The condition typically starts between the ages of 45 and 65 and is the most common form of dementia for people under 60, according to Johns Hopkins Medicine. Willis is 67.
Willis’ family had first announced last March that he had been diagnosed with aphasia, which affects a person’s ability to communicate. While aphasia typically happens after a stroke or head injury, it can also start gradually because of a degenerative brain disease.
“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 [known as FTD],” Willis’ wife, Emma Heming Willis, said in a family 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.”
“FTD is a cruel disease that many of us have never heard of and can strike anyone. For people under 60, FTD is the most common form of dementia, and because getting the diagnosis can take years, FTD is likely much more prevalent than we know,” Heming Willis added. “Today there are no treatments for the disease, a reality that we hope can change in the years ahead. 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.”
Frontotemporal dementia strikes the brain’s frontal and temporal lobes, causing parts of them to atrophy. With that shrinking can come speech and emotional issues, walking and swallowing problems, muscle spasms and changes in personality. These issues worsen with time.
“Bruce always believed in using his voice in the world to help others, and to raise awareness about important issues both publicly and privately,” Heming Willis said. “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.”
In a statement, the Alzheimer’s Association said “The news of [Willis’] diagnosis is devastating for movie fans around the world, but his transparency will also be meaningful for millions who are all too familiar with the crushing realities of other forms of dementia, including Alzheimer’s disease.”
According to the Mayo Clinic, people with aphasia may speak in short or incomplete sentences, speak in sentences that don’t make sense, substitute one word for another or one sound for another, speak unrecognizable words, not understand other people’s conversation or write sentences that don’t make sense.
“Bruce has always found joy in life – and has helped everyone he knows to do the same,” Heming Willis noted. “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. Your continued compassion, understanding and respect will enable us to help Bruce live as full a life as possible.”
The Alzheimer’s Association has more on frontotemporal dementia.
SOURCE: Emma Heming Willis, statement, Feb. 16, 2023; Alzheimer’s Association
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