Williams was diagnosed with Lewy body dementia after his death by suicide in 2014.

By Korin Miller
September 01, 2020
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More than six years after his death in 2014, a new documentary is revealing details about Robin Williams's final days, and aims to raise awareness for the progressive form of dementia he was diagnosed with following his untimely death.

The documentary, called Robin's Wishdetails the comedian's fight with Lewy body dementia. Williams was only diagnosed with the brain disease after he died by suicide at the age of 63, but according to his widow, Susan Schneider Williams, he had been experiencing symptoms of the condition. "I was called in to go over the coroner's report," she says in the trailer for the film. "It was the beginning of understanding what had really gone on."

Schneider Williams went on to say that her husband had “unknowingly been battling a deadly disease,” noting that “nearly every region of his brain was under attack.” She added, “He experienced himself disintegrating.” Several people in the trailer talked about how Williams was able to push through intense symptoms, with his wife noting that, “he was a freaking warrior.”

Though dementia in general is a well-known term, this specific type—Lewy body dementia—is less understood. Here's what you need to know about the progressive brain disease.

What is Lewy body dementia?

Lewy body dementia (LBD) is one of the most common causes of dementia, according to the National Institute on Aging (NIA). It’s specifically associated with abnormal deposits of a protein called alpha-synuclein in the brain. Those deposits, which are called Lewy bodies, impact chemicals in the brain, the NIA says. According to the US National Library of Medicine's MedlinePlus resource, that can impact the following in a patient:

  • Memory
  • Language skills
  • Visual perception (your ability to make sense of what you see)
  • Problem solving
  • Trouble with everyday tasks
  • The ability to focus and pay attention

There are two types of Lewy body dementia, the MedlinePlus says: dementia with Lewy bodies, which causes problems with thinking ability that seem similar to Alzheimer’s disease, and Parkinson's disease dementia, which starts as a movement disorder and later causes dementia. (It’s unclear which form Williams had; His autopsy stated that he had “‘diffuse Lewy body dementia” in his brain, per The New York Times—though that's just a term used interchangeably with Lewy body dementia or other iterations of the name.)

The brain disease impacts more than 1 million people in the US, according to the NIA. It typically begins at age 50 or older, but it can happen in younger people, too, the NIA says.

What are the symptoms of Lewy body dementia?

Lewy body dementia is a progressive disease, meaning it gets worse over time. People typically live with the disease for five to eight years after a diagnosis, the NIA says, but some may survive up to 20 years with the condition.

The most common symptoms include changes in thinking, movement, sleep, and behavior, per MedlinePlus. Symptoms specifically can include:

  • A loss of mental function to the point where it impacts the patient’s daily life and activities
  • Changes in concentration, attention, alertness, and wakefulness
  • Visual hallucinations
  • Problems with movement and posture, including slowed movements, difficulty walking, and muscle stiffness
  • REM sleep behavior disorder, a condition where a person may act out vivid dreaming, talking in their sleep, have violent movements while they sleep, or fall out of bed
  • Changes in behavior and mood, including depression, anxiety, and apathy

As the disease advances, people with Lewy body dementia often depend entirely on other people to care for them, the NIA says.

How is Lewy body dementia diagnosed—and how is it treated?

There isn’t any one test to diagnose LBD, and its symptoms can often be confused with those of Alzheimer’s disease and Parkinson’s disease, MedlinePlus says. Typically, the disease may be diagnosed after a series of physical and neurological exams, tests to rule out conditions that can cause similar symptoms, and neuropsychological tests to evaluate memory and other cognitive functions.

Doctors tend to make a specific diagnosed based on when symptoms start, per MedlinePlus: If cognitive issues start within a year of movement problems, they will likely be diagnosed with dementia with Lewy bodies; If they start more than a year after movement problems, the diagnosis is often Parkinson's disease dementia.

The NIA says there are certain treatments that may help those diagnosed with Lewy body dementia. Those can include:

  • Medications to help with cognitive, movement, and psychiatric symptoms
  • Physical therapy to help with movement problems
  • Occupational therapy to find easier ways to do daily activities
  • Speech therapy to help with swallowing issues and trouble speaking
  • Mental health counseling to help with difficult emotions and behaviors 

Unfortunately, however, there is no cure for Lewy body dementia. Robin’s Wish is currently available on Prime Video.

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