Actor Bruce Willis made a shocking announcement in the spring of 2022: He was stepping away from acting because he had been diagnosed with aphasia, a disorder that affects the ability to communicate.

Recently, his family shared a more specific diagnosis: Frontotemporal dementia (FTD).

What is frontotemporal dementia?

Frontotemporal dementia or frontotemporal degeneration is a type of dementia caused by nerve cell loss in the brain’s frontal or temporal lobes.

When these areas of the brain are affected, it can result in behavior changes or increasing difficulty communicating or understanding language.

There are three types of FTD: behavioral variant frontotemporal dementia (bvFTD), primary progressive aphasia (PPA) and dementia associated with movement disorders.

“It can also be seen associated with Parkinson's or Parkinson's plus syndromes, and even ALS (amyotrophic lateral sclerosis),” said Nicholas Mathenia, D.O., neurologist with Edward-Elmhurst Health.

FTD is relatively uncommon, affecting an estimated 50,000 to 60,000 people in the U.S.

What causes frontotemporal dementia?

It’s not known what causes FTD, though genetic variants play a role in some cases. People who have a family history of dementia—the only known risk factor at this time—are more likely to develop it themselves.

Frontotemporal dementia is most commonly diagnosed in people age 45 to 64, though it has developed in people ranging in age from 21 to 80.

What are the symptoms of FTD?

Frontotemporal disorders can be difficult to diagnose, as it is somewhat rare, and the symptoms can be similar to depression, Alzheimer’s disease, Parkinson’s disease or other psychiatric disorders.

Depending on the type of FTD, people may notice changes in a loved one’s behavior and personality. They may say or do things that are out of character. They may lose interest in activities or have trouble managing day-to-day tasks and work obligations. Some struggle to speak, write or understand what other people say.

When the disorder develops in younger people, it can look like depression or another psychiatric disorder. When it occurs in older people, it’s sometimes mistaken for Alzheimer’s or Parkinson’s disease.

Because FTD affects a different part of the brain than Alzheimer’s, memory loss is not a prominent symptom initially.

Neurologists use a combination of imaging, such as an MRI, along with the patient’s symptoms and genetics to diagnose FTD.

Is there a treatment for frontotemporal dementia?

Just like with Alzheimer’s, there is no cure or treatment to reverse the progression of the disorder. Most treatment focuses on easing symptoms to improve quality of life.

How quickly the symptoms progress varies, from 2 to 20 years. Most people live 7 to 13 years after symptoms begin.

If you or a loved one appear to have early symptoms of FTD, make an appointment with your primary care physician.

Edward-Elmhurst Health’s neuroscience experts provide world-class care for diseases, disorders and injuries of the brain, spinal cord and nervous system. Learn more.