The image of Bruce Willis, an athletic and wise-cracking movie star, struggling to remember his lines is a tough one. Progressive aphasia is frightening for anyone, but when it afflicts an actor who long displayed a quick wit and physical agility, it hits home in a visceral way.
Then there is the question: Was this hugely bankable star manipulated by those around him to continue working even when the time had come to step out of the spotlight and take care of himself? In the last few years, he has appeared in a remarkably high number of films. To get closer to answering that question, we need some understanding of aphasia, which can be a symptom of different aliments and have different variants with different results.
Reading the news stories — without having examined Willis or performed the necessary tests myself — suggests he is suffering from a primary progressive aphasia, which can be a symptom of early onset Alzheimer’s disease or a disorder called frontotemporal dementia.
His struggle seems to be one of communication, and not so much comprehension. Alzheimer’s patients, especially in the early going, are quite aware of their inability to remember this or that face or fact. It can be simultaneously painful and alarming to them. Connecting the dots in Willis’ case suggests he maintains a certain level of self-awareness. The condition has been described as degenerative, suggesting that a stroke or other sudden event was not a factor.
One crew member on a film set reportedly said that Willis once asked: “I know why you are here, and I know why you are here. But why am I here?” That painful question is common from millions of Alzheimer’s sufferers around the world. That is one of the most heartbreaking aspects of this degenerative disease — the patients feel themselves slipping away, sometimes before others sense it.
The aphasia that is caused by Alzheimer’s disease is called logopenic aphasia. It initially results in long pauses while patients seek the right words. Remembering and repeating long phrases is difficult because of the associated memory loss. Naturally, this would be especially hard for an actor. He might get through the first part of a line, but lose the thread before the end.
It’s a progressive condition and the cause remains obscure, and the treatments very limited. If Alzheimer’s is the underlying cause, the symptoms can wax and wane a little bit, but they never truly get better.
Frontotemporal dementia, the other major cause of primary progressive aphasia, has a nonfluent variant and a semantic variant. It would be hard to perform as an actor with the first one, because you have a hard time getting any words out. The semantic variant involves loss of vocabulary, such as calling a coffee cup “that thing,” and often associates with changes in personality and behavior. These language and personality changes can suddenly become obvious to those around the sufferer, while the patient lacks insight.
It may be that even with his condition, Willis could continue to have control and decision-making ability over his career, as other patients do. But each of these cases is unique. Reasoning and judgment abilities are preserved in early Alzheimer’s disease but can be affected in frontotemporal dementia.
We’ve seen in the past that when a movie star is afflicted with a disease, new awareness and public discussion about it can be helpful to other sufferers. One can only hope that, at the very least, this painful situation for Willis and his family will bring more attention to this little understood but terrifying condition.
