Frontotemporal dementia: What we know about Bruce Willis’ ‘rare’ condition

Click to play video: 'Health Matters: What is frontotemporal dementia?'
Health Matters: What is frontotemporal dementia?
WATCH: Health Matters: What is frontotemporal dementia? – Feb 17, 2023

Nearly a year after announcing his battle with aphasia, Bruce Willis’ family disclosed last week that the 67-year-old actor has been diagnosed with one of the rare forms of dementia, known as frontotemporal dementia (FTD).

Approximately five to 10 per cent of all dementia cases are FTD, according to the Alzheimer Society of Canada, but it makes up about 20 per cent of all young onset dementia diagnosed in those under 65.

“It’s not an uncommon diagnosis, but it is one of the rare forms of dementia,” said Cathy Barrick, chief executive officer at the Alzheimer Society of Ontario.

“Bruce Willis is in his prime… And we do see this kind of diagnosis in the earlier years as opposed to other types of dementia which tend to happen. Age is the biggest risk factor, but not for this particular type,” Barrick told Global News.

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Bruce Willis diagnosed with dementia 1 year after battling with aphasia

What is frontotemporal dementia?

FTD is an umbrella term for a group of rare disorders that most often affect the parts of the brain associated with personality and behaviour, the Alzheimer Society of Canada explains on its website. It can cause changes in behaviour, difficulty with speech and movement, as well as memory loss.

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“This particular form of dementia primarily attacks the frontal temporal lobe… that governs your behavior and judgment,” said Barrick.

“So sometimes the symptoms associated with it can be quite disturbing both to the person who is living with it and the people around them.”

Unlike Alzheimer’s disease, however, people with frontotemporal dementia often remain conscious of time (for example, what year it is) and memory is not of concern in the early stages, according to the Alzheimer Society of Canada.

The organization also said that in the later stages, general symptoms of dementia can arise, including confusion and forgetfulness. Motor skills are lost and swallowing difficulties occur.

How soon do symptoms appear?

Some types of dementia progress more slowly than others and it differs from person to person, according to Barrick.

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When it comes to experiencing changes in behaviour, people with FTD may over time display a loss of interest in personal hygiene, a tendency to become easily distracted, or be unable to wait to go to the toilet, according to the Alzheimer Society of Canada.

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People may also speak less, have difficulty finding the right words, stutter, or repeat what they’ve already said to others, the organization adds.

“The progression of the disease can be anywhere from two years to 20 years… so there’s a lot of variation in how people experience it,” said Dr. Joshua Armsrong, research scientist at the Alzheimer Society of Canada.

Diagnosis and treatment

According to the Alzheimer Society of Canada, there are measures that can assist doctors in diagnosing the disease, including cognitive tests, knowing more about the person’s health history, and brain imaging like an MRI, for example.

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But Armstrong said diagnosing FTD is not easy, especially because it can be similar to conditions like depression or stroke and there’s not a lot of information on it.

“It’s hard to diagnose…and to identify those individuals and look at their health data over time to understand what (it) maybe increases the risk of developing it,” he said.

And since it’s also somewhat rare, it’s hard to find individuals with FTD to observe and study, he added.

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“We don’t know what leads to it… we definitely could benefit from a lot more research to better understand how it develops.”

There is also no known cure and no effective way to slow the progression of frontotemporal dementia, the Alzheimer Society of Canada states on its website.

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But there are different ways and some medications that people with FTD can take, which can treat some of the symptoms, said Armstrong.

“When it comes to language issues, you might be able to talk to a speech-language pathologist to help you get some strategies to deal with those challenges,” he added.

However, those strategies would only be helpful up to a point where the generic degeneration is not too severe.

“At that point… you won’t be able to rely on those types of strategies, but they can help in the early stages,” said Armstrong.

Stigma and awareness

Raising awareness about FTD is critical to reducing stigma and bringing attention to the importance of investing in more research to better understand it, according to both Barrick and Armstrong.

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A lot of people may shy away from reaching out for help or a diagnosis because of fear or because of the stigma around mental health, said Armstrong.

But with Bruce Willis sharing his story, more people will know that this disease exists and what the symptoms might be, he added.

Barrick agreed.

“It will help people (to) start talking about it… others who are following in this path can benefit from the increased awareness and research… So it’s a very sad story, but he (Bruce Willis) is doing a really incredible thing by sharing it with the world,” Barrick said.

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Barrick said it’s important for people to realize that FTD can happen to anyone so workplaces and society in general need to be more accepting of people who have it.

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“People who are in the early stages actually can be still very productive members of society… we don’t want them to have to withdraw as they start to show symptoms and have some struggles,” said Barrick.

“Maybe if employers and family members just understood people’s limitations and that maybe they may have days that are better than others, people can still really actively participate and contribute. And so overcoming that stigma is really, really important,” she added.

— With files from Michelle Butterfield 

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