Bruce Willis’ wife has hit back at criticism after she moved the star into a home where he can receive ‘around the clock care’.
Two years ago, the family of the Die Hard actor announced that he had been diagnosed with frontotemporal dementia (FTD), which came a year after his retirement from Hollywood.
Last week, Bruce’s wife Emma, 47, gave an emotional sit-down interview with Diane Sawyer, in which she spoke about the difficulties of the 70-year-old’s diagnosis and the tough decision she’s had to make about his care.
After critics accused her of neglecting her husband by sending him to a care home instead of continuing to serve as his primary caretaker, Emma took to Instagram.
She posted a video discussing the intricacies of her decision, captioning the post: ‘Too often, caregivers are judged quickly and unfairly by those who haven’t lived this journey or stood on the front lines of it.
‘Sharing openly may invite opinions, but more importantly, it creates connection and validation for those actually navigating the realities of caregiving every day.
‘That’s who I share for and so I can build a deeper connection with a community that understands this journey 💙’
She also said in the video that those who criticise often ‘don’t have the experience to back it up.’
She continued: ‘The truth is, the opinions are so loud and they’re so noisy, but if they don’t have any experience of this, they don’t get a say.’
In her interview with Diane Sawyer, Emma said of her decision to move Bruce into a home: ‘I knew first and foremost, Bruce would want that for our daughters, you know, he wouldn’t want them to be in a home that was more tailored to their needs, not his needs.’
Noise causes agitation for people with FTD, and Emma had to ‘isolate’ the family and stop having guests over before moving Bruce to a home where he could receive around the clock care.
‘It’s one of the hardest decisions I’ve ever had to make. Bruce is in really great health overall, you know. It’s just his brain that is failing him,’ she said.
‘The language is going, and, you know, we’ve learned to adapt. And we have a way of communicating with him, which is just a different, a different way.’
Emma went on to explain that she now spends breakfast and dinner with him every day and that he receives regular visits from their daughters and his friends and other family members.
When asked how Bruce reacted to the news that he would be moving out of his family home and into a care facility, she shared: ‘I don’t think he ever connected the dots.’
Reflecting on the early signs of the condition, Emma said she noticed significant personality changes in her husband – who went from being ‘very talkative and engaged to a little more quiet’.
He then became ‘indifferent’ and ‘pulled away’ from his wife, with Emma adding that he felt ‘cold’ and not his usual ‘warm and affectionate’ self.
‘To go the complete opposite of that was alarming and scary. I didn’t understand what was happening, and I thought just, like, “How can I remain in a marriage that doesn’t feel like what we had?”.’
Making the decision to then tell their young daughters – Mabel, 13, and Evelyn, 11 – what was happening, Emma said she had ‘always been very open with them’, adding that sharing the diagnosis allowed them to ‘understand truly what’s happening’.
What is frontotemportal dementia?
Frontotemporal dementia, aka FTD, is a less common form of dementia usually diagnosed in people aged 45-65, whereas dementia mostly affects people over 65.
The degenerative disease primarily affects communication and behaviour, as opposed to memory, like other types of dementia.
According to the NHS, signs of frontotemporal dementia can include:
- Personality and behaviour changes – acting inappropriately or impulsively, appearing selfish or unsympathetic, neglecting personal hygiene, overeating, or loss of motivation
- language problems – speaking slowly, struggling to make the right sounds when saying a word, getting words in the wrong order, or using words incorrectly
- problems with mental abilities – getting distracted easily, struggling with planning and organisation
- memory problems – these only tend to occur later on, unlike more common forms of dementia, such as Alzheimer’s disease
There may also be physical problems, such as slow or stiff movements, loss of bladder or bowel control (usually not until later on), muscle weakness or difficulty swallowing.
Read everything we know about Bruce Willis’ frontotemporal dementia diagnosis.
‘It is a house that is filled with love, and warmth, and care, and laughter. And it’s been beautiful to see that, to see how many of Bruce’s friends continue to show up for him, and they bring in life, and fun,’ she said.
After finally receiving the diagnosis, Emma was told there was ‘no hope’ for the Moonrise Kingdom actor and no cure, which left her ‘panicked and free-falling’.
Since then, his loved ones – including ex-wife Demi Moore and their three daughters Rumer, Scout, and Tallulah – have shared updates on his condition, whilst also advocating for more awareness of the neurodegenerative condition.
Before his retirement in 2022, the legendary action hero’s childhood stutter had reappeared, with the actor also ‘missing lines and cues’ when work on set.
Despite the diagnosis, Emma believes her husband does still recognise her as he ‘lights up’ when he sees her and his loved ones.
‘He’s holding our hands. We’re kissing him. We’re hugging him. He is reciprocating. You know, he is into it,’ she said.
‘And so that’s all I need, you know?. I don’t need him to know that I am his wife, and we were married on this day, and this is what it — I don’t need any of that. I just wanna feel that I have a connection with him. And I do.’
Holding back tears when detailing how ‘quickly those moments appear and go’, Emma added that despite the challenges, she is ‘grateful that my husband is still very much here’.
Emma has also written a book about her experience with caregiving – the Unexpected Journey: Finding Strength, Hope and Yourself on the Caregiving Path is set to be released on September 9.
‘Born from grief, shaped by love, and guided by purpose, this is the book I needed back when Bruce was first diagnosed and I was frozen with fear and uncertainty,’ she said when announcing the upcoming release.
‘This is the book I trust will help the next caregiver. It is filled with support, insight, and the hope needed to navigate this journey.’
A version of this article was first published on August 29, 2025.
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