Dementia with Lewy Bodies Has Its Own Genetic Signature

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lewy body dementia

About 15 years ago, I became acquainted with Lewy body disease the hard way when my father was diagnosed. In the meantime, I learned that nobody really knew that much about the disease or how to effectively treat it. Unlike other diseases that had been pulled apart hundreds of ways to find the best ways to treat them, this second leading cause of dementia has remained a scientific ghost. That is, perhaps until now, as researchers are zeroing in on its genetics.

My Introduction to Lewy Body Dementia

My father began to exhibit the first signs of what everyone thought was Parkinson’s disease about 20 years ago. The problem was that while the slow and limited movements of Parkinson’s can be easily treated with medications, my dad wasn’t responding in the same way. His local physicians didn’t know why, so I had a local expert neuropsychologist see him, and to her it was clear—he had Lewy body dementia.

Like to many people, this diagnosis didn’t resonate. While I had learned a little about this issue in medical school, the more I researched the disease the more questions I unearthed. Turned out nobody really knew much about it, why it happened, or how to treat it. All they knew was that these patients had the worst parts of Parkinson’s disease and Alzheimer’s disease with some hallucinations thrown in for good measure. They also knew that on postmortem exams they had these small inclusions in the brain that are called Lewy bodies.

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What in the World Are Lewy Bodies?

Lewy bodies are formed when proteins (called alpha-synuclein) that live in the nerve cells in the brain begin to clump together, creating deposits. Deposits of these Lewy bodies deplete biochemicals in the brain and disrupt the function of the nerve cells, and eventually, the cells will die. This can lead to Lewy body dementia, causing symptoms such as memory loss, problems sleeping, cognitive decline, alterations in mood and behavior, problems with movement, and even hallucinations.

What Is Dementia with Lewy Bodies?

Lewy body dementia (DLB) is often associated with Alzheimer’s or Parkinson’s. Indeed, it can occur in conjunction with and worsen these diseases. In the case of Parkinson’s, for example, Lewy body deposits are found in the brain stem. However, as today’s feature study will show, DLB is also, in fact, its own neurodegenerative condition with its own genetic makeup.

In DLB, Lewy bodies can be found in many areas of the brain, such as the cerebral cortex, hippocampus, and midbrain. Dementia with Lewy bodies accounts for 10–15% of dementia cases, making it second on the list of the most common progressive dementias, with Alzheimer’s dementia being, by far, the most common. Lewy body dementia, like Alzheimer’s, is an incurable progressive dementia, which means it will continue to worsen over time and until death. My dad died about five or so years after the diagnosis, and his last years were not great.

Before we dig into today’s study, let’s review what else we’ve learned about dementia.

What We’ve Learned in Recent Years About Dementia

While there are many theories out there as to what causes dementia with Lewy bodies (genetics, environmental toxins, lifestyle, etc.), we aren’t really certain what all plays into the etiologies of this debilitating disease. The new study suggests there is certainly a strong genetic link (with up to 36% inherited). While we already knew this link existed in other progressive dementias, according to the researchers, this cause hadn’t yet been studied in DLB. A few other things we’ve learned about dementia in recent years follow:

What can you do now to possibly lower your risk? Seek nonsurgical options whenever possible. Address your pain early, before it becomes chronic, and without nonsteroidal inflammatory drugs (NSAIDs), which have also been shown to increase dementia risk. Stay away from artificial sweeteners. And, if possible, try to live in areas away from highways and high traffic, especially if you are genetically already at a high risk for dementia.

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Dementia with Lewy Bodies and Its Unique Genetic Signature

The new study consisted of over 1,700 subjects from ten different countries with dementia with Lewy bodies as well as nearly 4,500 control subjects. Gene samples were collected from the subjects (in over 1,300 of the dementia subjects, these samples were collected after death). Certain genetic markers (APOE and GBA) found in Alzheimer’s and Parkinson’s were associated in the same way in dementia with Lewy bodies. However, a different part of another marker (SNCA) was associated only with dementia with Lewy bodies. Researchers concluded that dementia with Lewy bodies does indeed have its own unique genetic signature, making it its own distinct neurodegenerative disorder, not just part of Alzheimer’s or Parkinson’s disease.

