Lewy Body Dementia: Everything You Need to Know About the Progressive Brain Disease that Robin Williams Didn’t Know He Had

When Robin Williams died of suicide in 2014, the entertainment industry was left searching for answers. We knew the beloved actor-comedian had struggled with depression, paranoia, memory loss, and insomnia in his final years, but we later learned there was a bigger culprit here – Lewy body dementia.

When most of us hear the term ‘dementia,’ we think of Alzheimer’s disease – the most common type of dementia, which accounts for 60-70% of all dementia cases. While Alzheimer’s disease receives a lot of attention, Lewy body dementia is a lesser-known type of dementia that deserves to be talked about. 

In the United States today, there are more than 1.4 million Americans living with Lewy body dementia – a disease that’s more prevalent in those above the age of 50, but one that can happen in younger people, as well. Much like Alzheimer’s disease, Lewy body dementia impacts the chemical makeup of the brain.

Lewy Body Dementia: Everything You Need to Know About the Progressive Brain Disease that Robin Williams Didn't Know He Had | In the United States today, there are more than 1.4 million Americans living with Lewy body dementia – the disease Robin Williams didn't know he had.

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More specifically, Lewy body dementia is characterized by a buildup of alpha-synuclein – an abundant protein found in the brain. As the protein builds up in the brain, it creates small deposits called Lewy bodies – which ultimately results in chemical changes in the brain. It’s unknown why this buildup occurs.

Lewy body dementia can impact an individual in a variety of ways, but mostly impacts their memory, visual perception, language skills, problem-solving skills, ability to focus and/or concentrate, and their ability to function, in general. Most people with Lewy body dementia struggle to perform everyday tasks.

Some of the most common symptoms of Lewy body dementia include a loss of cognitive ability, changes in alertness, concentration, focus, and wakefulness, visual hallucinations, slowed movements, difficulty walking, muscle stiffness, changes to sleep patterns or quality of sleep, depression, anxiety, and apathy. 

There are two primary types of LBD – dementia with Lewy bodies and Parkinson’s disease dementia. In dementia with Lewy bodies, the cognitive symptoms develop before the movement symptoms. In Parkinson’s disease dementia, the movement symptoms develop before the cognitive symptoms. 

How is Lewy Body Dementia Diagnosed and Treated?

In the case of Robin Williams, Lewy body dementia wasn’t diagnosed until his autopsy revealed he was suffering from a severe form of the disease – by then, it was far too late. His death came as a shock to us all, but it helped bring attention to a disease that many are struggling with, but many aren’t aware of. 

The truth is Lewy body dementia is often mistaken for Alzheimer’s disease or Parkinson’s disease. While it shares many similarities with both diseases, the causes are different and, therefore, the treatment might look a little different, as well. Either way, an early diagnosis is essential to the treatment of the disease. 

Doctors diagnose LBD with physical exams, neurological exams, and neuropsychological exams – while also ruling out other diseases. If the individual experiences cognitive symptoms first, they have dementia with Lewy bodies. If they experience movement symptoms first, they have Parkinson’s disease dementia.

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While there is no cure for Lewy body dementia, treatment for the disease often includes medication, physical therapy, occupational therapy, speech therapy, mental health counseling, music therapy, and/or art therapy. The primary goal behind the treatment is to help the patient cope with their symptoms.

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