Actor Bruce Willis has frontotemporal dementia; here's how the brain disorder impacts people

Bruce Willis has been diagnosed with a form of dementia less than a year after retiring from acting due to his battle with aphasia.

Frontotemporal dementia, or FTD, is a group of disorders that occur when nerve cell loss in the frontal and temporal lobes of the brain causes the lobes to shrink, according to Johns Hopkins Medicine. It is a common cause of dementia, and can affect behavior, personality, language and movement.

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Willis, 67, grew up in South Jersey before embarking on a 40-year acting career, starring in hit films like "Die Hard," "Pulp Fiction" and "The Sixth Sense." In March, Willis' family said he would be stepping away from acting due to his initial diagnosis of aphasia, a neurological condition affecting more than 2 million people in the U.S.

His family revealed his updated diagnosis Thursday.

"Since we announced Bruce's diagnosis of aphasia in spring 2022, Bruce's condition has progressed and we now have a more specific diagnosis: frontotemporal dementia," Willis' family said in a statement. "Unfortunately, challenges with communication are just one symptom of the disease Bruce faces. While this is painful, it is a relief to finally have a clear diagnosis."

One of the most common types of FTD is primary progressive aphasia, or PPA, which causes difficulty in communicating. Patients with aphasia may experience struggles with speaking or understanding language. Another common form of FTD is behavior variant, or bvFTD, which affects behavior and personality.

Though only rough estimates are available, there may be 50,000 to 60,000 people with bvFTD or PPA in the United States, according to the Alzheimer's Association. FTD is the most common form of dementia to strike at a younger age, with the first symptoms most often appearing between ages 40 and 65.

Common FTD symptoms include dramatic personality changes, impaired judgment, emotional withdrawal, frequent mood changes, an inability to use language and increased dependence. Symptoms usually start gradually before progressing steadily or rapidly. 

There is not a singular test used to diagnose FTD, but those who notice subtle changes in behavior or language skills are urged to seek a health care provider as early as possible. Routine blood tests and physical exams may then be performed to rule out other conditions with similar symptoms.  

The cause of FTD is currently unknown, though researchers have linked certain FTD subtypes to gene mutations. A family history of FTD is the only known risk factor for these diseases, but most people with FTD have no family history of it or other forms of dementia.

There are no treatments currently available to cure or slow the progression of FTD, but medicines may be prescribed to treat symptoms. People can live for years with FTD, but they may come to need constant care as it progressives.

"FTD is a cruel disease that many of us have never heard of and can strike anyone," the Willis family said in their statement. "As Bruce's condition advances, we hope that any media attention can be focused on shining a light on this disease that needs far more awareness and research."

Willis' family includes his two children with his wife, Emma – Mabel, 10, and Evelyn, 8 – as well as three adult daughters from his prior marriage to actress Demi Moore – Rumer, 34, Scout, 31, and Tallulah, 29.

Although Willis has retired from acting, he appeared in the sequel "Detective Knight: Independence," which was released last month. He also is in the upcoming action film "Assassin," which will premiere in March.