Bruce Willis’ diagnosis brings aphasia to forefront
Aphasia is a communication disorder that affects understanding and expression. It can make it difficult to speak, write, listen, and read. But despite its dire impact on people, aphasia is not a well-known condition. In fact, according to a 2016 survey by the National Aphasia Association (NAA), less than 10 percent of respondents knew what aphasia was.
But the announcement in April 2022 that Bruce Willis would be stepping away from acting following an aphasia diagnosis has raised awareness of the affliction, said Abby Franz, a speech pathologist and clinical instructor in the Department of Speech & Hearing Science at University of Illinois.
“I feel awful for the family and his situation and that he has that diagnosis,” Franz said. “But in 2016, the NAA conducted a survey and found only 8.8 percent of the respondents knew what aphasia was and correctly identified it as a language disorder. So certainly Bruce Wilson's diagnosis can bring awareness to aphasia. But it’s common. More than two million people are living with aphasia in the United States, and for only 8 percent of the general population to know what it is and know that it was a language disorder, that's pretty significant.”
Aphasia is an acquired communication disorder, Franz said, which means that it's something that happens during the course of a life. It's not something that is present from birth. It is an acquired neurogenic communication disorder, usually as a result of a stroke or some type of brain injury, she said.
There are many types of aphasia, and they are usually diagnosed based on which area of the language-dominant side of the brain is affected and the extent of the damage.
“Typically, it is something traumatic like a type of traumatic brain injury, either they've fallen, they've hit their head, they've been in a car accident, which has affected the area of the brain that controls our speech and language, or a sudden stroke that has left them with difficulty with speech and language,” Franz said.
“But there is another type of aphasia called primary progressive aphasia. That is a degenerative disease that is caused by a type of dementia—frontotemporal lobe dementia. It isn't a sudden onset change in language. It's a gradual deterioration of brain tissue in the frontal lobe of our brain that causes, over time, kind of your language to really deteriorate and comprehension of language to deteriorate.”
Franz did not want to speculate about whether Willis has primary progressive aphasia (PPA), but said what she read about his diagnosis lead her to believe he is afflicted with PPA.
“When you have a stroke, it just happens, like suddenly onset. So there wouldn't be this gradual deterioration” of what has been speculated to have happened to Willis, she said.
Primary progressive aphasia symptoms are akin to dementia. Franz said, with primary progressive aphasia, there would be difficulty with word finding, difficulty sometimes with even just the production of speech, or more effortful for them to even just formulate a sound. They may have a loss in just the fluency of speech as well as the comprehension of speech.
“Somebody who has primary progressive aphasia, if I showed him (a pen), he or she may not be able to name it, but then they also may not even be able to tell me what it does. So they lose that ability to even know this is a pen and we write with it,” she said.
As a speech language pathologist, Franz said she makes aphasia determinations based on how patients perform on certain tasks during a language assessment.
“We're also testing their comprehension of language. We're looking at their ability to follow simple directions, follow two-step directions. And we're looking also at their ability to write after a stroke or after a brain injury because sometimes those go hand-in-hand with the loss of language.”
That said, an aphasia diagnosis is not always without hope. With the help of rehabilitation intervention provided by a speech-language pathologist, people with aphasia from a stroke or other brain injury can improve. SLPs partner with people with aphasia and their families to improve communication skills and develop strategies to support their communication strengths, and may assist with using an augmentative and alternative communication speech devices for those individuals if needed.
However, Franz speculates that because Willis’ family said the actor would pull back from public appearances, she believes he has primary progressive aphasia, and that the prognosis for that is not promising. According to the NAA, the average life expectancy from onset of the disease is 8 to 10 years.
“It is that dire when you get that diagnosis,” Franz said. “It's a very slow progression of the loss of their communication and along with this kind of dementia too that goes along with it.”
Talking about PPA is “very personal” to Franz.
“My parents' best friend was diagnosed with primary progressive aphasia in 2017,” she said. “And he's still living. I see the professional side of it. But now I'm living it on a personal note. And it's been very hard.
“When he got the diagnosis, I had to do a lot of education with my family about it, especially my parents. Because this was their best friend, and he's been a part of my life since I was born. And you know, I had to educate them a lot about what primary progressive aphasia is and what it's going to look like at the end of life. So that is not a great diagnosis to have. So I understand, for the family, why they are probably wanting to shield Bruce Willis from being in the public eye.”
When a public figure such as Willis is afflicted, it often brings an opportunity to educate people about a disease or medical condition.
“The National Aphasia Association is a great website and a great reference for anybody to learn more about aphasia or just to understand more about what it is, and find support groups, within your local community,” Franz said. “It's a great reference and website to look for if you have a family member or know somebody who has been given the diagnosis of aphasia.”
For more information about aphasia, go to https://www.aphasia.org/