Brain Awareness Week 2021: The lesser known Lewy Body Disorder

Posted on: 19 March 2021

Lewy body disorder (LBD), is a progressive brain condition and represents the second most common form of dementia, after Alzheimer’s disease. LBD comprises with dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD). LBD starts slowly, often with mild physical symptoms that present years before the onset of cognitive problems leading to dementia. LBD can manifest in several different ways, often leading to an incorrect diagnosis. In Ireland, LBD is generally under-diagnosed and under-detected, and the exact clinical prevalence is unknown.  However, based on global statistics, there are an estimated 7,000 to 10,000 people living with LBD in Ireland.

Lewy Body Ireland (LBI), a third sector group led by Professor Iracema Leroi of Trinity College and St James’s Hospital, and supported by the Global Brain Health Institute, is now attempting to raise awareness of LBI and provide a forum for education about LBI for the public and professionals in Ireland, though a website that is currently being developed in consultation with people living with LDB and their families.

‘Lewy bodies’ are abnormal protein deposits that disrupt neuronal function in key parts of the brain that regulate voluntary movement, cognition, memory, alertness, sleep, smell, and behaviour.

Progressive cognitive impairment leading to dementia is a core clinical feature and may lead to a misdiagnosis of Alzheimer disease, or other type of dementia. Hallucinations, which affect about 80% of people with LBD, may appear early in the course of the condition.  Some people experience pleasant visions of children or small animals, but others have frightening hallucinations.

Fluctuations in states of consciousness are common. These have been described as ‘like freezing on a bad zoom connection’.  A person might stare blankly into space or seem drowsy and lethargic, but the same day will be alert and able to carry on a lucid conversation.

Parkinsonism, or changes in movements such as slowing of voluntary movement, shuffled gait, tremor at rest and a mask-like facial expression may appear and may lead to a misdiagnosis of Parkinson’s disease.

Disturbances of dream sleep called ‘REM sleep behaviour disorder’ which is when a person appears to be acting out dreams which may include sleep-talking, violent movements or falling out of bed may occur several years before other symptoms. Physical symptoms like loss of smell, constipation, urinary incontinence, and restless leg are common in LBD.

Why LBD research is needed

Lewy bodies, the abnormal protein deposits in the brain associated with LBD, were first described by Dr Friedrich Lewy in 1912 in Munich, where he worked alongside Professor Alois Alzheimer, after whom Alzheimer disease is named. Dr Lewy fled Nazi Germany in 1933 and continued his research in America. More than a century after Lewy bodies were first discovered, conditions related to Lewy bodies are still under-diagnosed. There is an urgent need to generate and distribute knowledge among professionals and lay stakeholders in Ireland to provide support and improve diagnostic outcomes.

Robin Williams and Lewy Body Disorder

The acclaimed actor Robin Williams died by suicide at the age of 63 in August 2014.  At the time, newspapers reported that he was broke or depressed. The autopsy revealed the presence of Lewy bodies in his brain, although the clinical manifestations of these were not recognised during his life. Recently, Tylor Norwood made a documentary called ‘Robin’s Wish’ which focused on the evidence of the autopsy.  Norwood wanted to make sure that any scientific evidence would be backed up, so he gained support of Dr Bruce Miller co-director of the Global Brain Health Institute and other neurologists to endorse the science of this film.  During the making of this documentary, his widow Susan Schneider Williams found an entry in one of Robin’s journals ‘I just want to help people be less afraid’.

‘Robin’s Wish’ is available to rent online. will be launched in summer 2021

More information on LBD is available now on UK website and US website


This article was written by: Karen Meenan, Atlantic Fellow for Equity in Brain Health in the Global Brain Health Institute (GBHI) based in Trinity College Dublin.  She is one of the members of Lewy Body Ireland (LBI) and is presenting her work on LBI for her GBHI Pilot Project.


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