Emma Heming Willis shared her experience of discovering her husband Bruce Willis's dementia during a recent event in Toronto. She recalled that the return of his childhood stutter was her first indication that something was amiss. "Never in my wildest dreams did I realize that was a symptom," she said.

Bruce Willis, 70, had previously overcome this speech impediment, which had earned him the nickname "Buck Buck" in his youth. However, the reemergence of the stutter, along with other communication issues in his late sixties, pointed to progressive aphasia, a condition that would later be diagnosed as a form of dementia. In 2022, Willis announced his retirement from acting after a celebrated career that included iconic roles in films like "Die Hard" and "Pulp Fiction." Shortly after, he was diagnosed with frontotemporal dementia, the most common type of early-onset dementia.

Heming Willis described the diagnosis as a life-altering moment for both of them. She referred to it as "our diagnosis," a term that encapsulates the overwhelming knowledge of the cognitive decline affecting her husband. "I left with a diagnosis I didn’t understand. I couldn’t pronounce it," she said. She felt isolated and burdened by grief, stating, "Early on it was very lonely. I carried a lot of grief. I continue to."

In the years since, Heming Willis, 47, has taken on a public advocacy role, supporting others who care for loved ones with dementia and similar conditions. She has faced challenges, including criticism regarding the decision to move Willis to a second family home in Los Angeles, where he receives full-time care. Heming Willis and Bruce have two daughters, Mabel, 13, and Evelyn, 11, who visit their father regularly. This arrangement allows the children to maintain a sense of normalcy in their lives.

Heming Willis grew up in California and began her modeling career in England before returning to New York. She married Bruce Willis in 2009 and recently published a memoir titled "The Unexpected Journey," which focuses on her role as a caregiver. During her talk at the Women’s Brain Health Summit, she shared insights from a neurologist who warned her that caregivers often neglect their own health. "It was such a wake-up call for me. I did not realize that caregiving could be so harmful to your health," she said.

She emphasized the importance of seeking help, noting that it should not be seen as a failure but rather as a sign of strength. Heming Willis also referenced the book "Floating In The Deep End: How Caregivers Can See Beyond Alzheimer’s" by Patti Davis, which encourages caregivers to prioritize their own well-being. One strategy she employs is allowing herself thirty minutes to express her emotions before moving forward. "And then I move on," she said.

Heming Willis highlighted the often-overlooked struggles of caregivers, who may feel "unseen, unsupported" as they prioritize the needs of their loved ones. She advised caregivers to keep informational materials handy to help explain their situation to others, especially children, who may have evolving questions as they grow.

She expressed a desire for open discussions about dementia in her home, stating, "I wanted to talk about his disease," and aimed to prevent her children’s lives from being overshadowed by fear and silence. Today, she noted that Willis is "surrounded by love and support," and she feels grateful for the journey they are navigating together as a family, which includes Bruce's three adult daughters from his previous marriage to actress Demi Moore. At the summit, she concluded, "We are all pulling through as a family," and she feels "blessed" to be on this journey with him.