Dementia is a word that often sparks fear and confusion, with many families immediately thinking of Alzheimer’s as the only form. But dementia is actually an umbrella term for several distinct diseases, each with its own causes, symptoms, treatments, and risks. In this episode of "What I'd Tell My Family," Dr. Todd Levine guides us through the essential differences between the four major types of dementia: Alzheimer's disease, Lewy body dementia, frontotemporal dementia, and vascular dementia.
We'll explore how new diagnostic tools and FDA-approved treatments are making precision medicine possible, learn about the frequently missed or misdiagnosed forms like Lewy body dementia, and discover why getting the right diagnosis has never been more important. Whether you’re noticing early memory slips in a loved one or want to prepare for the future, Dr. Levine offers practical advice, discusses life-changing medication risks, and explains the importance of new biomarkers that could change how we fight these diseases. If you think all dementias are the same, this episode will give you the critical distinctions every family needs to know.
Timestamps:
00:00 Precision medicine in dementia care
04:40 Understanding Alzheimer's protein buildup
07:15 Understanding brain aging stages
11:09 Understanding Dementia with Lewy Bodies
16:38 Aggression in frontotemporal dementia
19:39 Addressing Cognitive Decline Risks
22:26 Understanding co-pathology in dementia
23:54 Precision medicine for dementia treatment
28:25 Diagnosing neurological conditions over time
32:20 Early diagnosis and intervention
33:35 Advancements in Alzheimer's diagnostics
Understanding the Four Major Types of Dementia: Key Insights from Dr. Todd Levine
Dementia is a term that often brings anxiety to families, with Alzheimer’s being the name most commonly associated. However, as highlighted in a recent episode of the "What I Tell My Family" podcast, featuring neurologist Dr. Todd Levine, there are at least four major types of dementia, each with distinct causes, symptoms, and treatment considerations. This blog post summarizes essential insights from the episode, helping you to better understand dementia and the importance of accurate diagnosis.
Why the Type of Dementia Matters
When families hear "dementia," the assumption is often that it is Alzheimer’s. However, as Dr. Todd Levine emphasized, each type of dementia is marked by different proteins building up in the brain and progressing in unique ways. While treatments for Alzheimer’s now include FDA-approved medications that reduce amyloid protein, these drugs would not be effective for other dementias caused by different proteins. Therefore, knowing the specific type of dementia is more important than ever before, as misdiagnosis is common and may even lead to harmful treatment choices.
Alzheimer’s Disease: The Most Common Form
Alzheimer’s disease is caused by the accumulation of amyloid and tau proteins in the brain. According to Dr. Todd Levine, these changes primarily affect memory in the early stages. Symptoms often include repeated questions, misplaced belongings, and trouble managing daily affairs like paying bills. The disease tends to progress slowly, over five to fifteen years, with late-stage symptoms overlapping with other forms of dementia.
Lewy Body Dementia: Frequently Misdiagnosed
Many people are unfamiliar with Lewy Body dementia, although it is the second most common form. Dr. Todd Levine explained that Lewy Body dementia involves the buildup of alpha synuclein, a protein also connected to Parkinson’s disease. Early symptoms include visual or auditory hallucinations and episodic fluctuations in alertness. Notably, there is a critical medication warning: drugs that block dopamine, often given to control hallucinations, can dangerously worsen symptoms for those with Lewy Body dementia, making accurate diagnosis vital.
Frontotemporal Dementia: Younger Patients and Behavioral Changes
Frontotemporal dementia differs from the other types both in the protein involved (TDP 43) and in the population it affects. According to Dr. Todd Levine, this form frequently impacts individuals in their 50s and 60s and targets the front and side regions of the brain. Unlike Alzheimer’s, initial symptoms are often behavioral, such as impulsivity, mood swings, and loss of inhibition. This disorder is sometimes mistaken for psychiatric illnesses before the underlying neurological cause is identified.
Vascular Dementia: The Influences of Lifestyle and Stroke
Vascular dementia is unique in that it is tied to strokes and blood vessel health rather than protein buildup. Dr. Todd Levine noted that this form relates to risk factors such as hypertension, diabetes, and high cholesterol. Unlike other dementias, vascular dementia often presents with abrupt declines rather than a slow progression. Because it is so closely tied to lifestyle factors and vascular health, modifying these risks can slow the progression of the disease.
