Bruce Willis' wife reveals heartbreaking reaction to his dementia diagnosis. All about FTD, causes and symptoms

Bruce Willis' wife Emma Heming Willis has opened up for the first time about the actor’s dementia diagnosis. The actor's brain is "failing him," and his ability to communicate is fading, his wife said amid Bruce Willis three-year battle with dementia. The diagnosis forced Willis to retire from acting in 2023.

“I was so panicked, and I just remember hearing it and just not hearing anything else,” Heming Willis told Diane Sawyer about the “Die Hard” actor developing frontotemporal dementia.

Bruce Willis dementia diagnosis

Bruce Willis' wife Emma Heming Willis has revealed how she felt when her husband was diagnosed with dementia. The 70-year-old actor had to take a step back from his acting career due to ongoing health issues. He and his family later announced that he had been diagnosed with the language impairment disorder aphasia. The following year, Willis' family stated he had been diagnosed with a form of dementia called frontotemporal degeneration (FTD).

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"Bruce is still very mobile. Bruce is in really great health overall, you know," Heming Willis told ABC News' Diane Sawyer in the ABC special "Emma & Bruce Willis: The Unexpected Journey," a preview of which aired Tuesday on "Good Morning America." "It's just his brain that is failing him."

The actor, known for delivering one-liners in the movie, is struggling with the loss of language, according to Heming Willis, who has written a new book about her family's experience, "The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path."

"The language is going, and, you know, we've learned to adapt," she said. "And we have a way of communicating with him, which is just a ... different way."

The book is described as “for anyone caregiving for a loved one with any form of dementia, and even for those caregiving for other conditions. … ‘The Unexpected Journey’ shows that you are not alone.”

Speaking of transitioning into Willis' carer, she said: "Those early stages were deeply isolating. I struggled with a sense of powerlessness, feeling as if I had no control over what was happening to my family.

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"At the same time, I was grappling with grief, the loss of the life I had known, all while raising our two young daughters." She added: "I came to realize that this new reality could easily consume me if I let it. That’s when I reached out for a lifeline."

The family went public with Willis' diagnosis and Emma says 'we were met with an outpouring of kindness and global support'. She continued: "Going public was the right decision for our family for many reasons: to reduce stigma, raise awareness, and, for me, to connect with a wider community."

Emma wishes she had 'taken the leap of faith and asked for help sooner,' explaining: "Everything changed when I found the right information, resources, and community to lean on. I began to realize that, even in my new role as a care partner, I still had agency. And with that, I started to find joy, see beauty, and choose hope."

What is frontotemporal dementia?

According to the Centers for Disease Control and Prevention, frontotemporal dementia is a type of dementia that impacts one's personality and may cause behavioral changes. According to Mayo Clinic, frontotemporal dementia is an “umbrella term” for brain diseases that impact the frontal and temporal lobes, which can shrink.

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People who develop FTD can experience changes in their personality and develop an inability to speak. There is currently no cure or treatment for FTD, but medications can be effective in mitigating behavioral issues associated with symptoms.

Your risk of getting frontotemporal dementia is higher if you have a family history of dementia. There are no other known risk factors.

Symptoms

Symptoms of frontotemporal dementia differ from one person to the next. Symptoms get worse over time, usually over years, according to Mayo Clinic.

People with frontotemporal dementia tend to have clusters of symptom types that occur together. They also may have more than one cluster of symptom types.

The most common signs of frontotemporal dementia (FTD) are marked by drastic changes in behavior and personality. These may include:

Increasingly inappropriate or socially unacceptable behavior

Loss of empathy and difficulty connecting with others’ emotions

Poor judgment and decision-making

Reduced self-control or impulsive actions

Lack of motivation or interest (apathy), which is often mistaken for depression

Repetitive or compulsive behaviors, such as tapping, clapping, or lip-smacking

Decline in personal hygiene and self-care

Shifts in eating habits, such as overeating or craving sweets and carbohydrates

Eating inedible objects

A strong urge to put non-food items in the mouth

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Speech and language symptoms

Some subtypes of frontotemporal dementia lead to changes in language ability or loss of speech. Subtypes include primary progressive aphasia, semantic dementia and progressive agrammatic aphasia, also known as progressive nonfluent aphasia.

These conditions can cause:

Increasing trouble using and understanding written and spoken language

People with FTD may not be able to find the right word to use in speech.

Trouble naming things. People with FTD may replace a specific word with a more general word, such as using "it" for pen.

No longer knowing word meanings.

Having hesitant speech that may sound telegraphic by using simple, two-word sentences.

Making mistakes in sentence building.

Movement conditions

Rare subtypes of frontotemporal dementia cause movements similar to those seen in Parkinson's disease or amyotrophic lateral sclerosis (ALS).

Movement symptoms may include:

Tremor

Rigidity.

Muscle spasms or twitches.

Poor coordination.

Trouble swallowing.

Muscle weakness.

Inappropriate laughing or crying.

Falls or trouble walking.

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Causes

In frontotemporal dementia, the frontal and temporal lobes of the brain shrink and certain substances build up in the brain. What causes these changes is usually not known.

Some genetic changes have been linked to frontotemporal dementia. But more than half of the people with FTD have no family history of dementia.

Researchers have confirmed that some frontotemporal dementia gene changes also are seen in amyotrophic lateral sclerosis (ALS). More research is being done to understand the connection between the conditions.