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The Independent UK
The Independent UK
Lifestyle
Amber Raiken

What is frontotemporal dementia? Bruce Willis’ family announces actor’s condition after aphasia diagnosis

PA Archive

Bruce Willis’ family has revealed that he has frontotemporal dementia (FTD), one year after he had been diagnosed with aphasia.

The actor’s family shared that his condition progressed in a statement with the Association for Frontotemporal Degeneration. “We now have a more specific diagnosis: frontotemporal dementia,” they wrote. “Unfortunately, challenges with communication are just one symptom of the disease Bruce faces. While this is painful, it is a relief to finally have a clear diagnosis.”

As they called the condition a “cruel disease”, they explained that “FTD is the most common form of dementia” and “much more prevalent than [people] know”. They went on to note that while there are “no treatment for the disease”, they hope that can “change in the years ahead”.

“As Bruce’s condition advances, we hope that any media attention can be focused on shining a light on this disease that needs far more awareness and research,” they added. “Bruce always believed in using his voice in the world to help others, and to raise awareness about important issues both publicly and privately.”

This announcement comes nearly one year after the Die Hard star’s family revealed that he was diagnosed with aphasia, a brain condition. In March 2022, they said he was “stepping away” from acting, as he had been “experiencing some health issues” which were “impacting his cognitive abilities”.

Here’s what Willis’ progressed condition is and everything you need to know about  frontotemporal dementia.

What is FTD and how common is it?

FTD “represents a group of brain disorders caused by degeneration of the frontal and/or temporal lobes of the brain,” as noted by The Association for Frontotemporal Degeneration. There are  many different subtypes of FTD, including Primary Progressive Aphasia (PPA), which is a disorder that impacts how a person speaks.

It is also the most common type of dementia for people under the age of 60. However, it is both “lesser common and lesser known” in the US, with an estimate of “60,000 cases”. The Association for Frontotemporal Degeneration also acknowledges that FTD is has been misdiagnosed for other neurological conditions, such Parkinson’s disease or Alzheimer’s disease.

The condition takes “an average of  3.6 years to get an accurate diagnosis” of it.

What are the causes and how to diagnose it?

Although the cause of FTD isn’t known, “researchers have linked certain subtypes of FTD to mutations on several genes”, as reported by John Hopkins Medicine. People with the disease may also have “tiny structures” in their brain cells “that contain an abnormal amount or type of protein”.

The medical site notes that signs of FTD can be noticed through “subtle changes” in people’s “behaviour or language skills”. While there isn’t a test to diagnose the disease, blood tests and physical exams can be done to “rule out other conditions that cause similar symptoms”.

What are the symptoms of the condition?

Although symptoms of FTD vary for everyone, John Hopkins Medicine says that they can “start gradually and progress steadily”. In some cases, they can progress rapidly.

The most common symptoms range from behavioural changes, including “swearing, stealing, increased interest in sex, or a deterioration in personal hygiene habits”. Some other behaviours can include being “socially inappropriate or impulsive”.

Other personality changes can be an inability to understand your language, with “difficulty naming objects, expressing words, or understanding the meanings of words”.

Some people with the condition may have physical symptoms, including “tremors, muscle spasms or weakness, poor coordination and/or balance, and difficulty swallowing”.

How to cope with FTD as there are no treatments?

There currently isn’t a cure for FTD. However, according to Mayo Clinic, certain medications can be used to manage the condition. Some antidepressants, like trazodone, and antipsychotic medications, like olanzapine and quetiapine,  “may reduce the behavioural problems associated” with the disease.

However, the medical site urges patients to use the antipsychotic medications “with caution,” as people with dementia are at risk of side effects, “including an increased risk of death”.

For some people who have language difficulties, they could also go to speech therapists “to learn alternate strategies for communication”.

In the statement, signed by Willis’s wife Emma Heming Willis, ex-partner Demi Moore and his five children, the family acknowledged how the Unbreakable star wants his diagnosis to bring “global attention” to FTD.

“We know in our hearts that – if he could today – he would want to respond by bringing global attention and a connectedness with those who are also dealing with this debilitating disease and how it impacts so many individuals and their families,” they explained.

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