CLEARWATER, Fla. — The diagnosis of Bruce Willis is one an individual may have never heard of. But it's the reality his family is far from experiencing.
Frontotemporal dementia can affect behavior, language and movement, according to the Association of Frontotemporal Degeneration (AFTD).
With no cure, the symptoms only worsen as time goes by.
"There's this overall sense that your loved one is changing, and it doesn't make sense," Susan Dickinson, CEO of AFTD, explained.
Watching a loved one undergo symptoms can be frustrating and confusing.
Between 50,000 to 60,000 Americans are diagnosed with the disease, but it's likely higher because it's often undercounted and uncommon, Dickinson said.
The early stages don't impact memory loss as much as it does cognitive behavior. People with FTD may have trouble generating or understanding language.
In addition, one's executive functioning is impacted, meaning the ability to make judgments, have self-awareness or understand the consequences of an individual's actions.
For instance, someone with FTD may suddenly lose their social filter and make rude remarks without remorse.
Along with financial damage, behavioral changes can harm relationships.
News of Bruce Willis' diagnosis struck a chord for John O'Brien, a manager with O'Keefe's Tavern in Clearwater.
He took care of his mother as she underwent symptoms of Alzheimer's. His grandmother and aunt all had Alzheimer's, as well.
The restaurant and bar is the first to implement the "Dementia-Friendly Dining" program in the Tampa Bay area, O'Brien said. Staff is trained on how to best interact with those living with memory loss disorders.
"It was an easy, 'Yes' for me," O'Brien said. "It's really sad the way people just deteriorate when they have it. It's like they're normal one day, then they're just a shell of what they used to be."
The program was launched by Dennis Dulniak in honor of his wife Nancy, also known as Nana.
He was married to his wife for 47 years before her death in 2021. He also launched "Nana's Book Foundation," an effort to provide books about disabilities to public libraries and students in Title I schools.
Families affected by memory-related illnesses hope Bruce Willis and his diagnosis can advance awareness, but more importantly, lead to a cure.
"We know in our hearts that – if he could today -- he would want to respond by bringing global attention and a connectedness with those who are also dealing with this debilitating disease," the Willis family wrote in part in a statement.
It can take three and a half years to get a diagnosis, which can provide relief to loved ones searching for answers, Dickinson said.
Most people are diagnosed between the ages of 35 and 64, however, those in their 20s or 80s may also have it.