Bruce Willis' family missed these early signs of his dementia, daughter says

Tallulah Willis is reflecting on dad Bruce Willis’ health struggles.

In February, the 68-year-old actor’s family revealed that he had been diagnosed with frontotemporal dementia, after first announcing in March 2022 that he would be retiring from acting after his aphasia diagnosis, which affects a person’s ability to express and understand written and spoken language.

The “Die Hard” star and Demi Moore’s 29-year-old daughter opened up about how she knew something was wrong with her father in an emotional essay for Vogue.

“My family announced in early 2022 that Bruce Willis was suffering from aphasia, a brain-mediated inability to speak or to understand speech, and we learned earlier this year that that symptom was a feature of frontotemporal dementia, a progressive neurological disorder that chips away at his cognition and behavior day by day,” Tallulah Willis wrote, adding that she had suspected a potential illness “for a long time.”

“It started out with a kind of vague unresponsiveness, which the family chalked up to Hollywood hearing loss: ‘Speak up! ‘Die Hard’ messed with Dad’s ears.’” she wrote. “Later that unresponsiveness broadened, and I sometimes took it personally. He had had two babies with my stepmother, Emma Heming Willis, and I thought he’d lost interest in me.”

Bruce Willis shares Tallulah, Scout, 31, and Rumer, 34, with ex-wife Moore. He is also father to Mabel, 11, and Evelyn, 9, with wife Emma Heming Willis.

“Though this couldn’t have been further from the truth, my adolescent brain tortured itself with some faulty math: I’m not beautiful enough for my mother, I’m not interesting enough for my father,” Tallulah Willis continued, also touching on her own issues with body dysmorphia and a borderline personality disorder diagnosis.

She continued by sharing how in recent years she was in denial about her father’s health declining due to her own health issues, which also included suffering from anorexia nervosa and an ADHD diagnosis.

Throughout all this, she wrote, “my dad was quietly struggling.”

“All kinds of cognitive testing was being conducted, but we didn’t have an acronym yet,” she said. “I had managed to give my central dad-feeling canal an epidural; the good feelings weren’t really there, the bad feelings weren’t really there.”

But in the summer of 2021, it “painfully” hit her that her father’s health was declining. It happened when she was at a wedding on Martha’s Vineyard and the bride’s father gave a moving speech.

“Suddenly I realized that I would never get that moment, my dad speaking about me in adulthood at my wedding. It was devastating,” she recalled. “I left the dinner table, stepped outside, and wept in the bushes.”

Now in her own recovery, Tallulah Willis said that she has the tools to be present in her life “and especially in my relationship with my dad.”

“I can bring him an energy that’s bright and sunny, no matter where I’ve been,” she shared, adding that in the past she was afraid of “being destroyed by sadness.”

“I can savor that time, hold my dad’s hand, and feel that it’s wonderful. I know that trials are looming, that this is the beginning of grief, but that whole thing about loving yourself before you can love somebody else — it’s real,” she explained.

Tallulah Willis also shared how when she visits her famous father, she takes lots of photos and looks at things from a new perspective. She also saves every voicemail from him on a hard drive.

“I find that I’m trying to document, to build a record for the day when he isn’t there to remind me of him and of us,” she shared. “These days, my dad can be reliably found on the first floor of the house, somewhere in the big open plan of the kitchen-dining-living room, or in his office.”

She wrote that his dementia has not affected his mobility and that he still remembers who she is “and lights up when I enter the room.”

“He may always know who I am, give or take the occasional bad day,” she wrote, noting that one difference between frontotemporal dementia and Alzheimer’s disease is, “at least early in the disease, the former is characterized by language and motor deficits, while the latter features more memory loss.”

Amid the action star's diagnosis, Tallulah Willis is now focusing on her family's wellbeing and how she can make her dad more comfortable. After sister Rumer welcomed her daughter, Louetta, earlier this year, she is soaking it all in.

“There’s this little creature changing by the hour, and there’s this thing happening with my dad that can shift so quickly and unpredictably. It feels like a unique and special time in my family, and I’m just so glad to be here for it,” she concluded.

Dr. Jagan Pillai, neurologist with Cleveland Clinic Lou Ruvo Center for Brain Health, previously told TODAY.com that the life expectancy for someone with frontotmeporal dementia depends on the parts of the brain affected, how severely they are affected and the rate of disease progression.

Meanwhile, the Cleveland Clinic noted that the average life expectancy after a diagnosis of FTD is 7.5 years, while the Association for Frontotemporal Degeneration gave a range of 7 to 13 years.

This article was originally published on TODAY.com