Actor Bruce Willis’ diagnosis of frontotemporal dementia has brought renewed attention to the disease, whose symptoms include changes in behavior, language and communication.
Willis’ family, including ex-wife Demi Moore, said in a statement Thursday that his aphasia diagnosis, which the family announced in March, had progressed to frontotemporal dementia. Willis is 67.
Frontotemporal dementia, or FTD, refers to a collection of disorders that primarily affect the frontal and temporal lobes of the brain. Diseases that fall under this umbrella are neurodegenerative, meaning they get worse over time.
Professor of Psychiatry and Behavioral Sciences at the John Hopkins School of Medicine, Dr. According to Paul Barton Rosenberg, there are generally two subdiagnoses.
“There is a behavioral form where people can change their personality and lose their inhibitions and social graces,” Rosenberg said. “Another primary is progressive aphasia, where people have trouble finding words or expressing themselves.”
In their Thursday statement, the Willis family said that “sadly, the challenges with communication are just one symptom of the illness Bruce faces.”
“Although it’s painful, it’s a relief to finally have a clear diagnosis,” the family wrote in their Instagram post.
Symptoms and Causes of Frontotemporal Dementia
Frontotemporal dementia is caused by a build-up of proteins in the brain, which can damage and shrink the frontal and temporal lobes.
Because these areas of the brain are associated with personality, behavior and language, Dr. According to Greg Day, the symptoms of a particular case of FTD depend on which area is most affected.
“Difficulties with language and comprehension, as well as misinterpretation of instructions, can be symptoms of FTD,” Day said. “But when proteins build up in the parts of the brain that control social cognition, abnormal behavior, such as acting out, disrespecting loved ones, losing empathy, motivation, and understanding, can all lead to symptoms.”
Abnormal motor function, such as problems with balance, vision or moving one side of the body, can also be a symptom.
Overall, many of the symptoms of FTD can be difficult to recognize in patients, and those with particular behaviors can be difficult to differentiate from psychiatric illnesses, Day said.
“It is understandable why the Willis family, which has been open about Bruce’s condition, is learning more specific information about aphasia months later,” he said.
Who is most likely to get FTD?
This type of dementia tends to present more often in younger people, especially those in their 40s, 50s and 60s, the two experts said.
“The disease tends to be seen a little earlier in life, which can make it difficult because this is an age where people have a lot of demands and responsibilities,” Day said. “They may have full-time jobs, partners, young children to look after. And when it affects language for someone who depends on it for a living, it will affect “
FTD is relatively rare,” according to a 2019 study, “with an estimated lifetime risk of 1 in 742.” The Mayo Clinic estimates that FTD is the cause of “about 10% to 20% of dementia cases,” making it rarer than Alzheimer’s.
The prevalence of the condition is uncertain, but estimates range from “15 to 22 per 100,000 people who are 45 to 64 years of age have FTD,” according to Mayo Clinic neurologist Bradley Bowe.
According to Bowe, approximately 50,000 to 60,000 people in the United States have FTD.
Little is known about the causes or risk factors associated with FTD.
“The reality is, we don’t have a complete understanding of the causes of FTD,” Day said. “The causes can generally be genetic, but then we also have exposures, things that happen to us, or habits we have.”
Rosenberg said it can sometimes seem like “coming out of the blue”.
Are there cures or treatments?
There are no medicines that can stop or slow the progression of FTD. Instead, treatment focuses on helping people manage symptoms, Rosenberg said.
“The main treatment for aphasia is speech therapy, which can be helpful,” he said.
It also helps keep the patient awake, Day said.
“For families, it is best to interact with loved ones, engage them in activities and keep them stimulated that they can do for them,” he said.
In general, the risk of FTD is lower in people who stay physically active, engage and stimulate their mind regularly and maintain healthy blood pressure and cholesterol levels, Day said.
He said that although research about frontotemporal dementia is ongoing, much more needs to be done to better understand the disease and increase public awareness. In this regard, the announcement of the Willis family is helpful, he said.
“The family has used this opportunity to do something caring, kind and altruistic to spread the news about this disease,” Day said. “This is a disease many people have never heard of, and maybe it can now help others get diagnosed sooner.”
