionate about this because the people who live here feel that people in rural areas get left out and forgotten about sometimes,” Dever said.
The problem of too few specialists exists throughout Ohio. According to the Alzheimer’s Association 2020 Alzheimer’s Disease Facts and Figures report, in 2019 there were 163 geriatricians in Ohio. By 2050, the state will need 537 geriatricians to serve 10 percent of those 65 or older, which is a 229 percent increase.
To dramatically increase the accurate and timely diagnosis of people with Alzheimer’s and other dementia, and to significantly increase the number of people who receive affordable, high-quality care and support, the Alzheimer’s Association is pairing dementia experts with physician practices to raise their level of knowledge. Through Project Echo®, physicians can present cases and get coaching from a multidisciplinary clinical team from around the country.
Dr. Woo, who has also worked in Lancaster and Marion, said his specialty is multiple sclerosis, but because of the lack of dementia specialists in Athens, “you basically have to learn a lot on the fly because you may be outside of your comfort zone.” He said about 10-20 percent of this new patients have a diagnosis of Alzheimer’s or dementia. Some drive to Columbus to go to the Memory Disorders Clinic at Ohio State.
Dever said for those without insurance it is even harder to get dementia care. “We may get a call from a son or daughter who is concerned about mom or dad... sometimes we hear they haven’t been to the doctor in 20-30 years or since they had their last child. Some of them have not had routine care so we are just helping them get established somewhere with a primary care physician to get the ball rolling.”
MaryJo Moorhead, who leads the Alzheimer’s caregivers support group in Cambridge, Ohio, population 10,300, said she used to take flyers to grocery stores trying to get people to participate. A former caregiver herself, she knows the stress of caring for a loved one with Alzheimer’s in a smaller community. “In Appalachia we are a hard sell. This is a culture where people don’t ask for help, don’t like to say there is a weakness there,” she said.
She said she tries to keep at least three regulars in her support group. “I am fighting this disease however I can. If I can advocate, if I can be an educator, I am willing to do it,” Moorhead said.