frontotemporal dementia replaces bruce willis' aphasia diagnosis

last march, the 67-year-old actor announced that he was taking a step back from acting because of aphasia, a devastating communications disorder.

by maija kappler

published feb 23, 2023

last updated feb 24, 2023

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5 minute read

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bruce willis attends the comedy central roast of bruce willis at hollywood palladium on july 14, 2018 in los angeles, california. (photo by rich fury/getty images)

actor bruce willis has been diagnosed with frontotemporal dementia, his family said. his wife emma heming and and their two young children, as well as his ex-wife demi moore and their three adult children, are helping the actor “live as full a life as possible,” the family said in a statement to people.

“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’ family said. “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.”

frontotemporal dementia is an umbrella term for several brain disorders. the frontal and temporal lobes, which control personality, language and behaviour, can atrophy, sometimes causing major changes in the way a patient acts and speaks. this can look like a loss of empathy and other major personality shifts, which can be difficult for caregivers and other people who spent time with the patient. it can also cause muscle spasms and diminish other motor functions.

frontotemporal dementia is sometimes misdiagnosed as alzheimer’s disease

while frontotemporal dementia is sometimes misdiagnosed as alzheimer’s disease, it tends to affect younger people: symptoms of frontotemporal dementia can often begin between the ages of 40 and 65. (willis will be 68 next month.)

“bruce always believed in using his voice in the world to help others, and to raise awareness about important issues both publicly and privately,” the family statement continued. “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.”

last march, willis’ family announced that the actor was stepping back from his career after being diagnosed with a brain condition.

“our beloved bruce has been experiencing some health issues and has recently been diagnosed with aphasia, which is impacting his cognitive abilities,” willis’ ex-wife demi moore said in an instagram statement on march 30, 2022. moore and willis were married for 13 years and have three children together. they’ve remained close since their split, and the family of five even quarantined together at the beginning of the pandemic.

what is aphasia?

aphasia affects the part of the brain that controls language and speech, typically on the left side. the condition caused by damage to that part of the brain, most commonly as the result of a stroke. it can also sometimes be caused by a brain tumour or head injury, and in those cases, there are also other cognitive issues, such as memory loss. there are about one million people living with aphasia in the u.s., and more than 100,000 canadians have the devastating language disorder. it affects about one in three stroke survivors.

aphasia causes difficulty speaking, writing, and sometimes understanding language. people with aphasia have trouble communicating in a way that can be extremely frustrating: they sometimes know what they want to say, but they can’t express it.

“aphasia is a communication problem that masks a person’s inherent competence,” according to the aphasia institute, and it can have “a devastating impact on human connection.”

the many faces of aphasia

there are several different kinds of aphasia. people with expressive aphasia (sometimes called broca’s aphasia) have trouble forming complete sentences or remembering certain words, which frequently causes them to pause or stop mid-sentence, behavioural neurologist dr. borna bonakdarpour told the new york times. sometimes people with this form will communicate in short, direct sentences like “want food.” it can be especially frustrating, the mayo clinic says, as they are generally aware that they aren’t speaking in full sentences, and want to speak normally.

people with receptive or comprehensive aphasia primarily have difficulty understanding other people, and experience frequent confusion or find it hard to follow a conversation. they might speak in long and complex sentences that don’t make a lot of sense or include made-up words. they also might not realize that what they’re saying doesn’t make sense to other people.

some people will experience both expressive and receptive aphasia simultaneously, while others may develop only one.

global aphasia is the most severe type, causing people to struggle with every kind of communication, including speaking, understanding, reading and writing. they may speak a few familiar words, but they have a lot of difficulty both understanding other people and being understood, and usually can’t read or write, according to the archives of physical medicine and rehabilitation’s guide to living with aphasia.

how is aphasia treated?

the first step in treating aphasia is to address the cause of the brain damage. aphasia itself can be treated with speech therapy, although outcomes can differ drastically depending on severity. many people make significant process with speech therapy, the mayo clinic reports, but very few return to their pre-diagnosis communication levels.

there are a number of different therapy methods. some will focus on a specific form of language, like verbs or sentence structure. it might involve memorizing synonyms for commonly-used words, the new york times says, or using flash cards or photos to re-learn certain words or phrases. the u.s. national aphasia association (naa) says it will sometimes suggest role-playing situations, like ordering a coffee. people with expressive aphasia might be encourage to sing rather than speak, in what’s called melodic intonation therapy: some people “sing it better than saying it,” the naa explains.

there are also steps family members or caretakers can take to make life easier for someone living with aphasia. the johns hopkins school of medicine recommends including the person with aphasia in conversations. the aphasia institute agrees. “people with aphasia do know what is going on,” the organization says. “even when the aphasia is severe, many are capable of participating in decisions that pertain to them if the appropriate support is provided — similar to giving a wheelchair or walker to someone who can’t walk.”

other tips include simplifying language when you are speaking to someone with aphasia, and encouraging communications of all kinds — drawing, writing or gesturing may be easier for them than talking. (having photos and maps around can also help.) reducing distractions can help too — having a radio or tv on may make it more difficult to communicate. eye contact can also help, as well as patience — give the person with aphasia lots of time to communicate, avoiding the instinct to correct them if they make a mistake.

this story was originally published on march 22, 2021.

readers who want to learn more about living with aphasia can consult the aphasia institute of canada.

maija kappler is a reporter and editor at healthing. you can reach her at mkappler@postmedia.com

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frontotemporal dementia replaces bruce willis' aphasia diagnosis

last march, the 67-year-old actor announced that he was taking a step back from acting because of aphasia, a devastating communications disorder.

frontotemporal dementia is sometimes misdiagnosed as alzheimer’s disease

steps to push back against stroke risk amid the pandemic