Along with Bruce Willis’ family members, wife Emma Heming Willis has taken to social media to advocate for care following her husband’s frontotemporal dementia diagnosis. Bruce Willis, celebrated actor and father of five daughters, just received this diagnosis in 2023. Frontotemporal dementia, a rare, progressive disease that dramatically affects personality, can cause dramatic changes in behavior.
When they first shared Bruce Willis’s diagnosis with the world earlier this year, the family opened up about how it has affected them emotionally. In recent months, actor Emma Heming Willis has assumed the role of full-time caregiver for her husband. She shared about the struggles that they’ve encountered since his diagnosis. She stressed the importance of helping families like hers, who when first diagnosed, are ill-equipped to deal with such a new reality.
Since then, Emma Heming Willis has been dedicated to making sure Bruce is getting the best possible care every day. She stated, “I have ensured Bruce has the best care 100% of the time.” Alongside providing care for her husband, she prioritizes the needs of their two young daughters, aged 13 and 11. Emma has three older step-daughters—Tallulah, Scout, and Rumer—from Bruce’s previous marriage to actress Demi Moore.
Though she is under fire from those unknown to the situation, Emma is adamant about her decisions on Bruce’s care. She noted, “It was a hard decision for us, but that was the safest and best decision, not just for Bruce, but for our two young girls.” Her dedication to keeping her family healthy and safe comes through clearly in everything she does and says.
As Emma told us in a recent interview, those experiences as a caregiver informed her vision for making this change. She highlighted an important statistic shared by Bruce’s neurologist: “Bruce’s neurologist shared a statistic that sometimes caregivers die before their loved one.” This unexpected announcement was a huge triggering moment for Emma that led her to get the help and community support she needed.
“I didn’t realize that. I really needed permission for someone to tell me that it’s OK to get help,” she said. Emma hopes that her newly published book, “The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path,” will provide similar encouragement to other caregivers. Her hope is that the book can be a tool and resource for others going through the same problems as they figure out the path forward.
Most importantly, Emma wants to highlight that caregivers who often feel attacked by people who don’t understand dementia through personal experience. She remarked, “I knew it would, which is why I shed the light on that, because I feel like caregivers are so judged.” As she explained, no two households with dementia are alike, and recognizing that nuance is important.
