Mt. Vernon family talks about dealing with the same type of dementia as actor Bruce Willis

MT. VERNON, Mo. (KY3) - In an update to his original diagnosis last year, the family of Bruce Willis announced this week that the 67-year-old actor has a form of dementia that’s not well-known to most people.

After retiring from acting in March 2022 due to a speaking disorder called aphasia, Willis has been diagnosed with frontotemporal dementia. Willis’ family explained that because Bruce has been adamant about speaking out on important causes, they are hoping that more people will become aware of this rare form of dementia.

When Susan and Gary Gilmore of Mt. Vernon heard about Willis’ frontotemporal dementia, so named because its affects the frontal and temporal lobes of the brain, they were some of the few people familiar with the debilitating disease because Susan, a third grade teacher for over 20 years, has the same illness.

“We have noticed an increasing gap of waiting on the word and joke that we play password a lot,” said Gary. “Susan was a crackerjack third grade teacher in Mt. Vernon, and it was very unusual for her to miss a word every now and then, but there’s also some recognition issues that come with this and recall problems. For her it’s the temporal lobes on the side. About 2018 is when we noticed changes beginning and doctors told us that it is normal to lose a word now and then. But this also has to do with pattern recognition, organizing tasks and starting a story that you cannot finish. Ever.”

“Dementia is that umbrella term for any disease that changes cognition or memory,” added Kristen Hilty, a Springfield-based Care Consultant for the Alzheimer’s Association.

“Alzheimer’s is the most common type of dementia at 60-80 percent (other types include vascular dementia, Lewis body dementia, Parkinson’s, Creutzfeldt-Jakob, Wernicke-Korsakoff, Mixed dementia, normal pressure hydrocephalus and Huntington’s disease). Frontotemporal dementia is one of the more rare forms. So when someone like Bruce Willis comes forward, we really applaud that,” said Hilty.

The wide-ranging symptoms can include changes in personality and behavior, problems in speaking, understanding, reading and writing (which was Willis’ original problem) and a decline in motor skills affecting the ability to get around.

“I feel like I’m just myself,” Susan answered when asked what effect she felt the disease has had on her life.

And while the mother of three doesn’t have all the behavioral or motor skill problems listed above, frontotemporal dementia is progressive.

“At some point, when a portion of our brain atrophies, it will move over and touch its neighbor,” Gary said. “One of the most touching moments we had is when I asked her how she was doing and she said, ‘I just want to stay me.’”

“It eventually creates kind of a domino effect in the brain,” Hilty added. “And that’s why you see it start to affect other body systems as well.”

Diagnosing the disease is not easy, and just because you have problems remembering things doesn’t mean you have dementia.

“There’s memory loss that comes with aging but you’re probably able to remember the word you were trying to think of later,” Hilty pointed out. “However, with Alzheimer’s or other forms of dementia, that word just never comes back to you. Alzheimer’s usually presents itself early on with short term memory loss like forgetting where you put the keys. Frontotemporal dementia will present more with really big changes in personality or not being able to remember words or put them in a sentence. You should be concerned if you have pervasive or persistent issues where you’re not only unable to recall a word, but if you see salt on a table you call it something totally different like ‘flower.’”

“They can’t tell you when it started or where you are in the process,” Gary explained. “They can’t tell you exactly when it’s going to stop. But they can tell you for sure that the process is going on and that’s the challenge of FTD.”

Frontotemporal dementia can also start earlier in life than other types of dementia as the average age of people getting the disease is between 45-64 years old.

“About a third of the cases they believe are genetic relating to family history,” Hilty said. “There are no lifestyle changes we recommend because it’s probably an inherited disease. Unfortunately, all forms of dementia do not have a cure although there are sometimes medications that can treat symptoms. But it is important to get an early diagnosis so you can get control and power over the progression of the disease and there are many support groups out there.”

“They also worked with Susan on some speech therapy,” Gary said. “Because our brains are always changing and by using those crossword puzzles and things like that we can keep the brain strong as it fights against atrophy. Now we do everything together and being engaged with other people is helpful. We’ve made a commitment to enjoy the moments we have and keep her the special and wonderful woman that she is.”

The survival rate, though, is usually just 6-8 years.

“It prompts some very difficult discussions,” Gary said. “Nobody likes to think of that but when you see your loved one changing in small ways each and every day, you need to prepare.”

You can get more information on all forms of dementia at alz.org or theaftd.org

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