Bruce Willis Diagnosed With Frontotemporal Dementia: What to Know About the Incurable Brain Disorder

The actor's family has announced that his neurological condition has progressed and worsened.

After stepping back from acting last year when it was revealed that he was dealing with aphasia, Bruce Willis' neurological ailment has now progressed.

Bruce's wife, Emma, ex-wife, Demi Moore, and daughters Rumer, Scout, Tallulah, Mabel and Evelyn, shared a joint statement Thursday, announcing that the celebrated movie star's condition has progressed to frontotemporal dementia, also known as FTD.

"As a family, we wanted to take this opportunity to thank you all for the outpouring of love and compassion for Bruce over the past ten months," the statement read. "Your generosity of spirit has been overwhelming, and we are tremendously grateful for it. For your kindness, and because we know you love Bruce as much as we do, we wanted to give you an update."

So what exactly is frontotemporal dementia, and how does it manifest in those dealing with the condition? ET spoke with Dr. Allison Reiss, an Alzheimer's Foundation of America's Medical, Scientific and Memory Screening Advisory Board Member, and she explained more about the condition.  

"It's a group of diseases that have the common factor that the brain loses brain cells, brain cells die [and there is] neuro degeneration," Reiss explains. "We don't understand why, but they die in specific areas."

According to Reiss, the "hodgepodge of different things that have been put together" leads to "a lot of devastating consequences."

FTD can be challenging to diagnose. In Willis' case, his diagnosis came after he experienced aphasia, which is "a symptom where you have difficulty speaking."

"When a person has aphasia, we don't know why, so we look for the reason. I would speculate that, in Bruce Willis' case, he presented with difficulty speaking, and they had to figure out why," Reiss says. "... A person having aphasia does not necessarily mean that they have frontotemporal dementia."

Willis does have FTD, of which there are two primary types -- behavior variant frontotemporal dementia (bvFTD), which causes sometimes drastic changes in a person's behavior and personality, and primary progressive aphasia (PPA), which can dramatically impact a person's writing ability, language comprehension and communication. From what Reiss has seen in the media, she speculates that Willis is dealing with the latter form of FTD.

"The [brain cell] loss is in naming and comprehension. [People will exhibit] trouble with language... and difficulty saying words, understanding the meaning of words, and remembering and naming familiar objects," she says. "A lot of times, people with frontotemporal dementia can't think of the word, or they think of a close word, and they'll mix things up." 

"They can't get the words out, but they know what they want to say," Reiss continues. "As the disease progresses, you also lose the understanding of the meaning of words. You get less and less able to produce language and the language you produce may not make sense or come out the way that you want it to."

Ultimately, she says, everything "just gets more difficult" as "the problem spreads and gets worse."

"As it gets worse, you can't ignore it or deny it. You have to adjust as best you can to it," Reiss says. "... It just progresses and progresses until at the very end... you pretty much lose everything, which is so sad and tragic. The essence of self you can't reach anymore at the end."

According to the Alzheimer's Association, "Frontotemporal degeneration is inherited in about a third of all cases. Genetic counseling and testing are available now in individuals with family histories of frontotemporal degeneration. There are no known risk factors for any frontotemporal degeneration except for a family history or a similar disorder."

"We know so little about it. We just know that frontotemporal dementia is the most common type of dimension in younger people, like 40 to 60, and some of it is inherited," Reiss says. "There are inherited versions, but mostly it's just sporadic. It just comes on [in] certain people, and we don't have a reason, and we don't have a cause, and we don't have a treatment."

As Reiss points out, there is no cure for FTD, although medication and treatment can be employed to slow the progression of the disease, which usually presents in younger people whose health "overall may be robust."

"There's not much you could do about it. There definitely is speech therapy that can help," she says. "You want to keep encouraging the person to speak... We want people to keep living, be active, be with family, and do everything they can do to live their lives... enjoy family and community connections... [maintain] a healthy diet, don't smoke, no alcohol, no drugs. Some medications may help for depression or to calm people with behavioral issues."

Reiss notes that, ultimately, frontotemporal dementia "definitely does shorten" a person's lifespan.

"The average life expectancy from when you get the first symptoms is about eight to 10 years. The reason is that, as your brain stops working, a body without a brain can't maintain if you don't eat, if you don't move, if you don't have activity," she explains. "The human body was meant to be active, so if it just can't do anything anymore, you tend to get infections, pneumonia often at the end. Even though we have wonderful care people helping to maintain, people get sores and they get clotting because they're just lying there."

Even so, Reiss encourages families to maintain hope through the challenging times.

"To all the families, there really is hope that we can do something about this to disease," she says. "... I have so much belief in the research community and the new technologies that, if we put our minds to it and if we put our energies and efforts to it, we can find things. It's not impossible and I just want it to get done."

Finding treatments, and ultimately a cure, for the disorder is exactly what Willis' family believes he would want.

"Bruce always believed in using his voice in the world to help others, and to raise awareness about important issues both publicly and privately," his family's statement read. "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 and how it impacts so many individuals and their families."

"Bruce has always found joy in life -- and has helped everyone he knows to do the same. It has meant the world to see that sense of care echoed back to him and to all of us," the statement concluded. "We have been so moved by the love you have all shared for our dear husband, father, and friend during this difficult time. Your continued compassion, understanding, and respect will enable us to help Bruce live as full a life as possible."

For additional information/resources about Alzheimer’s and dementia visit the Alzheimer’s Foundation of America website.