When Robin Williams’ death was announced back in 2014, his family disclosed the comedian had been suffering for years from symptoms of Lewy body dementia – a disease that many Americans were hearing about for the first time. But this progressive illness, also known as dementia with Lewy bodies, is not a rare disease. In fact, it affects nearly 1.5 million Americans, and is the second most common form of degenerative dementia after Alzheimer’s.
What is Lewy body dementia?
Discovered back in 1900 by scientist Friederich Lewy, LBD is a progressive neurological disorder that causes Lewy bodies – which are protein deposits – to build up in areas of the brain that control movement, cognition, and behavior. Because the symptoms are similar, LBD is often misdiagnosed as Alzheimer’s or Parkinson’s disease. In fact, LBD brain scans often show the same plaques and tangles that exist in Alzheimer’s.
What are its symptoms?
LBD affects memory, cognitive function, vision, sleep, and behavior, as well as autonomic functions such as blood pressure, body temperature, and bowel/bladder function. Over the disease’s progression, its symptoms include:
- Hallucinations, including visual, auditory, olefactory, and tactile;
- Cognitive impairment, such as confusion, memory loss, attention deficit, and visual/spatial issues;
- Movement difficulties, including tremors, stiffness, and slowness/difficulty walking;
- Problems regulating body functions, including blood pressure, body temperature, digestion, and balance;
- Depression, which is often linked to dementia;
- Sleep and attention issues, such as excessive napping, long periods of staring into space, or intense drowsiness.
Are there risk factors associated with LBD?
As of now there are only a few known risk factors associated with Lewy body. Men over the age of 60 are more prone to diagnosis, and people with a family history of LBD and dementia are thought to be at higher risk. Recent research has also looked at possible predictors that are shared by LBD, Parkinson’s, and Alzheimer’s.
Are there treatments available for Lewy body?
Because LBD is such a complex illness involving multiple body systems, its treatment protocols must be nuanced and highly coordinated. It’s therefore critical to be seen by a team with lots of relevant experience. Its progressive nature also demands a good deal of tweaks and course corrections. And to add to the challenge, LBD patients tend to develop extreme sensitivities to certain medications. Head to the Lewy Body Dementia Association to learn more about available treatment options.
What should I do if I suspect LBD?
If you or someone you love is exhibiting symptoms that sound like LBD, take the time to find a neurological team nearby with experience in diagnosing and treating Lewy body. They’ll do a full physical and neurological work-up, including a detailed lifestyle and medical history, as well as brain imaging, blood work, and other lab tests assessing body function. Often, teams with this kind of experience are found at academic research hospitals. The National Institutes of Health offers helpful advice on how to build an effective care team – click here to read more.
For a more comprehensive look at this complex disease, check in with the Lewy Body Dementia Association.