Dementia with Lewy Bodies

Host: It's the second most common form of progressive dementia next to Alzheimer's. What is it? You're going to find out next on The Scope.
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If you don't know a lot about dementia with Lewy bodies disease you're not alone. It's something even a lot of physicians don't know a lot about, but luckily we're here with an expert and we're going to find out more about this disease which is a lot more common than you might thing. We're with Dr. Rodolfo Savica. He's the director of the dementia with Lewy bodies and Parkinson's disease at the dementia clinic of University of Utah healthcare. Thanks for taking time. First question: what is this disease? Is it similar to Alzheimer's?

Dr. Rodolfo Savica: This disease is very close to Alzheimer's and is very close to Parkinson's disease. I would say something in-between the two. The interesting thing is that dementia with Lewy bodies share the same pathology with Parkinson's disease but behaves somehow differently. Try to imagine you have a brain that is affected by Parkinson's disease but you have a more diffused involvement of the brain so together with tremors, shakiness, rigidity, stiffness typical of Parkinson's disease but you also have memory loss but not the typical memory loss that you see in people with Alzheimer's. It something completely different, to some extent. Some people have more problem with planning rather than remembering events.

Host: Okay. So planning versus remembering?

Dr. Rodolfo Savica: For example.

Host: Okay.

Dr. Rodolfo Savica: Or people are having problems with another part of memory which is visual/spatial. So people have trouble with depth perception. People have hallucinations that can be pretty bothersome because sometimes they may interfere dramatically with the life of the individual. So it's something in-between the two but some things different than Parkinson's and Alzheimer's disease.

Host: All right. Can it kill you? The first time I've ever even heard about it was Casey Kasem. Now I heard he's dead. Is that what killed him?

Dr. Rodolfo Savica: That's right. Unfortunately, all the neurodegenerative disorders can kill you. One thing that we know is that, if you use the similarity with Parkinson's disease, we know nowadays that people with Parkinson's disease don't die because of Parkinson's disease.

Host: Okay.

Dr. Rodolfo Savica: They die of normal aging. We don't have the same data available for dementia with Lewy bodies, but the two diseases are very close. The vast majority of people with dementia with Lewy bodies don't die because of the disease. However, there are some forms of dementia Lewy bodies that are pretty fast, basically they kill you in 16 months, but those are the rapid progressive Lewy body disease that is something pretty different than what we normally see in the clinic.

Host: How common is this disease?

Dr. Rodolfo Savica: As you were saying in the beginning, it is the second most common form of dementia and it's the second most common form of Parkinsonism. So Parkinson's is first, second is dementia with Lewy bodies. There's Alzheimer's disease first, second is dementia with Lewy bodies. It's more common than we think because, as you were saying before, it's been poorly understood and for many years was under recognized. This disease was identified for the first time in the 80s by a Japanese physician, Dr. Kozaka, a very interesting man that I had a pleasure to meet. For many years it's been forgotten almost and now we know that people with Parkinson's disease, when they have a more diffused degeneration of the brain, for example, they all have these kinds of symptoms. So it's much more common than what we thought.

Host: And it's difficult to diagnose for a lot of physicians.

Dr. Rodolfo Savica: Yes, because, unfortunately, since it's something in-between Alzheimer's and Parkinson's you have to have dual expertise to understand this. You need to know about Alzheimer's and Parkinson's at the same time. Unfortunately, not a lot of people are trained in both of these two major diseases. So it's kind of difficult because some of the symptoms are very similar to Parkinson's and some are very similar to dementia. So it requires some specific skills and expertise to identify.

Host: Yeah, somebody who's got a lot of expertise with this particular disease.

Dr. Rodolfo Savica: Correct.

Host: So they're so close to these other diseases. What happens if it's misdiagnosed? Is that a bad thing?

