Bruce Willis has frontotemporal dementia. But what is it?

Nearly a year after Bruce Willis’ family announced that he would step away from acting after being diagnosed with aphasia, his family says his “condition has progressed.”

In a statement posted Thursday, the 67-year-old actor’s family said Willis has a more specific diagnosis of frontotemporal dementia (FTD).

“While this is painful, it is a relief to finally have a clear diagnosis,” the statement posted to the Association for Frontotemporal Degeneration’s website reads. “FTD is a cruel disease that many of us have never heard of and can strike anyone.

Last March, Willis’ family said his aphasia had affected his cognitive abilities. The condition causes loss of the ability to understand or express speech. In Thursday’s statement, his family said communication challenges were just one symptom of FTD.

What is frontotemporal dementia?

The Association for Frontotemporal Degeneration describes FTD as a group of brain disorders caused by degeneration of the frontal and/or temporal lobes of the brain that affects behaviour, language and movement. Aphasia can be a symptom of it.

Dr. Morris Freedman, head of Baycrest’s division of neurology and professor at the University of Toronto’s Faculty of Medicine (Neurology), said people with primary progressive aphasia typically maintain good memory at the beginning and develop speech and language issues. But those with the behavioural variant start to develop “personality problems” — for example, name-calling, inappropriate touching and other actions not typical of the individual.

FTD tends to occur in younger people, especially those 45 to 60 years old, said Freedman, who is also the medical director for the Austin Centre for Neurology and Behavioural Support. Around 40 per cent of cases have a family history of FTD, and there are three major genes known to cause it, namely progranulin, c9orf72 and MAPT, all of which can be tested for.

People with FTD may also have associated diseases like Lou Gehrig’s disease, progressive supranuclear palsy and corticobasal syndrome, but not all do, nor is FTD determined to lead to diagnoses of other conditions.

Life expectancies for people with FTD can be reduced to six to eight years after symptoms, but some folks live much longer, said Freedman.

Diagnosis and treatments for FTD

Because those with FTD typically aren’t aware of their difficulties, they are often brought in to see specialists by their family members, Freedman said.

A specialist will examine their speech and language profile as it has certain characteristics with FTD, and will then examine their behaviour, Freedman said. Afterward, those with symptoms will undergo an MRI or CT scan for medical providers examine the frontal lobes of the brain.

For primary progressive aphasia, speech and language pathology interventions may be helpful, said Freedman, and for the behavioural variant there are some drugs that can help with symptoms.

There is no cure for FTD.

When asked if head trauma — say, from stunts — can trigger FTD, Freedman said trauma itself doesn’t cause the condition, but it may cause symptoms to show earlier.

FTD and primary progressive aphasia essentially reduce the ability of brain cells to function, but the brain can sometimes compensate using other parts of itself. If someone has a head injury strong enough to damage the brain, it has less capacity to do so, Freedman explained.

“Today there are no treatments for the disease, a reality that we hope can change in the years ahead,” the statement from Willis’ reads, adding that it can take years to get a proper diagnosis. “As Bruce’s condition advances, we hope that any media attention can be focused on shining a light on this disease that needs far more awareness and research.”

Bruce Willis’ family on his condition

Over a four-decade career, Willis’ movies had earned more than $5 billion (u.S.) at the worldwide box office. While beloved for hits like “Die Hard” and “The Sixth Sense,” the prolific actor had in recent years primarily featured in direct-to-video thrillers

“Bruce has always found joy in life — and has helped everyone he knows to do the same,” the family said Thursday. “It has meant the world to see that sense of care echoed back to him and to all of us. We have been so moved by the love you have all shared for our dear husband, father, and friend during this difficult time. Your continued compassion, understanding, and respect will enable us to help Bruce live as full a life as possible.”

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