Lewy body dementia reached the public eye in 2014 after reports that Robin Williams died with diffuse Lewy body disease.
But, despite the fact that Lewy body dementia is the second most common dementia, it remains frequently unrecognized.
In one study, almost 70 percent of people diagnosed with Lewy body dementia saw three consultants before receiving the diagnosis. For a third of people with the disease, getting the correct diagnosis took more than two years.
October is Lewy Body Dementia Awareness Month. As a physician, specializing in Lewy body dementia, I often hear patients and families describe delays in getting a diagnosis. It does not have to be this way. Awareness is critical, particularly as new opportunities emerge for diagnosis and treatment.
What is Lewy body dementia?
The word “dementia” describes a condition affecting a person’s memory and thinking that is a decline from how he or she used to function and that is severe enough to affect day-to-day life. Alzheimer’s disease dementia and Lewy body disease are the two most common types.
Lewy body dementia gets its name from the abnormal protein clumps that are seen on autopsies of the brains of people with Lewy body dementia. The protein alpha-synuclein – a protein found in the brain, not one you eat – clumps into spheres called Lewy bodies which can be seen using a microscope. These are named after F. H. Lewy, the person who first described them.