Nearly a year after Bruce Willis’ shock decision to retire, the actor’s family has revealed a devastating update.

Last week, the news emerged that Willis’ debilitating symptoms of aphasia, a neurological symptom of impaired speech, has progressed. His symptoms now include frontotemporal dementia, a condition often seen in frontotemporal lobar degeneration (FTLD). There are two distinct types of FTLD – primary progressive aphasia (PPA) and behavioral variant frontotemporal dementia (bvFTD).

Eventually, this, according to Amy Sanders, MD, director of the Hartford HealthCare Ayer Neuroscience Institute Memory Care Center, will greatly limit his ability to talk and likely permanently affect his behavior.

“Often, when a person’s initial symptoms involve speech or behavior changes, as time passes, they may eventually show signs and symptoms of the behavioral variant syndrome also. This is probably what has happened to Mr. Willis,” Dr. Sanders explains.

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Understanding frontotemporal lobar degeneration

Someone with bvFTD often shows striking changes in personality and behavior, such as:

  • Apathy, or a lack of interest or enthusiasm
  • Disinhibition, typically socially inappropriate behavior like speaking too loudly, making hurtful or insensitive remarks, or more sociopathic behavior like shoplifting, gambling or assault
  • Obsessive rigidity
  • Lack of awareness of personal hygiene

“People often seem cold and without empathy, often quite unaware of the impact their behavior has on others, including their loved ones,” Dr. Sanders says.

Anyone with PPA, on the other hand, will experience trouble with speaking or understanding conversation. Aphasia is actually a symptom rather than a disease itself. Aphasia is often caused by stroke. In patients with FTLD, the aphasia is caused by underlying neurodegenerative pathology affecting one of the language centers in the frontal or temporal lobes in the brain.

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No cure or treatment

Patients like Willis who have FTLD face a progressive loss of abilities. There is no cure or disease-modifying treatment for the condition, Dr. Sanders notes.

“Families and loved ones of someone with FTLD can best help by understanding the changes in their personality and behavior and learning how to respond to them in constructive ways,” she says. “These steps can reduce frustration and help provide the best care for a person with FTLD.”

While impossible to predict how long someone with FTLD will live, Dr. Sanders says experts expect patients will live five to seven years. Survival, she adds, can range from a few years to a few decades.