Emma Heming Willis is sharing new details about her journey as caregiver for her husband, actor Bruce Willis, who was diagnosed more than two years ago with frontotemporal dementia, known as FTD.
Heming Willis, 49, is the author of a new book, "The Unexpected Journey: Finding Strength, Hope and Yourself on the Caregiving Path," out Sept. 9. She told ABC News' Diane Sawyer she hopes the book helps give caregivers a roadmap and not feel as alone as she did when her husband was diagnosed with FTD, a type of dementia that impacts one's personality and ability to communicate and may cause behavioral changes, according to the Centers for Disease Control and Prevention.
"I really felt like I was so alone, so isolated, felt like what we were going through as a family, what Bruce was going through, was so singular," Heming Willis, who announced her husband's diagnosis publicly in 2023, told Sawyer in the ABC special "Emma & Bruce Willis: The Unexpected Journey."
Heming Willis, who shares two young daughters with Willis, said that after Willis' diagnosis, she worked 24/7 to care for him and keep him safe in their home, while also limiting activities like playdates and sleepovers for their daughters.
"I didn't know if parents would feel comfortable leaving their child at our home, so, again, not only was I isolated, I isolated our whole family. You know, the girls were isolated too, and that was by design, I was doing that," Heming Willis said. "It was a hard time. It was a really hard time."
The model and entrepreneur said it was only after her stepdaughter, one of Willis' three daughters with ex-wife Demi Moore, told her she was concerned about her, that she reached out for help.
One of the first caregiving resources Heming Willis said she found and connected with was Teepa Snow, the founder of Positive Approach to Care and an occupational therapist and dementia care expert.
Here's how to watch "Emma & Bruce Willis: The Unexpected Journey." The ABC News special airs Tuesday, Aug. 26, at 8 p.m. ET on ABC. Stream it the next day on Disney+ and Hulu.
Snow told Sawyer that she advises people in situations like Heming Willis to do their best to take care of themselves.
"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 said. "Work on your own health and well-being for just a second."
Dementia -- an umbrella term for a decline in mental abilities such as thinking, memory, and decision-making -- impacts millions of Americans and their families.
Emma Heming Willis talks caring for caregivers following deaths of Gene Hackman, wifeFor loved ones of people with FTD, the cost of caregiving can be what Heming Willis described as "astronomical," costing an average of nearly $120,000 per year, according to a 2017 estimate published in the journal Neurology.
Most patients with FTD live an average of five to eight years after diagnosis, with the disease eventually diminishing the muscles that control breathing, according to Dr. Bruce Miller, a California-based neurologist and leading researcher on FTD.
"I think increasingly with the illness, people say less, move less and eventually become -- we use the phrase 'mute,'" Miller told Sawyer. "They stop talking all together."
Ciarra Holiday, a 29-year-old who shared her caregiving story with ABC News, said she struggles to accept that her mom, who has FTD, can no longer talk.
"It's so interesting because in the mornings, I forget. I wake up and I forget that she's sick. I forget she can't talk. I forget that most day[s] she outputs like a 2-year-old. I forget I can't just call her and ask her for advice," Holiday said. "I'm 29 years old and my mom is in frontotemporal dementia."
Heming Willis told Sawyer she hopes her book can be a roadmap for caregivers like Holiday and for people who may not yet know the journey they will go on caring for a loved one down the road.
The number of people worldwide with dementia could triple by 2050, according to an estimate published in the medical journal The Lancet.
"I get to connect with so many different people from all different walks of life," Heming Willis said. "It doesn't matter where we came from, who we're married to, you know, that level of sadness, and grief, and anger, and the resentment. And all this, it is just -- that is one common thread that we all share, and I think that there is something so beautiful in that."
Bruce Willis diagnosed with dementia, family announcesHeming Willis also offers in her writing and public advocacy a roadmap for how caregivers can receive support, including by making a list of the small, practical things that could help them get through the day so they can hand it to people who offer to help.
She also wants more people beyond caregivers to learn about FTD and other types of dementia so they can recognize signs and symptoms in loved ones and get help early on.
"That is the whole motivation for me to raise awareness about this disease, because we want families, we want people to be able to be diagnosed earlier, when they can participate in these trials," Heming Willis said, referring to groundbreaking clinical trials underway to try to find ways to prevent, treat and cure dementia.
Here's how to watch "Emma & Bruce Willis: The Unexpected Journey." The ABC News special airs Tuesday, Aug. 26, at 8 p.m. ET on ABC. Stream it the next day on Disney+ and Hulu.
