Emma Heming Willis has taken on the role of caregiver for her husband, Bruce Willis, as he faces frontotemporal dementia (FTD). This has led to changes in how they communicate with each other.
In an interview with The Sunday Times, Emma shared that she and Bruce have developed their own unique way of connecting. She explained it’s about spending time together, walking alongside him, and listening as he expresses himself in his own way offering understanding and validation throughout.
Heming Willis, 47, stopped there, crying gently, according to the outlet. “I’m sorry,” she added, before going on to call FTD “an unkind disease.”
She continued, “It constantly takes. Even when you think it can’t take any more, it takes a little more.”
Frontotemporal dementia (FTD) is a brain disorder that affects the frontal and temporal lobes, leading to difficulties with speech, emotional challenges, and changes in personality. Emma Heming Willis reflected that Bruce’s condition has, in a way, spared him from fully understanding the disease.
Emma is sharing her experience with her husband’s health journey and how their family is adjusting in her new book, The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path, which was released on September 9.
She told The Times that Bruce’s diagnosis wasn’t marked by a single event but by a gradual shift in his behavior. “It just wasn’t Bruce,” she said, describing the months before the diagnosis. “It wasn’t the man I married. It felt like waking up next to someone else.”
Willis, 70, now lives in a separate residence near the home he shared with his wife and their daughters, Mabel, 13, and Evelyn, 11. Heming Willis called the move “one of the hardest decisions I ever had to make,” but insisted to The Times that it was the right decision for Willis and their girls allowing them to be children and giving her the chance to “get back to being his wife. And that’s such a gift.”
She added of his residence: “It’s made such a difference for more friends and family to have their own experience with him without it being my home, without me hovering, or my anxiety of how to manage the guest and their expectations, and then have to see their reactions their sadness at what is.”
Bruce Willis has three daughters Rumer, 37, Scout, 34, and Tallulah, 31 with his ex-wife, Demi Moore.
Moore, 62, and the daughters have been very supportive of Emma Heming Willis’s efforts to raise awareness for FTD research and her commitment as Bruce’s caregiver.
Emma told The Times, “I really turn to my stepdaughters and Demi they’re helping me navigate this.” She also praised the family dynamic, saying, “Demi and Bruce set it up for us to be able to thrive in this way, to support each other.”
Heming Willis said she still shares “moments of connection” with Willis, but that she still “can’t believe Bruce has this disease.”
She concluded, “Do I think he knows, ‘Oh, this is Emma, and we’ve been married for this many years’? I don’t know what that process is for him. And when he puts his arms around me, it just feels like Bruce. It’s not different in that way. And that’s really, really beautiful and really, really heartbreaking. It’s such a loss.”