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Alzheimer's Association’s Brain Bus comes to North Central Florida

Photo courtesy of the Alzheimer's Association
Photo courtesy of the Alzheimer's Association

It’s a Thursday afternoon in Gainesville and there’s a 40 foot long purple bus parked inside the lot of a busy Publix grocery store.

Rob Harris yells, “Hi, come on in.”

This is the Brain Bus and it’s run by the Alzheimer’s Association. Rob Harris drives the bus up and down the entire state of Florida giving out information on Alzheimer’s and dementia to people looking for help.

The bus will be stopping in Clay and Union counties on Monday and in Alachua, Marion, Bradford, Columbia, Gilchrist, Levy and Suwannee counties throughout March. Details for these stops and the bus’s upcoming schedule of stops in North Central Florida are available here.

“This is my office away from home, as you can see,” said Harris.

His office is filled with pamphlets telling people about the early warning signs of dementia and how to access their 24/7 helpline. If someone thinks they might have memory issues, he’ll look up the nearest place for them to get a memory test. He even has two robotic pets for people with Alzheimers and dementia - Mike the dog, and Georgette the cat.

“I like Mike and everything because I am a dog person, but he just barks and wags his tail. But Georgette, she'll get going here, and she'll roll over, raise her paw,” said Harris.

And he listens. On any given day, he might be talking to someone who has the disease, or who thinks they or their loved ones might have it.

“I have boxes of Kleenex. We cry. If it's real depth, I'm a hugger and I'll try to hug someone if they want one,” said Harris.

Tierra Tomlin spots the bus on her way to work. She thinks her father might have Alzheimer’s.

“He’s just saying the same things over and over, forgetting things, just changed and is a different person,” said Tomlin.

She’s the sole decision maker for her parents and her brother, who’s deaf. She wants to get her dad to see a doctor but she’s having a hard time getting support for that at home.

“How's mom dealing with it? Is she in denial or does she notice something?” Harris asked.

“Denial is a river in Egypt,” said Tomlin.

Photo courtesy of the Alzheimer's Association.
Photo courtesy of the Alzheimer's Association.

Later on, a retired nurse pops in thinking she might have Alzheimer’s. She’s waiting for the results of a memory test and she hasn’t told anyone yet. The only person she trusts to take care of her is her grandson but he’s only 17.

Harris says he hears stories like these all the time. He’s been driving the Brain Bus for the last seven years, with a focus on getting information out to people living in diverse and under-resourced communities.

“Someone out in Alachua County, they're not going to go into a big city just to find out information. They'll put it off. That's why we go to the rural communities,” said Harris.

Harris is on his way back from a stop in Bradford County, one of many rural areas in north central Florida, where it can be difficult to find a neurologist nearby.

“To have the big rural communities kind of all pushed up into the northern area of the state, that makes it challenging all the way around,” said Donna Lee, who lives in Gilchrist County.

She’s the Alzheimer's Association’s program manager for North Central Florida and she said seeking specialized care in a different county or city can feel daunting and difficult for some people.

“They have seen the same set of doctors, the same local practice and they just don't expand more than that unless somebody is truly ill and they have to go into the big city to get to a hospital in a significant crisis situation. So what happens is they wind up essentially cutting themselves off from information,” said Lee.

A lack of access to doctors who have time to screen and treat for Alzheimer’s is one of many reasons why people in rural areas here and across the country are at least twice as likely as those in urban areas to develop Alzheimer’s and dementia.

“It’s just a vicious circle,” said Lisa Wiese, an associate professor of nursing at Florida Atlantic University. She studies Alzheimer’s detection and prevention in rural areas.

She said there are many reasons why people living in the countryside have higher risk. To name just a few of them, people in rural areas tend to be older. They’re more likely to be smokers. And they’re more likely to be isolated and have less access to formal education and continuing education, which can lead to cognitive decline.

“It is such a prevalent and overwhelming disparity living in a rural area,” said Wiese.

And then there are the hospital shut downs. According to data collected by the University of North Carolina, Florida has the second highest number of rural hospital closures in the country.

In 2020, two hospitals in North Central Florida closed down, Shands Live Oak and Shands Starke. Because of that, Donna Lee wonders how quickly new breakthrough medication could even get disseminated to people in rural areas.

“Without the presence of these, of these rural hospitals, without the presence of these specialized providers, the information may not get there timely,” said Lee.

But for right now, there’s still a big focus on just getting the word out so people can get tested and screened. That’s why Lee says programs like the Brain Bus are important.

“That interaction helps to bridge the gap. It helps to calm fears. It helps to get people in the right conversations and not shy away from it. So many families live in denial until they get to the point that the presence of Alzheimer's or dementia is so prevalent. There is no denying it,” said Lee.

Back at the Brain Bus, Rob says he’s just happy to help.

“They see a big purple bus and I explain what we do and how we're here to help and they go, ‘I wish I would've known this when I was going through it with my dad or my mom’. That's why we're out here,” said Harris.

If you or someone you know is dealing with Alzheimer’s or dementia, you can reach the Alzheimer’s Association helpline 24/7 at 1-800-272-3900.

Áine Pennello is a multimedia reporter and Morning Edition news anchor for the College’s Innovation News Center. She has a background in video news and documentary and most recently worked at WCBS Newsradio in New York City covering local news and the tri-state area. She has also reported internationally, freelancing from Paris and Berlin during the Syrian refugee crisis. During the Syrian Civil War, Pennello reported from the Golan Heights while on a reporting grant from the International Center for Journalists.