What is Lewy body dementia? Robin Williams's secret disease

Actor's widow Susan Schneider Williams reveals that he was suffering from Lewy body dementia

Robin Williams
(Image credit: Carl Court/Getty Images)

Robin Williams's widow, Susan Schneider Williams, has spoken out publically for the first time since his death, revealing the details of the American actor's battle with a progressive degenerative disease known as Lewy body dementia (DLB).

At the time of Williams's suicide last year, she said he had been diagnosed with depression, anxiety and Parkinson's disease, but a coroner's report later revealed he was suffering from Lewy body dementia.

"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. Because we didn't know. He didn't know," said Schneider Williams in a People magazine interview. She said the couple had been "living a nightmare", with the "endless parade of symptoms" like "playing Whac-a-Mole". A year after his death, she says she blames Lewy body dementia, not depression, for his death.

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What is Lewy body dementia?

Dementia with Lewy bodies (DLB) is a common form of dementia, which affects more than 100,000 people in the UK, according to the NHS.

What are the symptoms?

DLB has symptoms in common with both Alzheimer's and Parkinson's disease and this sometimes leads to misdiagnosis. Symptoms include problems with memory loss and judgement, thinking speed and language, as well as concentration and visual perception. People can experience hallucinations and mood unpredictability: swinging from alertness to drowsiness in a short span of time. Depression, fainting and slow movements can also be signs of DLB.

What causes Lewy body dementia?

Lewy bodies, named after Doctor Frederic Lewy, are small deposits of protein in nerve cells, which lead to a progressive degeneration of the nerve cells. This is the underlying cause of several progressive diseases affecting the brain and nervous system, such as DLB and Parkinson's disease. The reasons behind the Lewy bodies deposits are not known, but DLB is not thought to be hereditary.

Can it be cured?

Unfortunately, no. It can be managed with pills similar to those used for Alzheimer's disease, which can better control hallucinations and confusion; pills cannot, however, stop the progression of the disease. Physiotherapy, and speech and language therapy, are also used to treat symptoms, as the disease affects motor skills and communication.

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