Emma Hemming Willis says she developed a 'new language' to communicate with Bruce Willis

Emma Hemming Willis says she has developed a "new language" to communicate with her husband, actor Bruce Willis, as he lives with a rare form of dementia that has eroded his ability to speak.

The 47-year-old told The Times that because Willis, 70, struggles to verbalize, their interaction has shifted to gestures, body language and quiet presence. "Bruce and I now have our own language, our own way to be with each other," she said. "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."

Willis was first diagnosed with aphasia, a disorder that affects how the brain comprehends and forms language, in 2022. In 2023 the actor was diagnosed with frontotemporal dementia (FTD), a progressive condition caused by the loss of nerve cells in the brain's frontal and temporal lobes. The family has said he is under 24-hour care.

In an excerpt from her new book, The Unexpected Journey: Finding Strength, Hope and Yourself on the Caregiving Path, Hemming Willis wrote that the decision to move Willis out of the family home and into separate living quarters with around-the-clock care was "painful" but necessary for his safety and for the well-being of their young children. The excerpt was shared by US Weekly.

Hemming Willis described the emotional complexity of the caregiving role and the uncertainty about what memories or recognition remain. "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," she wrote. But she added that physical moments of connection — such as when he puts his arms around her — still feel like Bruce, bringing both comfort and grief.

Frontotemporal dementia most commonly affects people between about 45 and 65, though it can occur outside that range. As the disease progresses, reductions in the frontal and temporal lobes can lead to changes in personality, behavior and language abilities. Symptoms may also include loss of judgment, distractibility and motor problems such as muscle weakness and tremors. The Alzheimer's Association estimates that 50,000 to 60,000 people in the United States have some form of FTD.

Hemming Willis called the illness "unkind" and said it "constantly takes. Even when you think it can't take any more, it takes a little more." She wrote that learning there is no treatment or cure was among the most traumatic parts of the journey and described feeling alone in the early days after the diagnosis.

The couple, who married in 2009, have two daughters. Hemming Willis has described moving from partner to primary caregiver and recounted the continuing challenges of balancing Willis's care with family life. She said the move to a care facility, while painful, was made with his overall well-being and safety in mind.

Medical experts say caregiving for people with progressive dementias often requires adapting communication strategies, focusing on nonverbal cues and creating routines that prioritize safety and emotional connection. Hemming Willis's account highlights the personal and practical choices families face when a loved one receives a degenerative diagnosis and the ways some couples preserve connection even as the disease progresses.