Unlocking the Mysteries Of Lewy Body Dementia

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Robin Williams

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Six years ago, comedian Robin Williams died of suicide and left the world and his family stunned. He was diagnosed with Parkinson’s disease in 2013.

But what wasn’t known, until an autopsy: His brain had been suffering from the tormenting, degenerative effects of Lewy body dementia (LBD), which can cause depression and visual hallucinations.

LBD affects about 1.4 million Americans and is the second most common form of progressive dementia, after Alzheimer’s disease. Yet relatively few are aware of LBD.

And LBD is often misdiagnosed, because its early stages resemble Parkinson’s and Alzheimer’s, Christopher Janson, MD, a neurologist with Premier Health’s Clinical Neuroscience Institute, told Premier Health Now.

He’s hoping a newly released documentary on Williams’ experience, “Robin’s Wish,” will help raise awareness.

(The day before the documentary’s September 1 release, Hall of Fame pitcher Tom Seaver died of complications from Lewy body dementia and COVID-19.)

Symptoms Of Lewy Body Dementia

“It’s (LBD) not a hard diagnosis for a neurologist,” Dr. Janson says. But diagnosing the condition requires a referral from a primary care physician.

“In terms of scientific advances, one thing we’ve learned over time is there is a lot of overlap in symptoms of the different diseases (Alzheimer’s, Parkinson’s, and LBD).” LBD and Parkinson’s are characterized by the same type of protein deposits in the brain. The deposits are more widespread with LBD. “Why is unclear,” he says.

The protein deposits result in symptoms like movement difficulties, rigidity, and tremors (as with Parkinson’s), behavioral and mood issues, impaired thinking, attention difficulty, depression, visual hallucinations, and paranoid delusions. Symptoms common to Alzheimer’s, like confusion and memory loss, also arise.

Like other neurodegenerative diseases, LBD is progressive and incurable.

The Good News About Lewy Body Dementia

But there is good news, Dr. Janson says. “With a new awareness of the disease, we’re finding more patients with it and making more accurate diagnoses.”

He adds, “Hopefully in the next few years there will be clinical trials for treating LBD. There’s a lot of research in the pipeline (including at the Clinical Neuroscience Institute) to find the root cause.”

Effective medications are already in use – with more on the way – to manage behavioral and motion symptoms of LBD.   

Diagnosing Lewy Body Dementia

Clinical neuropsychologist Fadi Tayim, PhD, is another member of the Clinical Neuroscience Institute team caring for patients with degenerative neurological disease like LBD.

As a follow-up to a clinical exam conducted by a neurologist, Dr. Tayim, Division Chief of the Institute’s Brain Mapping Center, conducts neurocognitive evaluations to identify cognitive deficits in patients, evaluating their memory and ability to conduct daily activities.

He explains, “The difficulty in differentiating between dementias is that the onset of telltale symptoms occurs at different times.” There are very few differences in the first two years of disease onset, he adds.

The psychosis symptoms of LBD – such as hallucinations and paranoia – often develop later.

The examination also includes neuroimaging with a PET scan of the brain.

Until more can be done to treat LBD, Dr. Tayim says, “The best way to stave off the onset of these symptoms is practicing the things that we know are important for good health – exercise, a heart healthy diet with Omega 3s…. That helps prevent the neurocognitive decline.”

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