Emma Hemming Willis says she and Bruce Willis have developed a 'new language' as his frontotemporal dementia progresses

Emma Hemming Willis said she and her husband, actor Bruce Willis, have developed a "new language" to communicate as he lives with frontotemporal dementia (FTD), describing how she now relies on body language, eye contact and validation to remain connected.

Hemming Willis, 47, told The Times that because Willis, 70, struggles to speak she and the Die Hard star have evolved ways to be with one another: "It's just about sitting with him, walking with him, listening to him as he tries to verbalise in his own language. Hearing him, validating him." She said she reads his body language and looks into his eyes to understand what he is experiencing and added, "We have these moments of connection all the time." The couple have been married 14 years and share two daughters.

Willis was first publicly diagnosed with aphasia in 2022, a disorder that impairs language comprehension and expression. In 2023 his family disclosed a subsequent diagnosis of frontotemporal dementia, a form of dementia associated with progressive loss of nerve cells in the brain's frontal and temporal lobes. As these regions shrink, experts say, patients can experience changes in personality, behavior and language skills, as well as judgment problems and motor symptoms.

Hemming Willis described the emotional and practical toll of the disease in her new book, The Unexpected Journey: Finding Strength, Hope and Yourself on the Caregiving Path. In an excerpt shared by US Weekly, she recounted the family's decision to move Willis out of the family home into separate living quarters with 24-hour care. She called the choice "painful" but said it was made to ensure his safety, overall well-being and the stability of their young children.

"Realising that there is no treatment, no cure. It was one of the most traumatic experiences, feeling completely alone," Hemming Willis wrote in the book excerpt. She characterized FTD as an "unkind disease" that "constantly takes," adding that seeing the husband she knew in new ways is both "really, really beautiful and really, really heartbreaking. It's such a loss." She said she does not always know whether Willis recognises her cognitively but that physical gestures, such as when he puts his arms around her, still "feel like Bruce."

FTD most often affects people between the ages of 45 and 65, though it can occur outside that range, and is less common than Alzheimer’s disease. Estimates from the Alzheimer's Association suggest that between 50,000 and 60,000 people in the United States have some form of FTD. There is currently no cure for FTD; management focuses on symptom relief and supportive care.

The Willis family has said that Bruce Willis is receiving round-the-clock care. Hemming Willis's account joins a growing body of public caregiving narratives in which spouses and family members describe adapting communication, routines and living arrangements as neurodegenerative diseases progress. Her book frames those changes through personal experience, documenting both daily caregiving decisions and the emotional consequences of long-term decline.

Hemming Willis's remarks and excerpts from her book provide a detailed personal perspective on how families confront progressive cognitive disorders, the practical steps they take to protect loved ones, and the ways relationships can be sustained even as abilities change. Medical specialists recommend that families working with dementia diagnoses seek multidisciplinary care, plan for safety and legal issues early, and access support services to help manage both patient needs and caregiver wellbeing.