Mixed Dementia: Co-Pathology and the Importance of Precision Medicine
It is increasingly recognized that many older adults live with more than one type of dementia simultaneously, a phenomenon Dr. Todd Levine called “co-pathology”. For example, a person might have both Alzheimer’s and vascular dementia. This makes precise diagnosis critical, as treatment strategies may need to address multiple underlying mechanisms for optimal care.
The Evolving Diagnostic Process
Diagnosis of dementia continues to advance, with new imaging and biomarker blood tests now available for amyloid, tau, and alpha synuclein. Dr. Todd Levine discussed how combining clinical evaluation, MRI or PET imaging, and biomarker analysis leads to more accurate diagnoses than ever before. Recognizing cognitive changes early and seeking specialized testing is now crucial, as interventions and care planning depend on knowing exactly which dementia is present.
Conclusion: Knowledge Empowers Better Care
The main takeaway from this episode is that not all dementias are the same, and getting the most accurate diagnosis possible is key to improving treatment, safety, and quality of life. If you or your loved one faces a dementia diagnosis, ask about the specific type, request up-to-date biomarker testing, and make lifestyle changes to influence outcomes. Stay tuned to future episodes of "What I Tell My Family" for deeper dives into each dementia type and the latest advances in care strategies.
Dr. Todd Levine on LinkedIn - https://www.linkedin.com/in/todd-levinemd/
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Podcast - https://what-id-tell-my-family.beam.ly/
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Podcast Partner - https://www.tophealth.care/
“Disclaimer: Informational only. Not medical advice. Consult your doctor for guidance.”
[00:00:00] As you said, the most common form of dementia is Alzheimer's, and that's what most people sort of equate with the idea of dementia. But in order for us to get to the place where we can treat patients as individuals, we need to be able to know what is actually causing their loss of cognitive function. There are proteins that are building up inside the brain that are damaging the brain. But with each type of dementia, there's a different type of protein.
[00:00:27] This is very important because we now have FDA-approved medications to reduce the level of amyloid, which is one of those proteins that builds up in the brain. We wouldn't want to use that if your family member or loved one had a dementia that was caused by a different protein. And so therefore, knowing what kind of dementia you or a family member has has never been more important than it is today.
[00:00:53] When a family hears the word dementia, the assumption is almost always Alzheimer's.
[00:01:20] But there are at least four major types of dementia, and they look different, progress differently, and respond to treatment very differently. And misdiagnoses aren't rare. They're actually pretty common. And in some cases, getting the wrong diagnosis doesn't mean the wrong treatment. It means a dangerous one. So today, Dr. Levine draws the map that most families are never handed. Welcome back to What I Tell My Family. This is super interesting to me, Dr. Levine.
[00:01:45] I'm interested and excited to get into this with you because I think I'm probably some of the target demographic that here is dementia and Alzheimer's that kind of lumps it all together. So we're about to learn that it's very, very different. But before we get into it, how are you today? How are you doing? I'm good. Thank you very much. Thanks for having me back. Absolutely. Yeah. Episode four, I feel like I've been learning so much. I know our listeners have as well.
[00:02:08] So we kind of hop right into it because reading through this track today, I was really, really surprised at how different and it almost sounds like maybe there's almost like an umbrella of dementia. And then there's so many different kinds of dementia that I know most people don't know about. So let's kind of start with that. So why does the specific type of dementia actually matter if there's no cure really for any of them?
[00:02:33] But why is the distinction change so drastically anything for a family that has a diagnosis? Yeah, I mean, there's a number of reasons. So I think the first is that we really want to move towards this concept of precision medicine. And we've talked about that a little bit in some of the earlier episodes where, as you said, dementia is really a term that we use for someone who's having progressive loss of their cognitive functions.
[00:03:01] And that can be due to many different diseases. But in order for us to get to the place where we can treat patients as individuals, we need to be able to know what is actually causing their loss of cognitive function. So, as you said, the most common form of dementia is Alzheimer's. And that's what most people sort of equate with the idea of dementia.
[00:03:24] And as we've mentioned in earlier episodes, what turns out to be true for many forms of these dementias is that there are proteins that are building up inside the brain that are damaging the brain. But with each type of dementia, there's a different type of protein.
