Bruce Willis’s wife has revealed the “alarming” and “scary” changes she noticed before he was diagnosed with a little-known form of dementia, and given an update on how the actor is doing now.

Emma Heming Willis, who married the Die Hard and Sixth Sense star on a beach in 2009, spoke to journalist Diane Sawyer for a special on the American TV network ABC titled Emma and Bruce Willis: The Unexpected Journey.

It is timed to coincide with the upcoming release of Heming Willis’s book The Unexpected Journey, which she says was “born from grief, shaped by love” and written with the aim of offering insight and support for other caregivers.

In a preview clip for the special, which is streaming on Disney+ and Hulu from August 27, Sawyer describes Willis, now aged 70, as “America’s favourite action hero” and the kid from New Jersey who built a towering career and starred in more than 70 movies.

She recalls interviewing him many times for Good Morning America, and says how, following his divorce from fellow film star Demi Moore, he asked if the journalist might set him up with someone.

“And then he found her – his quiet dream girl who shared his working-class values,” Sawyer says of Heming Willis.

Willis, who has three children with Moore, expanded his family with two more daughters to model Emma. They marked their 17th wedding anniversary in January, when Heming Willis penned a tribute on Instagram speaking of her unconditional love but admitting that such occasions cause “a heaviness in my heart”.

She tells Sawyer she first started to notice “subtle symptoms” that suggested something was wrong when the usually buoyant husband and father become subdued.

“For someone who was very talkative and very engaged, he was just a little more quiet,” Heming Willis says. “And when the family would get together he would kind of just melt a little bit.”

She says the actor seemed to be losing words, and a childhood stutter reappeared.

“He felt a little removed, very cold, not like Bruce, who was very warm and affectionate. To going the complete opposite of that was alarming and scary.”

 

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Willis was initially diagnosed with aphasia in 2022, and retired from acting. A year later, his family released a statement saying his condition has progressed and they had a more specific diagnosis of frontotemporal dementia (FTD).

Dementia Australia describes FTD as a brain condition causing progressive damage to either or both the frontal or temporal lobes of the brain, noting that it typically affects people aged between 45 and 65 and there is no cure.

A neurologist and FTD expert, Dr Bruce Miller, says on The Unexpected Journey that it is “the unknown disease” which is often misdiagnosed as things such as bipolar disorder or depression.

At the time of Willis’s diagnosis, his family said they hoped future media attention could shine a light on FTD, which needed “far more awareness and research”.

Heming Willis tells Sawyer she previously knew nothing about frontotemporal dementia.

“I was so panicked and I just remember hearing it and not hearing anything else. It was like I was freefalling.”

In the time since, his family – including ex-wife Moore – have regularly shared updates and tributes, with daughter Rumer Willis saying how much she loved watching him interact with his little granddaughter.

Today, Heming Willis says her husband is still mobile and “in good health, overall”, but adds: “It’s just his brain that is failing … the language is going.”

Becoming visibly emotional, she says the family has adapted and created a different way to communicate.

“He has such a hardy laugh and sometimes you’ll see that twinkle in his eye or that smirk, and I’ll just get transported, and it’s just hard because as quickly as those moments appear, then it goes.”