Bruce Willis’ condition: What to know about frontotemporal dementia and aphasia

Hollywood star Bruce Willis can now barely speak or walk due to a rare brain disease. Here’s what you need to know.

Hollywood icon Bruce Willis’ battle with frontotemporal dementia (FTD) and aphasia has reportedly progressed to the point where he can barely speak, read, or walk.

In April, his family shared an update confirming that while the disease remains degenerative, his condition is considered stable. They continue to rally around him, offering steadfast support through what they’ve described as a “difficult chapter.”

While there’s been no official confirmation of further decline beyond previous reports, Willis’ loved ones have remained open with fans, regularly sharing updates and expressing gratitude for the global outpouring of support.

Most recently, his wife Emma Heming shared a glimpse into family life on Instagram, posting photos of a weekend trip to the Getty Museum in Los Angeles with their daughters, Mabel Ray, 13, and Evelyn Penn, 11.

As the beloved Die Hard star continues to live with frontotemporal dementia, here’s what you need to know about the condition, how it differs from other forms of dementia, and what it means for those living with it.

Bruce Willis celebrating thanksgiving with his daughters Scout and Tallulah. Pic Instagram.

WHAT HAPPENED TO BRUCE WILLIS?

In April 2022, his family announced that he was diagnosed with aphasia, and the next year, they shared his updated diagnosis of frontotemporal dementia (FTD).

FTD, an umbrella term for a group of other rare dementias, are also more likely to occur in both women and men aged between 45 and 64. These kinds of dementia develop in the front and sides of the brain, and can present themselves when a sufferer is in their 40s.

ARE BRUCE’S DAUGHTERS AWARE OF HIS CONDITION?

Emma has previously opened up about how she has approached discussing her husband’s condition with their daughters.

Speaking with Town & Country about how she has been coping the last couple of years, and how she spoken to Mabel and Evelyn about Bruce’s health, Emma said: “I’m trying to find that balance between the grief and the sadness that I feel, which can just crack open at any given moment, and finding joy,” and though it was a heartbreaking diagnosis to receive, she noted: “This disease is misdiagnosed, it’s missed, it’s misunderstood, so finally getting to a diagnosis was key so that I could learn what fronto­temporal dementia is and I could educate our children.”

“They’ve grown up with Bruce declining over the years. I’m not trying to shield them from it,” she said.

“What I learned from our therapist was that if children ask questions, they’re ready to know the answer. If we could see that Bruce was struggling, I would address it with the kids so they could understand.”

WHAT ARE THE SYMPTOMS?

The initial symptoms of FTD depend on which part of the brain is first affected.

The frontal lobes are involved in planning, attention, decision-making, mood and empathy. Damage to this region results in changes to personality and behaviour. This is known as behavioural-variant FTD (bvFTD).

The temporal lobes are involved in understanding and expressing language. Damage to this region causes the decline of language skills. This is known as primary progressive aphasia (PPA), of which there are three variants: semantic dementia, progressive nonfluent aphasia, and logopenic aphasia.

HOW MANY AUSSIES ARE AFFECTED?

While around 433,000 people are living with dementia in Australia, the number affected by FTD is harder to pinpoint, according to researcher and Professor of Clinical Neuropsychology Olivier Piguet.

Prof Piguet is the director of FRONTIER, the largest specialist FTD clinic in Australia, based at the University of Sydney’s Brain and Mind Centre.

“FTD is what is considered a younger onset dementia (i.e. with a disease onset before the age of 65 years). There is no Australian-wide prevalence data on FTD,” he said.

“What we know is that it is estimated that there are approximately 28,000 Australians living with younger-onset dementia (all diagnoses).

“Based on international studies, we would estimate that a third to half of these people would have FTD.

“Another difficulty is that clinical presentations are variable: some will show behaviour changes whereas others will start having difficulty with language (understanding, expression) or a mix of both. As such, misdiagnosis is frequent.

In 2025 there are an estimated 29,000 people living with younger onset dementia, which is expected to increase to an estimated 41,000 people by 2054. This can include people in their 30s, 40s and 50s.

(L-R) Rumer Willis, Demi Moore, Bruce Willis, Scout Willis, Emma Heming Willis and Tallulah Willis. Picture: Getty Images

WHAT IS THE DIFFERENCE BETWEEN ALZHEIMER'S AND FTD?

While the terms “Alzheimer’s disease” and “dementia” are often used interchangeably, it’s important to know the difference between the two.

Dementia is not one specific disease. Rather, it’s an umbrella term for a set of symptoms caused by physical disorders affecting the brain.

Alzheimer’s disease is the most common cause for dementia, accounting for 60-80 per cent of all diagnoses.

Overall, know that Alzheimer’s disease is a specific disease, while dementia is a general term for a group of similar diseases, of which Alzheimer’s is one.

Associate Professor Steve Macfarlane, Dementia Support Australia’s Head of Clinical Services, said FTD, is often misdiagnosed as GPs are more familiar with Alzheimer’s dementia. Unlike Alzheimer’s, memory loss is not a major early symptom.

He said there were three broad subtypes of FTD in its initial stages – the most common involving personality and behavioural changes including loss of empathy. Impulsive behaviour including aggression and disinhibition, and sometimes apathy.

“All these changes can be especially distressing for those who care for them,” he said.

IS DEMENTIA HEREDITARY?

