Hollywood actor Bruce Willis has captivated audiences worldwide. He is known for his roles in the comedy drama series, Moonlighting and in films including Die Hard and Pulp Fiction. Bruce first married Demi Moore in 1987 and later Emma Heming in 2009. He has five daughters between both of them. In recent years, Bruce has been absent from the spotlight. In 2022, he was diagnosed with aphasia which progressed to Frontotemporal Dementia. Frontotemporal Dementia (FTD) is a neurodegenerative disease, affecting the frontal and temporal lobes of the brain. These areas are responsible for personality, behavior and language. Often FTD is misdiagnosed. FTD onset usually occurs between 40 and 65 years old. Recently, ABC aired a special, Emma and Bruce Willis: The Unexpected Journey where Emma shares the heartbreaking story of Bruce’s diagnosis, their new reality and what she and their family have faced during the care giving process. Her memoir, The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path launches this September.
Bruce's first symptoms were difficulties with language.. The language difficulties were thought to be reflective of his childhood stutter. But soon, alarming warning signs were present. Bruce’s warm personality changed, he lost interest in things he once loved and he began skipping out on family outings. Emma described the changes: “For someone who is very talkative and very engaged, he was just a little more quiet. When the family would get together, he would kind of just melt a little bit.” He was also unable to recognize emergency situations such as if the smoke detector went off. Emma now had to worry about not only his, but their children’s safety.
With Bruce’s diagnosis, life changed. "The future we imagined simply vanished, and I was left trying to hold my family together, raise our two young daughters, and care for the man I love while navigating a disease I barely understood." Emma began learning the ropes. She began implementing Bruce’s needs. Recently, she made the difficult decision to move Bruce to a separate home for safety and treatment. She knew Bruce would not want his daughters to live in a home that was tailored to his needs. He would want them to live as normal as possible. Despite this decision, the family is still very much involved and they spend a lot of time in the house Bruce lives in.
Emma is dedicated to raising awareness on this debilitating disease. The information and resources offered when Bruce was diagnosed were slim. She advocates for caregiver support and promoting research. She has spoken at the Association for Frontemporal Degeneration about how individuals can make a difference to help develop treatment and find a cure for FTD. In May 2025, Emma received the Care giving Award for her “outstanding work in advocating for unpaid family caregivers” at Maria Shriver’s Women’s Alzheimer’s Movement luncheon.
During a time of illness, love and family support is crucial. The love and family support from Bruce’s family shines through in his story. Emma is a dedicated wife and mother. She is dedicated to getting the best care and treatment while also raising awareness on this disease. We are grateful that Emma is shining a light on FTD, the struggles of caregivers and the importance of family and friends when facing a life changing diagnosis.
References:
2. https://www.theaftd.org/posts/front-page/emma-heming-willis-honored-with-caregiving-award/
