How Common Is Bruce Willis’s Frontotemporal Dementia?

Actor Bruce Willis was diagnosed with frontotemporal dementia (FTD), his family shared in a statement Thursday.

Last year, Willis retired from acting after being diagnosed with aphasia—the loss of ability to understand or express speech. The Willis family said his condition has progressed and they now have the more specific diagnosis of FTD.

“FTD is a cruel disease that many of us have never heard of and can strike anyone,” Willis’s family wrote in a statement. “While this is painful, it is a relief to finally have a clear diagnosis.”

FTD, which is also called frontotemporal lobar degeneration and Pick’s disease, occurs when there is damage to the nerve cells in the frontal and temporal lobes of the brain. This can cause people to exhibit unusual behaviors, difficulty communicating, emotional problems, and trouble walking.

FTD Is One of Many Types of Dementia

According to the National Institute on Aging, there are four types of dementia: Alzheimer’s disease, Lewy body dementia, vascular dementia, and frontotemporal dementia. However, the Alzheimer’s Association notes several other conditions that can cause dementia, including Creutzfeldt-Jakob disease, Huntington’s disease, normal pressure hydrocephalus, posterior cortical atrophy, Parkinson’s disease, and Korsakoff syndrome.

About 50,000 to 60,000 people are diagnosed with FTD in the U.S. each year, though this is likely a vast undercount, according to Matt Ozga, Content and Media Relations Manager at the Association for Frontotemporal Dementia. FTD is about as common as early-onset Alzheimer’s disease in people 45 to 65 years old. But in the grand scheme of dementia diseases, it’s far less prevalent than Alzheimer’s disease, which affects about 6 million Americans when people older than 65 are included.

“FTD is notoriously difficult to diagnose, as its symptoms frequently overlap with those found in depression, bipolar disorder, and other psychiatric conditions,” Ozga told Verywell in an email. “Because FTD tends to strike at younger ages…people may not suspect that that dementia is at play; most people associate dementia with old age.”

One of the first signs of Alzheimer’s disease—the most common form of dementia in the U.S.—is loss of memory, Nicole Purcell, DO, MS, Senior Director of Clinical Practice at the Alzheimer’s Association, told Verywell in an email. People with FTD, on the other hand, tend to retain their memory relatively well.

“They may become more impulsive, more reckless, more disinhibited,” Ozga said. “A hugely troubling and sadly common symptom of behavioral variant FTD is money mismanagement; people with FTD may begin spending lavishly on frivolous items that they cannot afford, bankrupting their family without their knowing it.”

What Is the Prognosis of FTD?

There is no cure for FTD. Some medications can be used to treat symptoms of FTD, such as SSRIs for managing depression and anti-psychotics for treating behavioral problems. But there are no FDA-approved treatments specifically for FTD.

About 60% of cases are considered “sporadic FTD,” meaning there is no clear reason or cause for the condition. The rest of people living with FTD tend to have a history of neurodegenerative disease in their family. There are various genetic variations that are associated with FTD—testing for those variations in people with a family history could give them a sense of their relative risk for diagnosis.

Many people diagnosed with FTD are younger than 60 and are still in their prime earning years or have families to raise. The effect on one’s finances, Ozga said, “can be ruinous.”

“Watching a loved one being taken from you slowly in front of your eyes—or being that person yourself—is a uniquely devastating experience,” Ozga said.

Each person will progress through FTD in different ways and at different paces. People who are living with dementia can partake in clinical trials to help progress researchers’s understanding of the condition.

“For anyone diagnosed with Alzheimer’s or another form of dementia like FTD, it’s important to know that you can live a meaningful and productive life after diagnosis,” Purcell said. “You can remain active and take part in activities you enjoy. You can work with family and friends to plan for the future and educate others about the disease.”