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Lewy Body Dementia: Why A Common Disorder Is Often Misdiagnosed

Lewy Body Dementia occurs more in people 50 to 60 and older, men more than women.

We examine real-life health issues in our series, Vital Signs. In this episode, dementia.

Actor and comedian Robin Williams was being treated for Parkinson’s Disease when he committed suicide in 2014, but the autopsy showed signs of Lewy Body Dementia.

Dr. Angela Bentle, a geriatrics specialist at Methodist Charlton Medical Center, talked about the often misdiagnosed disorder.

Highlights from Dr. Bentle’s interview:

Can Lewy Body Dementia contribute to a person taking their own life? “Not the disease itself. But the unknown, the fear, the anxiety, not getting answers, not even knowing he (Robin Williams) had Lewy Body Dementia, which is only definitively diagnosed at autopsy, the symptoms can be so mixed, patients can present with something that looks like Parkinson’s and be treated for something like Parkinson’s, yet sometimes the medication for Parkinson’s will exacerbate the symptoms of Lewy Body Dementia –even causing delusions or hallucinations, other types of symptoms. Because of the way it can present differently from other forms of dementia, the treatment can make the disease worse.”

What causes Lewy Body Dementia?“Lewy bodies are alpha synuclein proteins found in the cortical areas of the brain in Lewy Body Dementia. It causes symptoms like hallucinations, poor regulations of body functions, and fluctuation in attention and alertness, leading to daytime napping and sleepiness.”

Can it be treated? “Like other forms where there are medications that can slow or delay the progression of the dementia, there’s no such medication for Lewy Body Dementia that’s been shown to treat or delay the progression of the disease.

It’s not a rare disease: About 1.3 million people, which is less than half the incidents or the number of patients with Alzheimer’s dementia, but still a large number, especially with the confusing presentation and delayed time to diagnosis – plus the presentations can be so different, many times confused with Parkinson’s Disease. These orders are clinically diagnosed. There’s not a blood test or a scan.”

For more information:

Robin Williams and LewyBody Dementia 

Lewy Body Dementia: Information for Patients, Families, and Professionals 

Dementia with LewyBodies 

Sam Baker is KERA's senior editor and local host for Morning Edition. The native of Beaumont, Texas, also edits and produces radio commentaries and Vital Signs, a series that's part of the station's Breakthroughs initiative. He also was the longtime host of KERA 13’s Emmy Award-winning public affairs program On the Record. He also won an Emmy in 2008 for KERA’s Sharing the Power: A Voter’s Voice Special, and has earned honors from the Associated Press and the Public Radio News Directors Inc.