When Robin Williams killed himself in August 2014, depression was considered the culprit. But the beloved film star and comedian was in fact struggling with a demon even more sinister: Lewy body dementia, a little-known and often misdiagnosed disease that manifests as a combination of the worst symptoms of Alzheimer’s disease, Parkinson’s disease, and schizophrenia. Robin Williams’ widow, Susan Williams, shared this diagnosis, which was revealed in an autopsy, Tuesday in an interview with People magazine and ABC.
A few days after Williams’ death, his media representative, Mara Buxbaum, said in a statement: “He has been battling severe depression of late.” Now we know that wasn’t the full story: “Depression was one of let’s call it 50 symptoms, and it was a small one,” Susan Williams said Tuesday, in her first public interview since her husband’s death. Lewy body dementia, she said, “was what was going on inside his brain, the chemical warfare that no one knew about.” Even if the 63-year-old had not ended his own life, the disease would have killed him within a few years, she said.
Lewy body dementia usually strikes at age 50 or later. Like Parkinson’s, it begins with abnormal protein deposits called Lewy bodies, which disrupt brain cells’ normal functioning and later cause them to die. The disease’s plethora of terrifying symptoms start slowly but worsen over time, and include: Alzheimer’s-like memory loss and dementia; Parkinson’s-like tremors and loss of balance; and terrifying, schizophrenia-like hallucinations. The symptoms “present themselves like a pinball machine,” Susan Williams said. “You don’t know exactly what you’re looking at.” Perhaps worst of all, at least at first, the patient can be fully aware of his or her own decline.
After it is diagnosed, Lewy body dementia usually kills a person within five to seven years. There is no cure or effective treatment.
Despite the fact that it is little known, Lewy body dementia is not rare; in fact, it is one of the most common forms of dementia, affecting more than 1 million Americans, according to the National Institute on Aging. But because it bears many similarities to other degenerative diseases like Parkinson’s and Alzheimer’s, it is frequently misdiagnosed. It can take more than a year and visits with multiple specialists to get a correct diagnosis. According to Susan Williams, a coroner’s report revealed signs of Lewy body dementia, as well as early-stage Parkinson’s.
Although Williams didn’t know he was suffering from Lewy body dementia, he seemed to know he was losing his mind. “He was aware of it,” Susan Williams said. In her opinion, she told People and ABC, his suicide was his way of taking control of an impossible situation. “He was just saying no,” she said. “And I don’t blame him one bit.”