[00:03:43] So for Alzheimer's disease, this is very important because we now have FDA approved medications to reduce the level of amyloid, which is one of those proteins that builds up in the brain. We wouldn't want to use that if your family member or loved one had a dementia that was caused by a different protein because lowering amyloid wouldn't be effective in that form of dementia.
[00:04:09] So it is much more important, even though, as you say, we don't have cures yet, but we do have drugs that can slow the progression of the disease, at least for Alzheimer's disease. And so, therefore, knowing what kind of dementia you or a family member has never been more important than it is today. That's interesting. So let's kind of start there. So with Alzheimer's, what is the signature of Alzheimer's on the brain and how does it typically present?
[00:04:36] And beyond that, what does the usual progression really look like for Alzheimer's? So Alzheimer's, we believe, is caused by the buildup of two proteins, one called amyloid, which builds up in the space between the individual nerves, and then one called tau, which builds up inside the nerves themselves. So that is sort of the signature. If you look at autopsy and you can actually analyze a brain, you see that these proteins have built up.
[00:05:05] Now, what's interesting about the different types of dementias is that they tend to start in different parts of the brain. And because they start in different parts of the brain, the early symptoms are fairly different. Late in the course of a disease, if you've ever seen a family member or a friend with advanced dementia, they can all pretty much look the same. They're not very responsive. They can't remember. They may be aggressive. Lots of the symptoms overlap.
[00:05:34] But in Alzheimer's disease, it affects a part of the brain early on that is very important for forming and keeping memories. And so one of the earliest symptoms in Alzheimer's disease is people having trouble with short-term memory. So they ask the question over and over again. They park the car at the grocery store and then forget where they put the car and get lost. They start to have more trouble remembering to pay bills.
[00:06:03] Those types of memory issues are really sort of one of the first symptoms. As Alzheimer's progresses, that gets worse and worse. So the memory becomes more impaired. And then eventually they start to have trouble with other neurologic functions as well, as the buildup of those proteins spreads throughout the brain.
[00:06:24] Alzheimer's disease progresses fairly slowly in the natural history so that it's a disease that typically progresses over 5, 10, 15 years before people really reach the advanced stages of Alzheimer's. Interesting. So I have a question. I might go a little bit rogue here, but you mentioned how kind of like daily tasks become something that are becoming more forgetful. For example, where did I park my car? Where did I put my keys?
[00:06:54] And I feel like people say that all the time, like, oh, I'm getting Alzheimer's. I'm getting dementia. But I can't remember where I put my keys and it's something that's almost joked about in a way. But when is that something that should be looked into and taken seriously versus like just a smaller thing where I forgot these? You know what I mean? So so sadly, as we get older, all of our brains are getting smaller and we don't really want our brains to get smaller.
[00:07:23] And so we think about sort of three levels of these changes that occur. One we call normal aging. And so if you think about your 80 year old grandfather, they probably have a little more difficulty pulling up a word now and then. Or they watch TV and they can't remember the name of the actor. And that's normal because there are not many 80 or 90 year olds that can remember those things the way they did when they were 30 or 40.
[00:07:51] So we call that normal aging, but it doesn't have any real impact on their day to day life. The second level we call mild cognitive impairment. And at that level, people are really starting to notice that something is wrong with their loved one or something is a little different than their friend. So it's more than the occasional word, the occasional name. But it's still not having a big impact. So they can pay their bills. They can shop.
[00:08:19] They don't get lost when they drive their car. We do know that people with mild cognitive impairment are more likely to go on to develop dementia. And so we worry that it can be a precursor where if you think back, oh, yeah, 10 years ago, they were starting to be seen a little bit differently by their friends and their family. And then we talk about dementia and dementia really means now it's impacting their day to day life.
[00:08:47] So it's not just like me where I lose my wallet and my keys all the time. It's they're getting lost when they drive to the grocery store. They're leaving the oven on and going to bed. They're doing things now that have a bigger impact on their daily life. And then that definitely progresses over time to have more and more impact on their ability to function. So it's really three levels. One is normal aging. The second we call mild cognitive impairment.
[00:09:17] Not everyone with mild cognitive impairment will go on to get dementia, but it is a big risk for dementia. And so to answer your question, you know, it's always worth looking into these things. If you are a family member noticed more trouble than you would expect, that's when you want to talk to your primary care physician or see a neurologist like myself to say, hey, where am I in this spectrum?
