Lewy body dementia (LBD) is one of the lesser known forms of dementia and is frequently misdiagnosed. The condition and its debilitating symptoms have only recently been brought to the public’s attention after it was revealed by acclaimed actor Robin Williams’ wife Susan that he committed suicide in 2014 not because of depression, but due to this debilitating condition.
However, despite LBD's relative obscurity, it is the second-most common dementia after Alzheimer's disease in the UK. In the US, over one million people have LBD and most of them are over 50 years old, according to the US’s National Institute of Health’s National Institute on Aging. It is often misdiagnosed as Alzheimer’s or Parkinson’s disease.
What exactly is Lewy body dementia?
A form of dementia, Lewy body dementia is a progressive disease that affects movement and motor skills, and also manifests in severe psychiatric symptoms such as hallucinations, delusions and paranoia. “Those suffering from LBD also experience heart rate and blood pressure fluctuations, constipation and fainting spells,” says Jill Robinson from Alzheimer’s and dementia support group, Alzheimer’s South Africa.
According to Robinson, there are no concrete statistics concerning how many South Africans suffer from this debilitating condition but she estimates the figure to be between 80,000 and 400,000. “This discrepancy in numbers is largely due to the large portion of our population who don’t have access to diagnosis or adequate medical care,” says Robinson.
How did LBD affect Robin Williams’ life and death?
It’s difficult to say exactly what led Williams to take his own life and reasons remain mere speculation. But what is known is that LBD is brutal on both body and mind and is largely unpredictable. “Periods of mental fog, aggressive behaviour, movement issues and vivid hallucinations can last seconds, minutes, hours or days,” says Robinson.
Susan Williams told People magazine that in his final year her husband suffered from unexplained mental symptoms, including anxiety and delusions, as well as physical ones, including muscle rigidity and impaired movement. It wasn’t until after his death that an autopsy revealed that he had LBD.
How does LBD differ from Alzheimer’s and Parkinson's?
Those with LBD are often misdiagnosed with Alzheimer’s or Parkinson’s because the symptoms are so similar.
Alzheimer’s vs LBD
Alzheimer’s disease is a neurological disease that destroys memory and cognitive skills. Robinson says there are crucial differences between the type of dementia caused by either of these conditions. “People with LBD experience unpredictable changes in their cognition, regardless of the time of day, whereas people with Alzheimer's tend to have more trouble when the sun goes down. Those with LBD also tend to have more hallucinations and movement issues, whereas the hallmarks of Alzheimer's are memory loss and trouble performing familiar tasks,” she says.
Parkinson’s vs LBD
Parkinson’s disease is a disorder of the central nervous system that affects movement and progresses with time, manifesting in dementia and other brain problems in the advanced stages of the disease.
“While the two conditions start off differently, their biological underpinnings are closely related and people with Parkinson's disease can be diagnosed with either condition,” says Robinson. Physicians can only really distinguish between the two conditions when the cognitive symptoms start appearing.
The generally accepted rule, according to Robinson, is that people who start to develop dementia within a year of their Parkinson's diagnosis are thought to have LBD, while those whose dementia symptoms start beyond the one-year mark are thought to have Parkinson’s.
What are the treatment options for LBD?
Sadly there is currently no cure for LBD or any treatment to halt its progression. Drugs are usually prescribed mainly to help deal with certain symptoms, such as promoting brain cell function and help with sleep.
Non-pharmaceutical treatments include occupational, speech and physiotherapy to help those with LBD manage their condition.
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