What is Lewy Bodies Dementia?

Silver linings. They can be hard to find in the midst of tragedy, loss and illness. But, they can be found – even in the case of Robin Williams’ death. Upon hearing the news of his suicide, millions of people asked a collective, “Why?” Then, the conversation started online, on TV, on the radio – in our homes, offices and just about every meeting place. Robin Williams’ death has brought the diseases of depression and Parkinson’s back into public consciousness. His death has also brought to light a not-so-familiar condition called Dementia with Lewy bodies.

Lewy Bodies Dementia

Lewy Bodies Dementia (LBD) is the second most common type of dementia (first, is Alzheimer’s). It is a horrible disease. Lewy bodies were in Robin William’s brain per his autopsy results. Now, people want to know, “What is Lewy Bodies Dementia?”

Frederick H. Lewy, M.D.

The characteristic brain abnormalities linked to LBD are named after Frederick H. Lewy, M.D.  In the early 1900’s,  Dr. Lewy was working in the lab with Dr. Alois Alzheimer when he discovered them. Lewy bodies are a buildup of a protein called alpha-synuclein. This protein is found widely in the brain. Its normal function isn’t yet known. The reason why the protein accumulations form in some brain cells and not others is still unclear and a matter of ongoing research. Lewy bodies look like round blotches of color surrounded by a halo of a lighter color when viewed under a microscope.

Marc Friedman, Cerna’s Senior Vice President of Client Care explains, “Dementia with Lewy bodies is one of the most widely under-diagnosed conditions.”  Currently, Cerna has several clients diagnosed with LBD. Cerna Home Care is a proponent of second opinions because we need to determine the best care for a loved one. Another opinion is no disrespect to the primary doctor. It simply affords a new set of eyes – and it is the right thing to do.


Most individuals with LBD can also be afflicted with Parkinson’s disease. LBD is misdiagnosed as Parkinson’s in many cases. Early and accurate diagnosis of LBD is essential because LBD patients may react to certain medications differently than Alzheimer’s or Parkinson’s patients. LBD symptoms can be worsened by a variety of drugs including anticholinergics and some anti-parkinsonian medications.

Debilitating Symptoms

Dementia with Lewy bodies affects emotions, movement, and thinking. It often causes delusions and hallucinations. Those afflicted with LBD imagine small things, like “seeing” tiny people or animals. They see illusory objects and reach for them, frequently asking their caregiver, “Don’t you see that?” People with LBD can be aggressive with others; their symptoms put them on the defensive very easily.

LBD affects the production of dopamine, which affects our movements. Dopamine also alters reward-motivated behavior and pleasure. The brain’s incapacity to produce dopamine severely hinders movement and can affect the cerebral cortex. Therefore, those suffering from LBD lose all fluidity of movement becoming rigid. The rigidity is painful and progressive – as rigidity increases, so does the pain.

Dementia with Lewy bodies progresses up to seven times more rapidly than Alzheimer’s and Parkinson’s. The person afflicted passes away more quickly because the mind cannot cue the body to take care of itself. For example, he or she may not be able to swallow because their brain no longer knows how to tell their body to swallow.

Silver Linings

In death, Robin Williams has raised public awareness of LBD. Lewy Bodies Dementia is better understood because of newfound curiosity. More people will insist on second opinions to diagnose LBD accurately and earlier. More people afflicted will live an improved quality of life with accurate diagnosis. More dollars will be donated to LBD research– silver linings at a tremendous cost, but silver linings nonetheless.

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