Bruce Willis dementia diagnosis: Daughter Tallulah reveals ‘I knew something was wrong for a long time’
Bruce Willis’s daughter has revealed how he still recognises her and “lights up” when she enters the room, as loved ones come to terms with his dementia diagnosis.
Tallulah Willis laid bare the impact the Hollywood actor’s illness has had on her family in an essay for Vogue Magazine.
The 29-year-old said she knew “something was wrong for a long time” before the family announced the Die Hard star was suffering from aphasia – a condition affecting the brain which causes speech and language difficulties – leading to his retirement.
She later learned aphasia was a feature of frontotemporal dementia (FTD) – which “chips away at his cognition and behaviour day by day”.
The Pulp Fiction actor – who shares daughters Rumer, Tallulah and Scout with ex-wife Demi Moore – was diagnosed with the progressive neurological disorder in February this year.
Willis wrote the article days after the actor’s wife, model Emma Hemming-Willis, with whom he has two daughters, Mabel, 10, and Evelyn, eight, described the “toll” on her mental health and spoke poignantly about how their time together was precious.
“It started out with a kind of vague unresponsiveness, which the family chalked up to Hollywood hearing loss. ‘Speak up! Die Hard messed with Dad’s ears,'” Willis wrote.
Later, the unresponsiveness “broadened”, she added.
“He still knows who I am and lights up when I enter the room.
“He may always know who I am, give or take the occasional bad day. One difference between FTD and Alzeimer’s dementia is that, at least early in the disease, the former is characterized by language and motor deficits, while the latter features more memory loss.
“I keep flipping between the present and the past when I talk about Bruce: he is, he was, he is, he was. That’s because I have hopes for my father that I’m so reluctant to let go of.”
Bruce and Tallulah Willis pictured at the premiere of The Whole Ten Yards in 2004 Pic: Rex
‘My father’s condition hit me painfully’
Willis admitted she has met her father’s decline in recent years with a “share of avoidance and denial that I’m not proud of” – due to various health issues including anorexia nervosa, depression and being diagnosed with ADHD, which led to rapid weight loss and body dysmorphia.
During her own health battles, the actor was “quietly struggling”, she said.
Recalling a moment when her father’s condition “hit me painfully”, she wrote: “I was at a wedding in the summer of 2021 on Martha’s Vineyard, and the bride’s father made a moving speech.
Bruce Willis in 1999
“Suddenly I realized that I would never get that moment, my dad speaking about me in adulthood at my wedding. It was devastating. I left the dinner table, stepped outside, and wept in the bushes.”
Last spring, Willis saw her weight drop to about 84 pounds (38.1kg).
“The other night, I lay in bed thinking to myself, with an ache in my heart, what if my dad had been his full self and saw me at that size? What would he have done?
“I’d like to think that he wouldn’t have let it happen.
“Whereas my sisters and my mother have these extensive tool kits – lots of psycho-education and interpersonal skills, my dad has never been so interested in root causes, in close examination.
“Maybe he’s a stereotypical father of a certain generation in that way, a doer who, if he had understood, might have scooped me up and said, ‘This is ending now.’
“His style has always been to plug the leak even if he’s not sure why the leak is happening.
“Certainly there are benefits to examination, but there’s a beauty in his way, and I don’t think I noticed it until he was no longer capable of it.”
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Willis is now focused on recovery and her relationship with her father – whose mobility has not been affected by his condition.
“Every time I go to my dad’s house, I take tons of photos of whatever I see, the state of things. I’m like an archaeologist, searching for treasure in stuff that I never used to pay much attention to.
“I have every voicemail from him saved on a hard drive,” she said.
“I find that I’m trying to document, to build a record for the day when he isn’t there to remind me of him and of us.
“These days, my dad can be reliably found on the first floor of the house, somewhere in the big open plan of the kitchen-dining-living room, or in his office.
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“That office has always been a kind of window into what he’s most interested in at any given moment. Recently I found a scrap of paper there on which he had written, simply, ‘Michael Jordan’. I wish I knew what he was thinking. (In any case, I took it!)
“The room is filled with the nick-nacks he has collected: vintage toy cars, coins, rocks, objects made of brass. He likes things that feel heavy in the hand, that he can spin around in his fingers.”
Last month the actor and Moore became grandparents after Rumer announced the birth of her first child, Louetta Isley Thomas Willis.
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Joy star James Norton on the ‘postcode lottery’ of IVF – and playing the scientist who was part of creating the first ‘test-tube baby’
Actor James Norton, who stars in a new film telling the story of the world’s first “test-tube baby”, has criticised how “prohibitively expensive” IVF can be in the UK.
In Joy, the star portrays the real-life scientist Bob Edwards, who – along with obstetrician Patrick Steptoe and embryologist Jean Purdy – spent a decade tirelessly working on medical ways to help infertility.
The film charts the 10 years leading up to the birth of Louise Joy Brown, who was dubbed the world’s first test-tube baby, in 1978.
In the UK, statistics show the proportion of IVF cycles paid for by the NHS has dropped from 40% to 27% in the last decade
Norton, who is best known for playing Tommy Lee Royce in the BAFTA-winning series Happy Valley, told Sky News he has friends who were IVF babies and other friends who have had their own children thanks to the fertility treatment.
“But I didn’t know about these three scientists and their sacrifice, tenacity and skill,” he said. The star hopes the film will be “a catalyst for conversation” about the treatment and its availability.
“We know for a fact that Jean, Bob and Patrick would not have liked the fact that IVF is now so means based,” he said. “It’s prohibitively expensive for some… and there is a postcode lottery which means that some people are precluded from that opportunity.”
Bill Nighy, Thomasin McKenzie and James Norton star in Joy. All pics: Netflix/ Kerry Brown
Now, IVF is considered a wonder of modern medicine. More than 12 million people owe their existence today to the treatment Edwards, Steptoe and Purdy worked so hard to devise.
But Joy shows how public backlash in the years leading up to Louise’s birth saw the team vilified – accused of playing God and creating “Frankenstein babies”.
Bill Nighy and Thomasin McKenzie star alongside Norton, with the script written by acclaimed screenwriter Jack Thorne and his wife Rachel Mason.
The couple went through seven rounds of IVF themselves to conceive their son.
Norton portrays scientist Bob Edwards, while McKenzie plays embryologist Jean Purdy
While the film is set in the 1970s, the reality is that societal pressures haven’t changed all that much for many going through IVF today – with the costs now both emotional and financial.
“IVF is still seen as a luxury product, as something that some people get access to and others don’t,” said Thorne, speaking about their experiences in the UK.
“Louise was a working-class girl with working-class parents. Working class IVF babies are very, very rare now.”
In the run-up to the US election, Donald Trump saw IVF as a campaigning point – promising his government, or insurance companies, would pay for the treatment for all women should he be elected. He called himself the “father of IVF” at a campaign event – a remark described as “quite bizarre” by Kamala Harris.
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Bill Nighy ‘proud’ of new film on IVF breakthrough
“I don’t think Trump is a blueprint for this,” Norton said. “I don’t know how that fits alongside his questions around pro-choice.”
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In the UK, statistics from fertility regulator HEFA show the proportion of IVF cycles paid for by the NHS has dropped from 40% to 27% in the last decade.
“It’s so expensive,” Norton said. “Those who want a child should have that choice… and some people’s lack of access to this incredibly important science actually means that people don’t have the choice.”
Joy is in UK cinemas from 15 November, and on Netflix from 22 November
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