May 07, 2018

Robin Williams had Lewy body dementia – but did not know it when he died

Robin Williams was diagnosed with a form of dementia in his final months, but did not know it, according to a new biography.

Mr Williams’ autopsy report showed he had severe Lewy body dementia; doctors who reviewed the report say it was one of the worst cases they had seen.

However, in the months before he died Mr Williams was diagnosed with Parkinson’s disease.

Lewy body dementia is the second-most common form of dementia after Alzheimer’s disease. The illness causes protein deposits in the brain that affect thinking, memory, emotions, and body movements.

The disease is notoriously hard to diagnose because its symptoms are similar to those of Alzheimer’s disease, Parkinson’s disease, and psychiatric illnesses.

One of the key differences between the diseases can be that Lewy body dementia progresses more quickly than the others.

In his book, Robin, author Dave Itzkoff says that in the months before he died, Mr Williams struggled to remember lines, had trouble controlling his emotions, developed a slight tremor in his hand, was anxious, had trouble sleeping, and lost his sense of smell.

His symptoms first began appearing in 2013; he died in 2014.

While all these symptoms can now be attributed to Lewy body dementia, at the time they were attributed to Parkinson’s disease.

Would a correct diagnosis have helped: “We will never have the answer”

After he died, his third wife, Susan Schneider Williams, wrote an article for the journal Neurology, describing her husband before he died and calling for further research.

“I am writing to share a story with you, specifically for you. My hope is that it will help you understand your patients along with their spouses and caregivers a little more,” she wrote.

Mrs Williams wrote that her husband battled all 40 of the symptoms of Lewy body dementia, but questioned if a diagnosis would have helped them before he died.

“We will never know the answer to this,” she wrote.

Robin Williams won academy awards in 1987 for his portrayal of a Vietnam radio host in Good Morning, Vietnam, and in 1997 for Good Will Hunting. In the 1970s he became a household name for his role as Mork in Mork & Mindy, which reached 60 million viewers. He was also known for his roles in Dead Poets Society, Mrs. Doubtfire, and Jumanji, among many others.

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  1. Robin Williams was a brilliant man – gone too soon. And while he had his demons and struggles, I do have to say it’s wrong to say that he “suffered a form of dementia”.
    It is highly offensive to the thousands and millions of people who are LIVING with dementia to say they are SUFFERING. There is a stigma that is so hard to live with and language like that does not support us.
    I would think a website like this would know that.

    1. Thank you for your message and you are right in saying a brilliant man taking from this earth too soon.

      Equally we couldn’t agree more and appreciate your note that referring to people living with dementia as “suffering” is not the preferred terminology. We appreciate you taking the time to remind us all.

      1. Thanks — I read Robin Williams coroners report and picked LBCRS 6/10 for Dementia with Lewy Body The Lewy Body Composite Risk score was published after he died ?3/10 is positive.. Along with this scale Inability to ‘Fast Feet 20 feet patters in 3 secs 3-4 Cerebral funnies IQ drop >20 -[unpublished data] ALL point to Lewy Bodies – In memory of Robin Williams Another Lewy Body mimic is Alzheimer’s Toxic 3 – This is first hand info – My LBCRS was 8.5/10 August 2015 – dramatically reduced to 4.5/10 with 10 mg Donepizel Hydrochloride and Bredesen protocol now recode. Now with a CPAP to get Oxygen to my brain at rest and reduction of inflammation and rid of EVERYTHING toxic my LBCRS is 1.5/10. Didn’t make sense until Dr Bredesen spoke about 5 types of Alzheimer’s and enlarged on latest research re Toxic 3 – very different to the others – younger onset not connected with memory random profound lesions usually sequencing issues and mimic FTD bv too but scans blood testing and medication approach is very different. Outcomes depend on finding EVERY toxin and removing the poisinous effects on the brain and keeping them away – Think environment moulds tick insect bites mouldy food toxic situations including people polluted air diesel particles mercury Like all dementia prevention the 21st century approach is personalised product specific an assiduous 24/7 protocol forever – This makes it like Type 1 diabetes – both terminal causing much damage if mis or late diagnosed . I say , to stop the epidemic we need to find it early – ‘Cognoscopy ‘ at 45 – find out your genetic, environmental and lifestyle risks – if /when the cogs start slipping, find the relevant brain deficit holes and plug EVERYONE of them assiduously 24/7 and STAY well and employable and included in society. A quiet revolution is happening at dementia grass roots level with hundreds of us world wide through social media and word of mouth getting better and maintaining our gains… TRUTH — check Dementia Alliance International webinars and other proactive dementia sites..


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