One of this century’s best-known comedians, Robin Williams, died on August 11, 2014, at 63. His death was ruled a suicide, but that’s only part of the story — a disease Williams suffered from is a much bigger part of it.
After Williams’ death, in October 2014, an autopsy on his brain revealed he suffered from Lewy body dementia. The disease presents similarly to Alzheimer’s and Parkinson’s so often misdiagnosed as either, with family members only finding out their loved one suffered from it after requesting an autopsy or donating their brain for research.
Williams’ widow Susan Schneider Williams has in the decade since been an advocate for building awareness around Lewy body dementia. In 2022, Schneider Williams told CNN Williams had been diagnosed with Parkinson’s disease after experiencing severe memory, movement, personality, reasoning, sleep and mood changes.
“None of the doctors knew that there was this ghost disease underlying all of this,” Schneider Williams told CNN at the time. “When that was revealed, that was like essentially finding out the name of my husband’s killer.”
What Is Lewy Body Dementia?
Simply put, Lewy body dementia is a type of progressive dementia that leads to a decline in thinking, reasoning and independent function, according to the US’s Alzheimer’s Association.
‘Lewy body dementias’ describes two forms of dementia: dementia with Lewy bodies and Parkinson’s disease dementia, explains Dementia.org.au. Williams suffered from dementia with Lewy bodies.
Both involve damage to the brain caused by Lewy bodies, which are tiny tangles of protein that create damage affecting movement, thinking and behaviour. As the Lewy body dementia develops, those areas become more affected.
Anyone can develop Lewy body dementia, but it’s more common as you get older, typically after the age of 50, according to Medical News Today. More than 100,000 Australians have Lewy body dementia. Unfortunately, doctors and scientists don’t know how Lewy bodies form and there’s no known cure for the disease. That said, there is medication, treatment and support to help you live as best you can.
Sadly, dementia and its symptoms are unpredictable, according to Medical News Today. A person’s symptoms might be stable for a long time, but then suddenly worsen. Or they might steadily worsen.
What Causes Death in Lewy Body Dementia?
Sadly, Lewy body dementia is fatal. This is because the disease is progressive and there’s no known cure to prevent it from progressing. Some medications can help to manage symptoms for a period.
Lewy Body Dementia Resource Center recognises seven stages of Lewy body dementia, from stage one with no cognitive decline and the person possibly not showing any symptoms, to stage seven when severe cognitive decline and individuals lose their ability to communicate and walk.
The progression of the disease varies from person to person, but if you are at stage seven, it’s usually 1.5-2.5 years before death.
What Were Robin Williams’ Symptoms Before He Died?
In September 2016, Schneider Williams published a piece in US journal Neurology called ‘The terrorist inside my husband’s brain’. In the piece, she shared Williams’ desperation to understand his symptoms, which started with insomnia, constipation and an impaired sense of smell, and then spiralled into extreme anxiety, tremors and difficulty reasoning.
“Robin was losing his mind. and he was aware of it,” she wrote. “Can you imagine the pain he felt as he experienced himself disintegrating? […] My husband was trapped in the twisted architecture of his neurons and no matter what I did I could not pull him out.”
Later, Schneider Williams details Williams having a panic attack and forgetting even one line he’d memorised for a movie. He also experienced rapid shifts in and out of clarity, leaving her feeling powerless in helping him see his own brilliance.
After four separate doctors reviewed Williams’ records after his death, they all said his was one of the worst pathologies they had seen.
“Lewy bodies were just about everywhere in Robin’s brain and brainstem with a huge proliferation in the amygdala region,” Schneider Williams told US publication Brain and Life.
Depression can be a common symptom for Lewy body dementia, reported a a study published in the Journal of the American Medical Association. Williams tragically died from suicide, resulting from asphyxia due to hanging.
If you or anyone you know is struggling and needs support, call Kids Helpline on 1800 55 1800 or Lifeline on 13 11 14, both of which provide trained counsellors you can talk with 24/7. You can also speak with someone confidentially at Headspace by calling 1800 650 890 or chat online here.
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