October is a month to celebrate and honor many things. In addition to Fall getting underway and celebrating Halloween, it’s also the month we honor survivors of and those we’ve lost to Breast Cancer and Domestic Violence, it’s Down Syndrome Awareness Month, plus many heritages and nationalities are honored. There’s another condition highlighted this month that many people may not be aware of, yet millions of people are all too familiar with. This condition, Lewy Body Dementia (LBD) is a progressive brain disorder that affects movement, mood, behavior, thinking, and how the body works. LBD is the second most common form of dementia after Alzheimer’s and affects up to approximately 20% of all dementia cases which is roughly one million people in the United States, that is roughly the population of Delaware.
While I had previously heard of LBD, I was not at all familiar with it, nor had I met anyone diagnosed with the disorder until I met one of my previous hospice patients. For anonymity’s sake, I will call him Mr. Jones. By the time I met him, Mr. Jones was essentially bed bound and would get out of the house on occasional weekends with the help of his wife and adult son transferring him to his wheelchair. Whenever I spoke with him, it was clear he understood what I was saying and he would oftentimes respond, although sometimes it was hard to understand. One of my favorite moments with Mr. Jones was when I was sitting by his bedside and flipping through channels on the TV for something for him to watch. I mentioned that there was a hockey game on and asked if he wanted to watch that, to which he grunted out obvious disdain. The next channel was showing golf, so I asked about that and he blurted out an incredibly clear “That’s even worse!” I think that was the most unambiguous statement I’d heard from him. It was such a wholesome moment and one I will for sure carry with me long into the future. My time with Mr. Jones increased my interest in dementia as a whole and motivated me to research LBD and while he is not the topic of the whole blog post, he is reason behind it.
So, what exactly is LBD? It is a condition that encompasses multiple diagnoses: any form of dementia where Lewy bodies are present in the patient’s brain. Lewy bodies are abnormal deposits of the alpha-synuclein protein. The two related diagnoses include Dementia with Lewy Bodies and Parkinson’s Disease Dementia. With the former, dementia shows up first and is followed by other LBD symptoms. With Parkinson’s Disease Dementia, the Parkinson’s Disease diagnosis comes first and develops dementia later. While the timelines of both diseases are different, they have the same root cause and can look similar in an advanced stage.
While there is not typically a genetic component to LBD, there are several genes that have variants that may be related to an increased risk. It’s also said that a healthy lifestyle of a balanced diet and regular exercise may lower your chances of developing the disorder. That being said, there is no known cause of LBD. There are various medications to treat individual symptoms, however there is no cure at this time. In fact, the only way to diagnose LBD conclusively is via autopsy. Even specialists that are familiar with LBD only diagnose correctly up to 90% of the time.
While many have not heard of Lewy Body Dementia, some of our favorite celebrities and otherwise notable people have had experience with it. Most notably, Robin Williams was diagnosed after taking his own life. Others include radio personality and the voice of Shaggy, Casey Kasem; CNN founder Ted Turner; Estelle Getty, also known as Sophia Petrillo on Golden Girls; legendary singers Johnny Cash and Perry Como; creator of The Peanuts, Charles Shulz; and a man who needs no introduction: Dick Clark. There are several more who have gone through the battle themselves or watched a loved one fight.
I gathered information for this blog post from the Lewy Body Dementia Association and University of Michigan Medicine and both websites are linked below if you would like to learn more or donate toward research.
https://www.uofmhealth.org/our-care/specialties-services/lewy-body-dementia