Hollywood actor Bruce Willis, who last year was forced to step away from his hugely successful career after being diagnosed with aphasia, which was affecting his cognitive abilities, has had his diagnosis amended to frontotemporal dementia, giving a clearer specification to his illness.

Aphasia causes difficulties with speech among other things, but this latest classification is associated with progressive nerve cell loss in the brain. The symptoms can include personality and behaviour changes, and problems with language and mental focus.

It chiefly affects people that are in their mid-life, somewhere between the ages of 45 and 65, so the announcement that the 67-year-old action hero has the disease has come as something of a shock.

There is no cure, or any way to slow down the progression, although there are treatments that can ease some of the symptoms. As the disease advances, patients eventually need full-time care.

His family, in making the announcement via a statement on social media, said that it was a “relief to finally have a clear diagnosis”.

Family statement of thanks and hope

Although there are no treatments as it stands right now, the family said that they hope that is something that can change in years ahead and they hoped that the inevitable media coverage that will accompany the release of the news of the star’s condition, would help to raise awareness.

They also expressed their “deepest gratitude for the incredible outpouring of love”, which was coming their way for someone so highly thought of in the industry. Their statement touched on how they knew that he would want to respond by bringing global attention and a connectedness with those who are also dealing with such a debilitating disease and help others understand how it impacts so many individuals and their families.

“Bruce always believed in using his voice in the world to help others, and to raise awareness about important issues both publicly and privately.” The message was signed by members of Willis’s family including his wife Emma Heming, with whom he has two daughters, as well as his former wife Demi Moore, and the three daughters they have together.

Diagnosis explains changes in behaviour

Bruce Willis’ diagnosis of frontotemporal dementia (FTD) is relatively rare. It is caused by a build-up of toxic proteins in the frontal and temporal lobes of the brain, which are located behind the forehead and ears, and which are thought to kill brain cells. Damage to these parts of the brain has a significant impact on language, as is the case with the aphasia diagnosis, but it also affects a persons behaviour patterns and their ability to plan anything.

Sometimes misdiagnosed

Inappropriate social behaviour, lack of judgement, and being easily distracted, as well as motor problems such as muscle weakness and tremors, are very much at the forefront of the typical symptoms of the disease. It can sometimes be misdiagnosed as a psychiatric issue, but as the symptoms worsen sufferers can experience slow or stiff movement, and loss of bladder or bowel control.

Family need to spot changes

A diagnosis is usually made after running a series of tests and eliminating other conditions. It can tend to creep up on people without them noticing it and often requires a family member or friend to pick up on subtle changes in behaviour or speech.

Expert delivers blunt explanation

Dr. Allison Reiss, who is an expert on dementia-related illnesses, explained that FTD is different from the degenerative brain disease Alzheimer’s, which affects memory, thinking, and behaviour in a serious enough way as to interfere with daily tasks. However, she said, sadly the end result with both is the same.

At its worse, the disease causes sufferers to fail to understand words any more. “They lose the ability come up with the right name for things, forgetting the name of familiar objects, often calling things like a fork a knife and such like; initially they know what they want to say, but with progression, they simply lose the meanings of words.”

Yippee-Ki-Yay…

Bruce Willis became a household name in the 1980’s and 90’s, first of all starring opposite Cybill Shepherd in the hit TV series Moonlighting, for which he won a Golden Globe, before being catapulted to stardom by playing Officer John McClane in the first Die Hard movie in 1988.

He made a further four movies in the fabulous blockbuster action film series, together with other massive features like: Pulp Fiction, The Sixth Sense, and Armageddon, with gross worldwide takings estimated at more than $5bn.

Aphasia the first sign of a problem

It was in spring of 2022 when the star’s wife Emma Heming-Willis, alongside his ex Demi Moore, announced on Instagram that the father of their children had Aphasia and as a consequence, needed to step away from the career, which as they put it, “meant so much to him.”

Best wishes sent to the star

Reaction to the latest development has seen much sympathy and best wishes sent to the superstar and his family. Actor Brian Cox, who starred in the film Red with Bruce Willis, said “He is a lovely man; very witty and a great performer”, adding that the news was “very sad”.

Aaron Paul, called Willis “such a damn legend” before adding: “Love you so much my friend!”

US singer and actress Queen Latifah turned to Instagram and posted: “God bless you my brother we love you!!! all the best.”

While actress Selma Blair, who has multiple sclerosis, simply wrote: “Sending love.”

Prominent campaigner for brain disorder patient care and research, Maria Shriver, sent a tweet which read: “My heart goes out to Bruce Willis and his family and also my gratitude for shining a much needed light on this disease.” She continued: “When people get a diagnosis it’s extremely difficult, but also for most a relief to get a diagnosis.”

In the thoughts of fans

In many ways that will be true for the Willis family, they will be pleased to get a definitive diagnosis, but nevertheless, the news for all his legion of fans is very sad and no doubt every one of them will be sending their best wishes as he battles the awful disease.