Real People, Real Stories – Lew Body Dementia

The blog below is from my best childhood friend. Her father died of Lew Body Dementia and the world will never be the same. We truly lost one of the great ones to a terrible disease that needs much more awareness and research.


When I think of Robin Williams and Casey Kasem, descriptive words such as entertaining, hilarious, loving, and knowledgeable come to mind. They provided smiles to so many people throughout their lives.  Coincidentally, so did my dad.  Frank was an introverted pastor, but when he was “on” he could appeal to any audience and music knowledge was inspiring. So when it came to light that Robin and Casey had Lewy Body dementia just like my dad, I was relieved to know that we could now put some great faces to this terrible disease.

You likely had never heard of Lewy Body Dementia (LBD) until Robin and Casey passed away from the disease.  I hadn’t heard of it either until 2010 when our fifth different doctor suggested that my dad displayed many of the symptoms of LBD.  In every day terms, LBD is a condition in which proteins and plaques attach to parts of the brain and affect the brain’s neurologic functions.

My dad had been diagnosed with Alzheimer’s disease back in 2007.  Trying out different types of medications was like putting a puzzle together with missing pieces.  He would have declines, then plateaus.  But there were always other factors, ones that puzzled his doctors and nurses. He would have hallucinations.  My dad wouldn’t be able to sleep on a regular schedule. He would shuffle his feet when he walked.  He would fall often and his hands would shake.  Maybe he has Parkinson’s, one doctor suggested.  Late diagnosis for LBD is common. On average, it takes at least three different doctors to diagnose LBD correctly.

Lewy Body climbed higher on our list of possible diagnosis as my dad continued not responding well to the medications that were supposed to help with his hallucinations. That is one of the many hurdles with LBD.  The medication that works for certain dementia diseases, does not work with Lewy Body.  The hallucinations were horrible.  A memorable hallucination that was also somewhat comical was when he truly believed he was a Sargent in the US Army.  This is hilarious since he encouraged others to be a conscientious objector when he came time for men to sign up for the draft.

However, my dad and I always had a pact when dealing with his disease.  We often said, “we’d rather laugh than cry about it.”  We always tried to find ways to find light at the end of dark tunnels.  I feel that Robin did that through his acting and Casey did that through his work with music.  That is my advice when loving someone with LBD, or any type of dementia disease.  It will be a roller coaster of emotions.  Know that you are not the only one.  Join a support group either physically or on social media.   Don’t be afraid to be an advocate for your loved ones. Most importantly, just be there to help with a smile…just like they have provided to you.


For more information visit the Lew Body Dementia Association at

Author: AskTheNP

I'm your personal Nurse Practitioner! Doesn't matter what your question is about health, you are gonna get a clear, easy-to-understand, no bullshit answer from me. We ALL have stuff we are too scared to ask our doctor, and guess what - now you don't have to. Just "Ask The NP" and I promise to keep it casual, keep it real and keep it all about YOU!

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