[00:09:44] And do I need to be worried and think about the future differently? So touching on dementia now, Lewy body dementia is something I've never heard of this, so I'm intrigued by it. But what exactly is it and what makes it distinct? And what makes it the most actually commonly misdiagnosed version of dementia out of all of the four? Yeah, so Lewy body dementia, many people have not heard of. It is actually probably the second most common form of dementia.
[00:10:13] As I said, unlike Alzheimer's disease, where amyloid and tau is the protein that builds up, in Lewy body dementia, it's a protein called alpha synucleum. And it tends to have very characteristic presentation or symptoms early in the course of the disease. So one of the things that people notice early on actually are hallucinations, both visual, meaning what they see, or auditory, meaning what they hear.
[00:10:43] This can occur very early in the disease course. Now, in Alzheimer's disease and other dementias late in the disease, it could certainly have some hallucinations. But this tends to present much more early. They also have this kind of fluctuating level of alertness. So if you think about you and me talking right now, I pay attention to you, you pay attention to me. In neurology, we call that alertness.
[00:11:09] They will have periods of time where they sort of drift off and are not as interactive or as alert as they may be. And then they're back to normal and then they drift off again. And then sometimes in Lewy body disease, because it is the same protein, that alpha synucleum protein, that builds up in Parkinson's disease. They often start to have symptoms that look a little bit like Parkinson's disease. So their balance may be affected.
[00:11:37] They start to move a little more slowly. And those symptoms can all indicate what we call dementia with Lewy bodies. Many people may not be aware, but probably the most famous case of this recently was Robin Williams. And that's what he died from. So he was initially told that he might have Parkinson's disease because, again, Parkinson's disease and dementia with Lewy bodies can look somewhat similar.
[00:12:03] But at autopsy, he actually turned out to have dementia with Lewy bodies, which may have led to some of the things that ended his life earlier. So interesting. And for example, what we were talking about, specifically Lewy body and people that don't know the differences and that there are differences, we just hear one thing and we assume that it's all under the same umbrella.
[00:12:27] And without there being, quote unquote, you know, like an actual cure, even though now we're learning there's medications that can, I'm sure, be very scary and overwhelming and, you know, tie into other things. I'm just basing this off the Robin Williams situation, but it's scary. So this is so helpful to really learn that there are medications and there are things that can make it more livable and allow you to have a decent quality of life, even with this diagnosis.
[00:12:54] And speaking about Lewy body, there is a specific medication danger in Lewy body that every family member and every ER doctor really should know about. So I don't know about it, but can you kind of walk us through that and what that is? Yeah, so it's an important fact to know. So in the diseases where the alpha synucleum protein builds up, so Parkinson's disease and dementia with Lewy bodies, there is often a loss of a chemical in the brain called dopamine.
[00:13:21] And so we want to do everything we can to kind of help that and certainly not to hurt that. One of the challenges then is that in dementia with Lewy bodies, people have hallucinations. And one of the most common medications that we give to patients who have hallucinations, like people with schizophrenia, are drugs that block dopamine.
[00:13:43] And so if you already don't have enough dopamine and then a doctor were to give that patient a drug that blocked dopamine, we can make patients a lot worse. And so it is important in dementia with Lewy bodies to avoid drugs that block dopamine. Whereas in the other dementias, we actually use those drugs very routinely if they start to have the hallucinations. And I can be completely wrong here. And this is again me going a little rogue.
[00:14:11] But it sounds like there's a lot of correlation between this and mental health as well. Yes, so very much so. So behavior is a big part of the way our brain functions, right? And so as the brain gets damaged, and particularly different parts of the brain, then people's behaviors can be very affected.
[00:14:30] And very often, sadly, the reason families have to put a loved one into a nursing home or a memory care clinic is not necessarily because their memory is bad. But it's really because they can't control their behaviors anymore. And that requires 24-hour care. And it's very difficult for families to do that.
[00:14:54] So again, being aware of the type of dementia, letting families and loved ones know what to expect if people's behavior changes. Those are all very important parts of the life care planning that we have to do when we make a diagnosis of dementia. Because again, by definition, dementias get worse with time. So if we see your loved one today, the odds are a year from now it will be worse.
[00:15:23] And in another year it will be worse. And so planning for that ahead of time helps take a lot of the stress away from an already very difficult situation. Speaking about this, we talk about aging and usually Alzheimer's and dementia. It's more common in older people with age. But frontotemporal dementia is actually something that affects younger people, younger populations. So I don't know, but I think it looks completely different than others.
