– Lewy Who?

Dementia with Lewy bodies (DLB) is a type of dementia caused by abnormal proteins called Lewy bodies (named after Friedrich Heinrich Lewy, who discovered them while researching Parkinson’s disease) inside brain cells.

Dementia with Lewy bodies is a Lewy body disease along with Parkinson’s disease and Parkinson’s disease dementia – click here to learn more.

Not many people have heard of dementia with Lewy bodies, although the death of Hollywood actor Robin Williams in 2014 threw the condition into the spotlight as it was discovered, after his death, that he struggled with the condition. Although it is not sufficiently recognised, it is thought that dementia with Lewy bodies may account for 10% to 15% of all cases of dementia.

Friedrich Heinrich Lewy

Friedrich Heinrich Lewy was born in Berlin in Germany on January 28, 1885 (he later became a US citizen, after fleeing Nazi Germany, and changed his name to Frederick Henry Lewey).

Lewy trained to be a neurologist (a branch of medicine dealing with disorders of the nervous system), graduating in 1910.

In 1912, Lewy discovered abnormal protein in the brain of a deceased Parkinson’s patient. These proteins became known as Lewy bodies.

Lewy died in Pennsylvania in the USA October 5, 1950, aged 65.

Friedrich Heinrich Lewy
Dr Friedrich Heinrich Lewy (1885-1950)

Advancements in understanding dementia with Lewy bodies

Dementia with Lewy bodies was first described by  a Japanese psychiatrist and neuropathologist in 1976.

Dementia with Lewy bodies was thought to be rare until the late 1980s, when advances were made in staining techniques for neurological studies.

In 1995 a consortium of international scientists met in Newcastle, England, to agree on clinical and diagnostic criteria for dementia with Lewy bodies. A second report published in 1999 somewhat modified the criteria (source Lewy Body Society) .

In 2005 dementia with Lewy bodies was added to the International Classification of Diseases.

In 2017  scientists at Newcastle University, led an international team of experts, met to produce new international guidelines to help diagnose the disease more accurately and improve management of the complex disorder.

Lewy who?

Profile of dementia with Lewy bodies

Although it is thought to account for 10% to 15% of all cases of dementia, dementia with Lewy bodies is not well known and is often misdiagnosed.

However I believe that it is vitally important that dementia with Lewy bodies is correctly diagnosed, as the earlier symptoms are unique, and an understanding of the disease is vital to ensure that the correct treatment and support is put in place.

When Mum was diagnosed with dementia with Lewy bodies I had never even heard of the condition and I didn’t understand the symptoms until later in the progression of her illness. I believe this affected the level of support we were able to offer Mum, in the earlier stages, and it is why I am now passionate about raising awareness about this hideous disease.

Source for this article Lewy Body Society .

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