Bruce Willis’ rare frontotemporal dementia condition explained

As well as every health update his family has provided…

Bruce Willis – known for his roles in Die Hard, Pulp Fiction and The Sixth Sense – retired from acting in March 2022, after he was diagnosed with aphasia: a language disorder that affects a person’s ability to communicate.

The 68-year-old’s family then released a statement in February 2023, revealing that his condition had “progressed” into frontotemporal dementia (known as FTD).

“Since we announced Bruce’s diagnosis of aphasia in 2022, Bruce’s condition has progressed and we now have a more specific diagnosis: frontotemporal dementia… FTD is a cruel disease that many of us have never heard of and can strike anyone,” the statement from Bruce’s wife Emma Heming Willis, ex-wife Demi Moore and daughters Rumer, Scout, Tallulah, Mabel, and Evelyn read.

“For people under 60, FTD is the most common form of dementia, and because getting the diagnosis can take years, FTD is likely much more prevalent than we know.

“Today there are no treatments for the disease, a reality that we hope 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,” it continued.

“Bruce always believed in using his voice in the world to help others, and to raise awareness about important issues both publicly and privately. 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.”

Bruce with his wife Emma, daughter Rumer, daughter Tallulah, ex-wife Demi Moore and daughter Scout.

Since this statement was released, Bruce’s family have regularly updated the public on his condition but they’ve also advocated for others impacted by FTD.

In January 2024, Demi – who was married to Bruce from 1987 to 2000 and shares daughters Rumer, Scout and Tallulah with him – appeared on Good Morning America and offered advice to families of dementia patients.

“What I’ll share is what I say to my children, which [is] it’s important to just meet them where they’re at and not hold on to what isn’t, but what is.”

In November 2023, during an appearance on The Drew Barrymore Show, Bruce’s daughter Tallulah said when asked how her dad was doing, “He is the same, which, I think, in this regard I’ve learned is the best thing you can ask for. I see love when I’m with him, and it’s my dad and he loves me.”

She continued to say, “It’s really important for us to spread awareness about FTD because there’s not enough information out there.

Emma is now Bruce’s caregiver or as she calls it “carepartner.”

“The bigger version of what I’m trying to do [is] if we can take something that we’re struggling with as a family, and individually, and help other people to turn it around, to make something beautiful about it, that’s really special for us.”

Bruce’s wife, Emma has constantly spoken up for caregivers of dementia patients over the last year, as she herself is now Bruce’s primary caregiver.

“Dementia is hard. It’s hard on the person diagnosed. It’s also hard on the family… When they say this is a family disease, it really is,” Emma said in September 2023 while on the US Today show.

She then added that she prefers to refer to herself as a “carepartner” rather than a ‘caregiver’ or ‘caretaker’.

“He [Bruce] is my partner, so I’m his carepartner.”

You can read all of the advocacy Emma has done for caregivers here and learn more about FTD below.

What are the first signs of frontotemporal dementia?

The symptoms of frontotemporal dementia or FTD vary from person to person but these are the common ones, that usually start gradually and then progress steadily:

  • Personality and behavioural changes
  • Impaired judgement
  • Less frequent speech
  • Inability to understand or use language
  • Apathy and/or a lack of empathy
  • Decreased self awareness
  • Emotional withdrawal from others
  • Loss of motivation and energy
  • Frequent mood changes
  • Increasing dependence
  • Trouble planning and/or organising

Some patients also experience physical symptoms too, like tremors, muscle spasms or weakness, rigidity, poor coordination and/or balance, or difficulty swallowing.

Bruce, Emma and their daughters Mabel and Evelyn.

What is the life expectancy of someone with frontotemporal dementia?

The life expectancy of an FTD patient is, on average, 7 to 13 years after the start of symptoms. Currently, no treatments are available to cure or slow the progression of FTD.

What is the difference between aphasia and dementia?

Aphasia affects a person’s ability to communicate; patients tend to have difficulty reading, writing, speaking and understanding the words of others.

Dementia is a much broader condition and can affect patients’ memory, personality and behaviour. Frontotemporal dementia affects those things as well as language skills.

What is the difference between Alzheimer’s and frontotemporal dementia?

Alzheimer’s is the most commonly diagnosed form of dementia in older adults. It usually begins with memory loss, while FTD is typically a behaviour or language disorder.

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