NEW YORK — A great deal of media coverage of actor Bruce Willis’ medical condition, frontotemporal degeneration, was inaccurate, revealing the public’s limited knowledge of the disease, new research has revealed.
In 2022, Willis’ family released a statement saying that he had been diagnosed with aphasia, an acquired language impairment, and would retire from acting.
Ten months later, the family issued another statement indicating doctors had diagnosed Willis with a more specific condition, frontotemporal degeneration.
This resulted in an explosion of media coverage, as prominent news outlets produced stories describing frontotemporal degeneration to a public largely unfamiliar with the disease.
A new paper in the journal Innovation in Aging, published by Oxford University Press, showed that the media misconstrued the disease. Rather than describing how frontotemporal degeneration was discovered to be the underlying source of Willis’ aphasia, many reports described his aphasia as “progressing into” frontotemporal degeneration, implying they are two different disorders.
Norah O’Donnell put it on CBS evening news: “His family says that has progressed into frontotemporal dementia, which impacts personality, behaviour, and language.”
Similarly, Entertainment Tonight reported that the family “… revealed that his brain disease has progressed to frontotemporal dementia.”
This is inaccurate. His aphasia did not turn into frontotemporal degeneration. His aphasia was a symptom of frontotemporal degeneration and after ten months his doctors had figured out the underlying condition, the research noted.
Why did journalists make this mistake? The paper speculated that aphasia developing into something else made for a better narrative: an esoteric and complicated story about diagnostic clarification is not nearly as interesting as a story of a movie star suffering further hardship.
“Given the confusion surrounding frontotemporal degeneration, the courageous disclosure by the Willis family is a model for educating the public about this still hidden disease,” said Steven M Albert, the editor-in-chief of Innovation in Aging, which published the paper.
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