Dr. Rodolfo Savica: It can potentially be a bad thing because the symptoms are quite different, however similar, and the response to medication is pretty different as well. For example, one of the classic drugs that is highly used in Alzheimer's disease is a class called anti cholinesterase inhibitors, Donepezil, a drug that has been used for more than ten years in the U.S. and the rest of the world. This drug works better in people with dementia Lewy bodies than in people with Alzheimer's disease, so you want to do a good diagnosis and a correct diagnosis because then you have to manage the symptoms appropriately. If you have a wrong diagnosis it's not going to be the case.

Host: You're using the wrong drugs.

Dr. Rodolfo Savica: For example.

Host: Could that cause death if you were given the wrong drugs for the disease?

Dr. Rodolfo Savica: It can cause problems.

Host: Like what type of problems?

Dr. Rodolfo Savica: It can cause problems. For example, if you use another class of drugs that are called neuroleptics people with dementia Lewy bodies, for example, if you use haloperidol, a drug that's used a lot in our geriatric population, you may have a bad reaction. You have something that can lead potentially to death to some extent or definitely can lead to confusion, worsening of memory loss, worsening of Parkinsonism. So it's definitely something that is impacting highly the wellbeing of the individual affected and also the caregivers.

Host: So if you have a physician and he's like, "Oh, boy, I don't know," then that might be a time as a family member for that loved one to seek out a specialist?

Dr. Rodolfo Savica: Oh, yeah. Absolutely. I would say that every time there's a doubt from a physician or from family members it should be better to seek out a specialist. Unfortunately, there aren't very many in the U.S.

Host: Yeah, you're one of the few and this is one of the few clinics in the whole United States that actually is dedicated to this disease, if I understand correctly.

Dr. Rodolfo Savica: That's right. The current number is four.

Host: That's not very many, is it?

Dr. Rodolfo Savica: Not very many at all.

Host: I would imagine that number is going to increase at some point.

Dr. Rodolfo Savica: I hope so, actually. There's actually five in these world.

Host: So how do you determine? Are there any tests for it or is all just cognitive stuff?

Dr. Rodolfo Savica: Well, there are some tests. Usually whenever I evaluate a patient with a possible dementia with Lewy bodies diagnosis I run several tests. This includes neuropsychological assessments and formal four hours evaluation for memory, plus imaging, MRIs, and other imaging like functional imaging, something called FTG CAT scan or DaTscan, dopamine transporter scan, that can be very helpful to identify this disease and better clarify the diagnosis and also the baseline status of the patient, where the patient is and what can happen in the future.

Host: So there are some tools available to you?

Dr. Rodolfo Savica: Absolutely, yes.

Host: None of them give you a definitive answer. You have to take all of these things together.

Dr. Rodolfo Savica: That's right. With clinical criteria and neural imaging we can be very close to the top six level. There are also some people that we're going to misdiagnose but there are not very many.

Host: Is there a cure for it?

Dr. Rodolfo Savica: There isn't anything that can delay the progression or block the progression of the disease. It is something that is present in any disorder that involves neurodegeneration, Lou Gehrig's, Parkinson's, and dementia in general. But there is a cure in a sense that we can do a lot to improve the quality of life, the wellbeing, and also the survival of people with this particular disorder.

Host: So if somebodies looking for more information on this do you have a resource you'd recommend?

Dr. Rodolfo Savica: Sure. First of all, I would like to say that for any questions, please feel for the contact us directly through the phone that you can find online at this particular website. It is UtahMovementDisorder.com.

Host: Are there any final thoughts you have on this topic, anything you'd want the listeners to know or take away?

Dr. Rodolfo Savica: I would like the listener to know that they're not alone. We are a team of people who are invested in this particular disorder. We are also launching, other than the clinic, a support group specifically devoted to people with this particular disorder. We are trying to do our best in terms of clinical care and research to help these people with this disease. In addition, I also say that we are more than happy to see all the possible patients that are interested to be seen with this disorder, but it's always better to talk with their physician first.

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