The upshot? The first step in finding a cure or an effective treatment for DLB is to understand why it happens. Now that the genes responsible have been found, perhaps scientists can figure this one out. While it’s too late for my dad, this is an awful disease, and millions of patients and their families deserve a way to have some control over the long, progressive slide into disability that this disease represents.


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10 thoughts on “Dementia with Lewy Bodies Has Its Own Genetic Signature

  1. Ruth

    Thank you for sharing this information.
    I am very sorry to hear about your father having this condition and wish you and your family best wishes.

    1. Regenexx Team

      Thank you Ruth – very kind of you! The hope is that identifying LBD’s unique genetic profile will inspire new research to help patients and families going forward.

  2. Sharon Ann Alger

    Are there any clinics treating Parkinson’s or forms of dementia with stem cells? If not, are there any clinical trails worth investigating?
    My husband and I are awaiting the results of a brain MRI. Unfortunately, he exhibits many of the symptoms including falling and visual problems.
    My husband and I are former patients of Dr Schultz. We support all you are doing in this field.


    1. Regenexx Team

      Very sorry to hear that, Sharon… Clinical trials are listed on the website. It looks like most are focused on research about the disease rather than treatment, with a few testing various forms of music and other therapy, but there are 30 listed so would be worth going through them. There are, unfortunately in the stem cell area, clinics that claim to treat this and every other thing that ails you. If we hear of anything we’d try ourselves, we’ll get in touch.

  3. Mo

    Thank you, Chris. This is informative. I only heard of LBD after news was released that Robin Williams had been diagnosed with it, and that this was why he decided to end his own life in 2014. My sister was diagnosed with LBD in 2017. It is so scary to watch this play out in a sibling – and then I also fear that I’ll eventually be diagnosed. There is so little out there. I read medical studies, but they are so specific to conditions of the subject(s). Is it possible to get genetic testing while living – or only upon autopsy? Not sure I really want to know.

    1. Regenexx Team

      Not sure there is a way to know, yet. It is very difficult to watch a loved one go through this. The new study in the blog differentiated LBD from Parkinson’s and Alzheimer’s by being linked to the SNCA gene rather than the GBA gene usually associated with Parkinson’s and the APOE gene usually associated with Alzheimer’s. While several of the commercially available DNA health tests like 23andme test for those markers, they do not yet test for SNCA. Though the study found a strong genetic link at 36%, that leaves 64% in which there was not one. As covered in this blog and others, things you can do proactively are to keep your gut biome healthy, avoid diet sodas, don’t live near a highway, very importantly avoid NSAIDs, but most importantly, AVOID SURGERY!

  4. Stacey Piesco

    My mother died from LBD but was not diagnosed until after her death, when we sent her brain to the Mayo Clinic for study. We were told she had MSA or PSP, we sent her to 10 different neurologist and not one of them diagnosed her correctly. She was given the wrong medications and treatment which made it worse in the early stages. Her muscles all stiffened and atrophied. We had no idea what was happening to her or why. This was a truly frustrating and heartbreaking experience for our family and for my mother, an awful and painful way to live her last years on Earth. She was only 68 when she died. It haunts me every day and she was robbed of so much because of this terrible disease.

    1. Regenexx Team

      Hi Stacey,
      So very sorry to hear that. It is a terrible disease. May we ask when this happened?

  5. Mary

    My husband has Alzheimer’s and LBD. Is anyone doing research on LBD and fecal implants? Even more important…is anyone using fecal implants as a treatment for LBD or Parkinson’s?

    1. Regenexx Team

      Hi Mary,
      There is actually a good amount of research on treating Parkinson’s with Fecal transplants. Here’s one, but a Google search reveals many:

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