In sharing her experience on becoming a caregiver, Emma Heming Willis, wife of actor Bruce Willis, has become an outspoken advocate for caregivers. This announcement follows over two years since her husband was diagnosed with frontotemporal dementia (FTD). This form of dementia, which is not related to Alzheimer’s, specifically affects the front and temporal lobes of the brain. Consequently, it produces remarkable improvements in social interaction and communication abilities. Heming Willis is the day-to-day caregiver to Bruce. She pours everything she has into not only making sure he’s safe and healthy at home, but managing all of the emotional fallout that comes from his diagnosis.
In an honest and open conversation about her experience, Heming Willis made it clear how greatly FTD has affected their family structure. Ever since Bruce’s diagnosis, she has curtailed things such as playdates and sleepovers for their two young daughters. This decision comes based on the need for improvement in creating a stable environment for Bruce and the children. We do deeply want to support them through this tough moment. “I really felt like I was so alone, so isolated, felt like what we were going through as a family… was so singular,” Heming Willis remarked, highlighting her struggle to cope with the situation.
29-year-old Ciarra Holiday, whose mother has FTD, shared similar feelings. She shared how hard it’s been to wrap her mind around the fact that her mother is no longer able to form words. It’s really cool except that in the mornings, I tend to space it. When I wake up every morning, I don’t want to believe that she’s sick. And then I remember that she can’t speak,” Holiday said as he described the emotional burden experienced by caregivers.
Teepa Snow, an occupational therapist and dementia care expert, has made essential resources for caregivers, like the ones who cared for Heming Willis and Holiday. As the founder of Positive Approach to Care, Snow teaches caregivers how to take care of themselves first and make their health a priority. “One of the hardest things to do is to recognize you’re in shock. You had no idea this was going to be what you’re taking on,” Snow advised. She underscored the importance of self-care, stating, “Work on your own health and well-being for just a second.”
Heming Willis has been vocal in her fight ever since her stepdaughter went public about her mental health and well being. She met Teepa Snow at the start of her caregiving journey and knew how crucial it was to access trusted resources. Her mission is to educate the world about FTD and all types of dementia. Her goal is to equip people with the tools to identify the signs and symptoms in their family and friends.
Bruce Willis has three daughters from his first marriage to fellow actor Demi Moore and two daughters with Heming Willis. The family unit has made adjustments to accommodate the changes Bruce’s condition has ushered in, but the emotional burden is heavy. Heming Willis noted that the shared experiences of grief and sadness resonate with many caregivers facing similar challenges: “It doesn’t matter where we came from, who we’re married to… that level of sadness, and grief, and anger… is just — that is one common thread that we all share.”
Now, as Bruce’s disease continues to advance, he struggles more and more with speech and movement. Dr. Bruce Miller, a neurologist specializing in dementia, stated, “I think increasingly with the illness, people say less, move less and eventually become — we use the phrase ‘mute.’” This statement underscores the harsh reality many families encounter as they navigate life with a loved one suffering from FTD.
Heming Willis keeps raising awareness and fighting for increased understanding of frontotemporal dementia. By sharing her family’s story, she hopes to inspire others to seek help and support while caring for their loved ones.