Family history is not necessary for an individual to develop Alzheimer’s.

However, research shows that those who have a parent or sibling living with Alzheimer’s are more likely to develop the disease than those who do not have a first-degree relative with Alzheimer’s.

Bruce Willis with his granddaughter. Picture: Instagram

IS THERE A WAY TO PREVENT DEMENTIA?

Associate Professor Michael Woodward, the Dementia Australia Honorary Medical Adviser, said there four big risk factors for cognitive decline are diet, exercise, mental activity and social engagement.

He said Australians should concentrate on getting those right by following a Mediterranean diet, exercising 200 minutes a week, working their brain for 30 minutes a day and fostering an active social network.

Prof Woodward said evidence shows that those who have been diagnosed with mild cognitive impairment can stave off its progression or Alzheimer’s by changing their lifestyle, because it is never too late.

He also said signs that there is a problem brewing include constantly misplacing objects, forgetting what happened yesterday, or even 15 minutes ago, repeating yourself and having trouble navigating when driving.

IS THERE ANY TREATMENT?

Prof Piguet said there is no cure or disease modifying treatments for FTD. However, there are a number of clinical trials currently underway to test novel drugs.

“The challenge with FTD is that it involves multiple brain pathologies, unlike Alzheimer’s disease,” he said.

“Three broad families of pathology have been identified in FTD. The additional challenge is that there is no or little relationship between the symptoms and the underlying pathology. In other words, it is still difficult to predict in life the type of pathology that a patient would have.

As such, the pharma companies are focusing on the genetic or familial forms of FTD, that is FTD that is caused by a mutation on a specific gene and where there is transmission across generations

“In these families, the pathology is known, ensuring proper examination of the effect of the drug on this brain pathology.

“As with all dementias, pathological changes in the brain will have started 10-15 years before the symptoms become apparent. In other words, by the time the patient, or their partner, realise that something is not right, there are already marked changes in the brain (loss of nerve cells, brain atrophy, disturbance in neurotransmitters, etc.)

WHAT ARE THE WAYS TO MANAGE FTD?

Prof Piguet said most of the interventions are focusing on managing symptoms.

“The first avenue is non-pharmaceutical and trying to manage some of the symptoms. For things such as aggression, apathy, or disinhibition, it means trying to understand how/when these behaviours occur and why and then remove these triggers,” he said.

“We often work with family members to identify these triggers and provide them with strategies to avoid them, or how to respond to the behaviours of concern so that they are less frequent or less severe.

“Sometimes it is a simple as for family members/carers to realise that these behaviours are caused by the disease, and that the patient is not doing it on purpose.”

Prof Piguet said for the patients with primary language disturbances, speech and language retraining strategies have been very successful, whereby patients can improve their conversational skills with targeted retraining.

“As part of FRONTIER, We have a clinic focusing on these language symptoms and working with patients to help them re-learn some of these skills,” he said.

“Overall, our studies and that of other research groups have shown that management of these symptoms and carer education, will improve the quality of life for both patients and carers, resulting in reduced carer burden and burnout.

“There is also evidence that shows that carer burden is one of the main drivers for nursing home placement. In other words, if we can minimise carer stress and burden, this will result in better quality of life, and independence in daily activities for longer, therefore delaying nursing home placement.

WHAT IS THE LIFE EXPECTANCY OF BRUCE WILLIS’ CONDITION?

Emma has previously shared that the disease is “chronic, progressive, and terminal.”

“There is no cure. Obviously, I don’t like to speak about the terminal side of this with them (their daughters), nor have they asked,” she said.

“(However) they know that Daddy’s not going to get better.”

According to FRONTIER Research Group at the University of Sydney, the rate of decline varies, and can range from 2 to 20 years.

As the disease progresses, more symptoms in behaviour, language or movement may appear as more regions of the brain are affected. Unfortunately, there is currently no cure for FTD, nor treatments to slow or stop disease progression.

However, there are strategies to manage FTD symptoms that can help to maintain and improve quality of life for the person affected and their loved ones.

Tallulah Willis shared new photos with her father last month, just days after her sister Rumer shared a devastating health update.

WHAT IS HIS CONDITION NOW?

Tallulah Willis shared new photos with her father last month, just days after her sister Rumer shared a devastating health update.

“Sunday funday at Grams! Grateful,” Tallulah, 31, wrote on Instagram.

In the photos, Tallulah is seen with Bruce and family members relaxing at home.

The first photo shows Tallulah seated on the floor, the pair are smiling at each other with Tallulah holding Bruce’s hand.

The second photo shows Tallulah resting her face on Bruce’s chest with her eyes closed, while Bruce smiles with his arms around his daughter.

Rumer, 36, had previously shared a sad health update about her dad on Father’s Day in the US on June 15.

“Today is hard, I feel a deep ache in my chest to talk to you and tell you everything I’m doing and what’s going on in my life,” she wrote on Instagram.

“To hug you and ask you about life and your stories and struggles and successes. I wish I asked you more questions while you could still tell me about it all,” she continued.

“But I know you wouldn’t want me to be sad today so I’ll try to just be grateful reminding myself how lucky I am that you’re my dad and that you’re still with me.

“I can still hold you and hug you and kiss your cheek and rub your head I can tell you stories.

National Dementia Helpline 1800 100 500

Originally published as Bruce Willis’ condition: What to know about frontotemporal dementia and aphasia