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Bruce Willis’ diagnosis: What is frontotemporal dementia?

The American actor’s family said that Willis has been diagnosed with the neurodegenerative disease, which is quite unlike Alzheimer’s.

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Bruce Willis attends a movie premiere in New York.

Bruce Willis attends a movie premiere in New York on Friday, Oct. 11, 2019. Nearly a year after Willis’ family announced that he would step away from acting after being diagnosed with aphasia, his family says his “condition has progressed.” In a statement posted Thursday, the 67-year-old actor’s family said Willis has a more specific diagnosis of frontotemporal dementia.

Charles Sykes, Invision via Associated Press

The family of actor Bruce Willis said that he’s been diagnosed with frontotemporal dementia — and thanked the public for “all the outpouring of love and compassion for Bruce over the past 10 months.”

In a statement released Thursday, they said that the actor’s condition has worsened since they first revealed a diagnosis of aphasia in the spring of 2022. They said while the diagnosis is painful, it’s a “relief to finally have a clear diagnosis,” although there is no treatment.

The Deseret News explained the disease in 2012 when a well-known Utah economist was diagnosed: “The Association for Frontotemporal Degeneration, headquartered in Radnor, Pennsylvania, explains FTD as a group of disorders that share clinical features. Its ‘hallmark’ is gradual, progressive decline in behavior and/or language, usually in the mid-50s or 60s, though it has started as young as 21 and as old as 80. Those bearing its burden find it ever-harder to plan, to organize, to behave as they should or care for themselves.”

According to the association, the designation — often referred to as FTD — includes several brain disorders and may go by a number of names, including Pick’s disease. Johns Hopkins Medicine said “some people with FTD have tiny structures, called Pick bodies, in their brain cells. Pick bodies contain an abnormal amount or type of protein.”

Frontotemporal dementia has different symptoms than Alzheimer’s disease, which is the most common form of dementia. It usually begins earlier than Alzheimer’s, and may be diagnosed in one’s early 40s. Willis is 67. And it is “less common and lesser known” than Alzheimer’s, as well.

The disease “has a substantially greater impact on work, family and finances” compared to Alzheimer’s because it strikes sooner and may last longer, the association said.

Mayo Clinic said frontotemporal dementia typically impacts personality, behavior and language.

Frontotemporal dementia is marked by the progression of symptoms, including changes in behavior, language, movement or a combination. And it is different in different people, though it “brings an inevitable decline in functioning.” The progression can be fast — as little as two years — or take place over a couple of decades, the association reports.

Over the course of the disease, a person can lose the ability to plan. Behavior can change, including sometimes behaving inappropriately in social and other settings. The ability to communicate can be severely impaired.

Willis reportedly had trouble communicating, which led to the aphasia diagnosis. Aphasia, according to Rush University, is a language disorder with which 180,000 Americans are diagnosed each year. With aphasia, a person may struggle to speak, listen, read and write.

Willis’ family at that time said he would step “away from acting due to health issues,” USA Today reported.

While aphasia doesn’t impact a person’s intelligence, frontotemporal dementia is a neurodegenerative disease of the brain.

There is no clear cause or known risk factor, though risk could be higher in families with a history of dementia. Some believe trauma can also increase the risk.

The AFTD estimates there are about 50,000 to 60,000 people diagnosed with frontotemporal dementia in the U.S. The organization adds it is frequently misdiagnosed as Alzheimer’s, depression, Parkinson’s or a psychiatric condition, and it typically takes more than three years to get accurately diagnosed,” USA Today said.

While the progression cannot be stopped, there are some steps that help the quality of life. Medications are sometimes helpful, experts say, depending on where and how the brain is impacted. Among those who have the disease, pneumonia is a common cause of death.

In the statement, the family said that “Bruce always believed in using his voice in the world to help others, and to raise awareness about important issues both publicly and privately. We know in our hearts that — if he could today — he would want to respond by bringing global attention and a connectedness with those who are also dealing with this debilitating disease and how it impacts so many individuals and their families.”

They noted, as well, that Willis “always found joy in life — and has helped everyone he knows to do the same. It has meant the world to see that sense of care echoed back to him and to all of us. We have been so moved by the love you have all shared for our dear husband, father and friend during this difficult time.”