The image of Bruce Willis, an athletic and wise movie star, struggling to remember his lines is a difficult one. Progressive aphasia is frightening to anyone, but when it strikes an actor who has demonstrated quick intelligence and physical agility for so long, it gets home in a profound way.
Then there’s the question: Has this super banking superstar been manipulated by those around him to keep working even when it’s time to step out of the spotlight and take care of himself? In the past few years, he has appeared in a significant number of films. To get close to answering this question, we need some understanding of aphasia, which can be a symptom of different symptoms and have different variants with different outcomes.
Reading the news stories—without examining Willis or running the necessary tests myself—suggests that he has primary progressive aphasia, which could be a symptom of early Alzheimer’s disease or a disorder called frontotemporal dementia.
His struggle seems to be a communication struggle, not a great deal of understanding. Alzheimer’s patients, especially in the early stages, are fully aware of their inability to remember this or that face or truth. It can be painful and annoying for them at the same time. Connecting the dots in Willis’ case indicates that he maintains a certain level of self-awareness. The condition was described as degenerative, indicating that a stroke or other sudden event was not a factor.
A crew member reportedly said on set that Willis once asked, “I know why you’re here, and I know why you’re here. But why am I here?” This agonizing question is common to millions of Alzheimer’s patients around the world. This is one of the most heartbreaking aspects of this degenerative disease – patients feel like they are slipping away, sometimes before others feel it.
Aphasia caused by Alzheimer’s disease is called aphasia. It initially results in long pauses as patients search for the correct words. It is difficult to remember and repeat long sentences due to the accompanying amnesia. Naturally, this will be especially difficult for the actor. It may pass through the first part of the line, but it loses the thread before the end.
It is a progressive condition and the cause is still a mystery, and treatments are very limited. If Alzheimer’s disease is the underlying cause, symptoms can diminish and fade a little, but they never get better.
Frontotemporal dementia, the other major cause of primary progressive aphasia, has a non-fluent variant and a semantic variant. It would be difficult to take on the role of the actor with the first actor, because you find it difficult to get any words out. The semantic variable includes a loss of vocabulary, such as naming a coffee cup “that thing”, and is often associated with changes in personality and behaviour. These language and personality changes can suddenly become apparent to those around the patient, while the patient lacks insight.
Perhaps even with his condition, Willis can continue to be in control and decision-making throughout 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 has an illness, new awareness and public debate about it can be beneficial to those who suffer from it. One can only hope, at the very least, that this agonizing situation for Willis and his family will draw more attention to this terrifying and slightly understandable case.
Keith Fossell is director of the Mary S. Easton Center for Alzheimer’s Disease Research at the University of California.