What is Lewy Body Dementia, Which Robbed Robin Williams of His Sanity?

Oscar-winning actor and comedian Robin Williams died in August 2014 of suicide. His death was not due to substance abuse or suicidal tendencies, as some had speculated in the media. Williams’ wife, Susan, told ABC’s “Good Morning America” this month that her husband slowly lost his mind because of a neurological disease, later discovered in an autopsy to be Lewy body dementia.

She said Williams, who was 63 years old and had been diagnosed with Parkinson’s disease, was aware his mind slipping.

“Lewy body dementia killed Robin,” she said.

The disease is named for Dr. Frederick H. Lewy, the neurologist who discovered the abnormal brain particles in the early 1900s.

Dr. Matthew Barrett said UVA is in the early stages of bringing a clinical trial for Lewy body dementia to the Health System.

Dr. Matthew Barrett, an assistant professor in the University of Virginia Health System’s Department of Neurology, explains the disease and what UVA is doing to learn more about Lewy body dementia.

Q. What is Lewy body dementia?

A. Lewy body dementia is a progressive neurological disease with progressive decline in cognitive abilities and distinctive neurological symptoms. It is named for the Lewy bodies that are found in the brains of people who have the disease. Lewy bodies are microscopic protein accumulations inside neurons. It is the presence of Lewy bodies, along with distinctive symptoms, that distinguish it from the more common Alzheimer’s disease.

Q. What are the symptoms?

A. In addition to dementia or progressive decline in cognitive abilities, patients frequently have motor symptoms similar to Parkinson’s disease, visual hallucinations and fluctuations in their level of attention and alertness. Parkinson’s disease symptoms may include tremor, slowed movements, stiffness and changes in gait and balance. Other symptoms that may occur include depression and movements during sleep.

Q. Is Lewy body dementia commonly known?

A. Lewy body dementia is the second-most common cause of dementia after Alzheimer’s disease. Considering that, it is not as widely diagnosed or recognized as would be expected. This is likely a result of its overlap with Alzheimer’s disease and Parkinson’s disease, which can make it more difficult to diagnose.

Q. How is it diagnosed?

A. It is a clinical diagnosis based on the presence of dementia and two of the following three symptoms: Parkinson’s disease symptoms, visual hallucinations and fluctuations in level of attention and alertness. The presence of movements and vocalizations during sleep support the diagnosis. 

Q. How is it treated?

A. Similar to other dementia syndromes, treatment is completely symptomatic. Certain medications can help the dementia, Parkinson’s disease symptoms and hallucinations. Medications are also helpful for treating depression and sleep disorders. ​For the Parkinson’s disease symptoms, there is a role for physical therapy.

As is true for other neurodegenerative diseases, there is evidence that aerobic exercise may slow the progression of the disease. Otherwise, there are currently no treatments that slow or reverse the disease process. 

Q. Is Lewy body dementia fatal?

A. Despite the benefits offered by available treatments, there is deterioration in cognitive and motor function over time. Like Alzheimer’s disease, Lewy body dementia is a progressive disease with average survival after diagnosis of about eight years. 

Q. What kind of work is UVA doing on Lewy body dementia?

A. We are currently involved in a study evaluating a caregiver support model for all types of dementia, including Lewy body dementia. We are also in the early stages of bringing a clinical trial for Lewy body dementia to UVA. It will test a new treatment, and UVA will be one site in a multi-site trial.