20 Aug 2025 · 11 min
Lewy body dementia affects 1.4 million Americans but is often misdiagnosed as Alzheimer's or Parkinson's. Robin Williams had it, not depression. The hallmark signs are visual hallucinations, fluctuating thinking, and sleep behavior changes, yet many doctors miss it because there's no definitive test and certain common dementia drugs can be fatal for LBD patients.
Are you caring for a loved one with dementia? You don't have to figure this out all on your own. Welcome to Truth, Lies Alzheimer's, the show that helps you reimagine a new relationship with your loved one, a relationship a little more free of stress and anxiety. Join host Lisa Skinner and her 30+ years of experience as she guides you on a new path to a better relationship with those you care for. Here's Lisa.
Hi everybody, welcome back to another new episode of The Truth, Lies Alzheimer's Show. I'm Lisa Skinner, your host, and this week I am bringing you another fact-filled episode of very true information that I have researched that I feel is very important for all of you to be aware of. The first thing I'm going to discuss here is something that I don't talk about that often on my show, but I think it's important for everybody to be aware of. And this is in regard to Lewy body dementia, which is one of the 200 known brain diseases That cause dementia. So this was published by my friend, Dr. He's not really my friend. I don't even know him, but I think that everything that he puts out there is so credible and is just so worthwhile to share with all of you. So this is another bit of factual information that he has made public. And his name again is Dr. Risa Gomi. He's a medical doctor, a neuropsychiatrist, an engineer, and he treats people with brain disease and has to date diagnosed over 1,000 patients with Alzheimer's disease or one of the other brain diseases. Diseases. So he starts off saying Robin Williams did not die from depression. He died from a disease that most people have never even heard of, and it's called Lewy body dementia. And it's— he says that as far as he can— is concerned, it stole one of our greatest minds ever, and it is hiding in plain sight. On August 11th, 2014, the world lost Robin Williams. The headlines blamed depression and addiction. The autopsy revealed the real killer: Lewy body dementia. His widow, Susan Williams, said it best: Robin was losing his mind, and he was aware of it. That's a quote from Susan Williams. So this is what Dr. Gomi explains about LBD, or Lewy body dementia. It is the second most common form of dementia. It affects 1.4 million Americans, more common than many think or know of, and it's often misdiagnosed as Alzheimer's disease or Parkinson's, although the biology is the same as Parkinson's disease. But Lewy body dementia is different. And according to what he says here, it's devastating. The hallmark symptoms are having visual hallucinations, seeing people, animals, or objects that are not there, fluctuating cognition. You'll have good days and bad days, some hour to hour, deep REM sleep behavior disorder. In other words, people act out dreams, often violently, with Lewy body dementia. And they display, some of them, Parkinsonism, tremors, rigidity, and slow movement. He says, what made Robin Williams' case so tragic? He had all the symptoms but no clear diagnosis. In his final months, he experienced paranoia and anxiety, memory problems, movement difficulties, sleep disturbances, and depression that did not respond to any tried treatment. The cruel irony here, says Dr. Gómez, is that Lewy body dementia often presents with psychiatric symptoms first. Patients get labeled as treatment-resistant depression or late-onset psychosis, and they cycle in and out of psychiatrist offices and on and off a variety of prescribed medications. Meanwhile, the real disease progresses. How Lewy body dementia differs from Alzheimer's disease. Both are brain diseases. So with Lewy body dementia, the hallucinations happen earlier, whereas with Alzheimer's, maybe a little delayed from what we see with Lewy body. The memory problems fluctuate, not steadily progressive. Movement problems appear early. Sleep disorders are prominent. And the diagnostic challenges for Lewy body dementia is that simply that there is No test that can definitively or conclusively determine that it's— that's what it is. It requires clinical expertise and pattern recognition. Many doctors have not seen enough cases to even recognize it. And he's saying, why does this even matter? Because Early diagnosis changes everything. Lewy body dementia patients need different medications. Some dementia drugs make Lewy body dementia worse. Antipsychotics can be dangerous to people living with Lewy body dementia, or even fatal. So Robin Williams' legacy is that he brought Lewy body dementia into the spotlight. I agree with that totally. The awareness as a result increased. Research funding followed. They're developing better diagnostic tools and treatments for Lewy body dementia. For example, There is now a simple skin biopsy to test for the proteins that cause Lewy body dementia. So if you see somebody with depression who's experiencing hallucinations, who's having gait or movement problems, think Lewy body dementia might be the root cause. "It could save their life," says Dr. Gomi. I find that article kind of heartbreaking myself, but it's so important for all of us to be aware of what came out of Robin Williams' tragic death. And hopefully Robin Williams did leave behind impactful legacy that's going to help so many people in the future. So that's what I have for today's episode of The Truth, Lies Alzheimer's Show. I'm Lisa Skinner, your host. It's really important to me, vital, I guess I should say, to use a little bit stronger adjective, to bring you every new research study, every updated piece of information that I find out there because things change dramatically in this realm. And I think it's really important for all of us to be, to be kept in the loop so we can have informed conversations with our physicians and filter out the truth and the lies when it comes to Alzheimer's disease and related dementia. So have a great week, everybody. Thanks again for being here. I appreciate you spending part of your day with me, and I promise I'll be back next week with another episode of the Truth, Lies Alzheimer's Show. Bye for now.
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