What Robin Williams' Widow Wishes Everyone Knew About Lewy Body Dementia

When Robin Williams died by suicide in 2014, this tragedy came not long after the popular comedian received a diagnosis of Parkinson's disease. Williams had been experiencing a number of symptoms that included severe memory loss, changes in his personality, and significant movement problems, along with depression and other issues. 

However, following his autopsy, it was discovered that Parkinson's disease was not the cause of Robin Williams' patchwork of symptoms. Rather, he had a condition called Lewy body dementia (LBD). When Williams' widow Susan Schneider Williams learned what had really been at the root of her husband's symptoms, she described the revelation as learning the true identity of her husband's killer — a terrorist in his brain, per CNN.

People with dementia experience a deterioration of memory function and reasoning due to brain injury or disease. Alzheimer's is the most common form of dementia, followed by the two types of Lewy body dementia, which include Lewy body dementia and Parkinson's disease dementia. Lewy body dementia is often misdiagnosed as Parkinson's disease because the two have overlapping symptoms, notes CNN.

Schneider Williams said that learning of her husband's true diagnosis was when her healing finally began (via CNN). She has since become an advocate for Lewy body dementia awareness and has helped establish the Lewy Body Dementia Fund, which provides grant money for Lewy body dementia research.

If you or anyone you know is having suicidal thoughts, please call the National Suicide Prevention Lifeline​ at​ 1-800-273-TALK (8255)​.

Lewy body dementia symptoms and treatments

According to the National Institute on Aging (NIA), more than one million Americans have Lewy body dementia, with people over 50 being the most affected. Those with Lewy body dementia have abnormal brain deposits of a protein called alpha-synuclein, or Lewy bodies, which affect chemicals that impact brain function. With Lewy body dementia, cognitive and movement issues develop within a year of each other, compared to individuals with Parkinson's disease dementia, who develop movement issues first and then develop cognitive issues more than a year later.

Lewy body dementia is hard to diagnose. The disease typically progresses over five to eight years between diagnosis and death, but the range could be longer based on an individual's health and symptoms. In addition to cognitive problems, movement issues, and depression, symptoms of Lewy body dementia include paranoia, hallucinations, frequent falls, sexual dysfunction, dizziness, and insomnia, among many others.

NIA notes that science has not yet uncovered the cause of Lewy body dementia; however, scientists believe that age is the greatest risk factor. Those who have Parkinson's disease or REM sleep behavior disorder are also at higher risk for the disease. 

According to Schneider Williams, proper diagnosis is crucial because it sets the stage for appropriate care (via CNN). The NIA points out that there is currently no cure for Lewy body dementia, but some symptoms may be managed through certain medications, physical therapy, or counseling.