What is dementia? Bruce Willis’ diagnosis explained

Bruce Willis’ family revealed last month 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.”

Following Willi’s dementia diagnosis, his family has continued to express their gratitude for their peers. In honour of Willis’ birthday on 19 March, his wife, Emma Heming Willis, shared an emotional message to thank fans for the the “kind” wishes.

“I have started the morning by crying as you can see by my swollen eyes and snotty nose,” she said in an Instagram Story. “I always get this message where people always tell me, ‘Oh you’re so strong. I don’t know how you do it.’ I’m not given a choice. I wish I was but I’m also raising two kids in this.”

She went on to acknowledge the grief she’s felt since her husband’s diagnosis, adding: “Sometimes in our lives, we have to put our big girl panties on and get to it. And that’s what I’m doing. But I do have times of sadness, every day, grief every day, and I’m really feeling it today on his birthday.”

Here’s what Willis’ health 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, 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.