Robin Williams Secretly Suffered From Lewy Body Dementia: Understanding the Disease and How It Eventually Led to His Death

Actor did not commit suicide from depression

By Kendall Fisher Nov 03, 2015 5:20 PMTags
Robin WilliamsTodd Williamson/

Many believed that Robin Williams took his own life in 2014 after a long battle with depression, but in one of her first interviews since his death, his widow, Susan Schneider, argued that Diffuse Lewy Body Dementia (LBD) caused him to commit suicide.

"It was not depression that killed Robin," Susan told People magazine. "Depression was one of let's call it 50 symptoms and it was a small one."  

So how did this eventually lead to his death?

DLB is the second most common neurodegenerative dementia after Alzheimer's but also one of the most frequently misdiagnosed. It occurs when protein deposits called Lewy bodies develop in nerve cells in regions of your brain involved in thinking, memory and movement (motor control), according to Mayo Clinic. This build up causes a progressive decline in mental abilities, leading to fluctuations in mental status, hallucinations and impairment of motor function.

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The disease began taking its toll on Williams in the year leading up to his death, causing him to experience heightened levels of anxiety, delusions and impaired movement. In fact, Susan recalled one time in which a crippling anxiety attack led to a "miscalculation" with a door that left his head bloodied and muscles rigid.

And yet the doctors could not seem to pin point exactly what was wrong as many of the symptoms also parallel those attached to Alzheimer's and Parkinson's. Thus, Williams didn't have the medications and understanding to properly battle it.

"I know now the doctors, the whole team was doing exactly the right things," Susan told the publication. "It's just that this disease was faster than us and bigger than us. We would have gotten there eventually."

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Thus, Susan's goal is to help others struggling with LBD to prevent situations that could lead to suicide, as it did in Williams' case.

"I've spent this last year trying to find out what killed Robin. To understand what we were fighting, what we were in the trenches fighting and one of the doctors said, 'Robin was very aware that he was losing his mind and there was nothing he could do about it,'" she says.  

"This was a very unique case and I pray to God that it will shed some light on Lewy bodies for the millions of people and their loved ones who are suffering with it," adds Susan. "Because we didn't know. He didn't know."

Watch: E! Looks Back at Robin Williams in 1990