Willis may not be aware of dementia, wife reveals

Emma Heming Willis has described his diagnosis with frontotemporal dementia as ‘a blessing and a curse’

Bruce Willis with his wife, Emma Heming Willis. Picture: Dia Dipasupil/WireImage

The wife of Bruce Willis has said it was hard to know if the Hollywood actor was aware of his dementia diagnosis.

Willis, 68, announced his retirement from acting last year after revealing that doctors had diagnosed aphasia, a condition that makes it difficult to understand or express speech.

In February the family said that his condition had progressed and doctors told him that he suffered from frontotemporal dementia, a rare form of the disease that causes serious cognitive difficulties.

Emma Heming Willis, 45, who has two daughters with Willis, has spoken about the toll the diagnosis has taken on the family. “What I’m learning is that dementia is hard,” she told the Today program on NBC. “It’s hard on the person diagnosed. It’s also hard on the family. And that is no different for Bruce or myself or our girls. And when they say that this is a family disease, it really is.”

The family said that Willis’ condition had progressed and doctors told him that he suffered from frontotemporal dementia. Picture: Tolga Akmen / AFP

Heming Willis, a model who has a British father and was born in Malta, fought back tears while calling the diagnosis “the blessing and the curse”. Asked if he was aware of his condition, she said: “It’s hard to know … It doesn’t make it any less painful, but … just being in the know of what is happening to Bruce makes it a little bit easier.

Willis, a Hollywood action film actor known for the Die Hard franchise as well as films including The Fifth Element, Armageddon and The Sixth Sense, had three daughters with his first wife, the actor Demi Moore. They divorced in 2000 and he married Heming Willis in the Turks and Caicos Islands in 2009. They have two daughters, Mabel, eleven, and Evelyn, nine.

Asked how she explained Willis’s illness to their daughters, Heming Willis, who describes herself as a “care partner” to her husband, said: “We’re a very honest and open household.

“The most important thing was to be able for us to say what the disease was, explain what it is, because when you know what the disease is from a medical standpoint it sort of all makes sense. So it was important that we let [our daughters] know what it is because I don’t want there to be any stigma or shame attached to their dad’s diagnosis, or for any form of dementia.”

Bruce Willis celebrated his 68th birthday in March surrounded by family, including Emma Heming Willis, left, and his first wife, Demi Moore, second from right

She said she wanted to remain positive despite the diagnosis. “Bruce would really want us to be in the joy of what is; he would really want that for me and our family,” she said. Asked what he had taught their daughters, she said: “He is the gift that keeps on giving. Love, patience, resilience. So much.”

Frontotemporal dementia affects both sides of the brain and causes problems with behaviour and language, according to the NHS. Although dementia is usually diagnosed in people over 65, frontotemporal dementia tends to start at an earlier age and most cases are diagnosed in people aged between 45 and 65 years of age.

The disease tends to develop slowly but gets gradually worse over several years. Symptoms include changes in personality and behaviour, such as acting impulsively or neglecting personal hygiene. Memory problems can develop later. Language is also affected and sufferers can struggle to speak.

Once symptoms of the disease begin, the average survival time is eight to ten years, according to the NHS, although some people can live for much longer. Between 10 and 30 per cent of frontotemporal dementia cases are inherited, according to the US National Institute on Ageing.

Willis had once been one of Hollywood’s biggest draws – his films have grossed more than dollars 5 billion at the global box office – but he spent the later part of his career starring in direct-to-video action movies that were not always critically acclaimed. It later emerged that those working on the films with Willis had for years suspected that he was in declining health.

The Los Angeles Times reported in 2022 that it often appeared as though Willis was not fully aware of his surroundings and struggled to remember his lines. Although the work was lucrative – sometimes he could be paid dollars 2 million for two days’ work – he is said to have had to have his dialogue fed through an earpiece. He was said to have been unable to perform most action scenes and had instead to rely on a body double.

He remains close to Moore, 60. They have daughters Rumer Willis, 35, Scout Willis, 32, and Tallulah Willis, 29. Moore paid tribute to Willis while celebrating his birthday in March. She shared a video on Instagram showing the family singing happy birthday. “Happy birthday, BW! So glad we could celebrate you today,” Moore wrote. “Love you and love our family. Thank you to everyone for the love and warm wishes – we all feel them.”

Following Heming Willis’s appearance on the Today show, Scout praised her for spreading awareness of the disease afflicting their family. “Your courage is moving mountains,” she wrote. “You are such a champion for this cause and you inspire me every single day.”