[00:15:51] But what does it actually look like and how is it often misread? Yes. So again, it's another form of dementia. Different than Alzheimer's, different than dementia with Lewy bodies in terms of the protein that builds up. So in frontotemporal dementia, it's a protein called TDP43. And this protein likes to affect early on the front part of the brain here and then the temporal lobes kind of on the sides.
[00:16:19] And those parts of the brain are very important in behavior. So as I mentioned before, late in a dementia, any of the dementias can have behavioral issues. In frontotemporal dementia, that tends to be a very early symptom. And that symptom can look different in different people. But very often, people that have never been aggressive in their lives will become very combative, very aggressive, even with their loved ones.
[00:16:47] They have got a lot of difficulty sort of self-regulating. So if someone does something to you, you know, the road rage thing, right, most of us will get irritated for a second. And then the front part of our brain says, hey, this is not worth, you know, getting into a fight over. In frontotemporal dementia, those impulses become much more difficult to control. So they're more irritable than they've been before.
[00:17:11] And as you mentioned, this is definitely one of those overlaps where they're often seen by psychiatrists before they get to neurology because people say, you know, they're going nuts. They've never been like this before. And now they're angry and flying off the handle and doing strange things. And it does tend to affect younger.
[00:17:33] So in the 50s and 60s, as opposed to dementia with Lewy bodies and Alzheimer's, which, again, there are young onset forms of those, but more likely in the 70s or 80s. So a 50-year-old who starts to act strangely, you could imagine them ending up at a psychiatry office before a neurology office. But it is a very unique form of dementia. And I'm curious, too, because you mentioned 50s and 60s.
[00:18:00] But is it when I thought about younger population, I was thinking even maybe 30s, 40s. And the way I was thinking about it was like psychiatry, right? So mental illnesses. I'm wondering, does it happen before 50? Is it rare or impossible? It's pretty rare before 50. Yeah. I mean, again, Alzheimer's disease, when we talk about young onset Alzheimer's disease, that might start in about the 50s, early 50s. Pretty rare before them.
[00:18:28] And frontotemporal dementia would be pretty rare before the 50s. But the majority will be in their 50s and 60s, as opposed to the majority of Alzheimer's, which will be in the 70s and 80s. Interesting. Okay. So vascular dementia. So what exactly is that? How is it different? What's driving it? But also, how is it linked to things that patients can actually influence? Is this one of the forms that you can really change a little bit? Yeah.
[00:18:58] No, very much so. So vascular dementia is a different type than we've been talking about. And what it refers to are people that are having strokes. So if you think about a stroke, when a stroke happens, a part of the brain dies. If that part controls your language, then people don't talk normally. If it controls your vision, people lose their ability to see, etc. But there's a lot of the brain which doesn't have very specific functions.
[00:19:27] And so people can have strokes that we see on MRI scans or CAT scans that don't present with an obvious stroke symptom of paralysis or blindness or not speaking. If you have a little bit of that, the brain has enough reserve, enough extra brain that you're okay. But if you start to have a lot of these areas that are damaged, over time, the brain can't compensate anymore.
[00:19:54] And so then people start to have cognitive issues and all the things that we've mentioned, not because the proteins are building up in the brain, but because parts of the brain are dying. And it's really just like a stroke. And so then you say, okay, well, what is the risk factors for stroke? And the main risk factors for stroke have to do with high cholesterol, diabetes, and hypertension.
[00:20:20] And those are things that we can help modulate because we have medications to treat all of those. So again, when we see people that are losing their memory, losing their ability to function, we will always do an MRI scan of the brain. And one of the things that we're looking for is their evidence that there have been previous strokes.
[00:20:42] So one other clue to someone having vascular dementia is that unlike the other dementias, which are very gradual, right? The proteins build up over a long period of time very slowly. So that if you take a person with Alzheimer's and you say, how are they today compared to a year ago? You would say, yes, they're worse. But if you said, how are they today compared to yesterday? They would be the same because the change is so gradual.
[00:21:11] In vascular dementia, because they're actually having little strokes in their brain, they often have what's called a stepwise progression. So, yes, if you look back a year ago, they're worse. But you might actually say, oh, at the beginning of June, they could do X. But then all of a sudden, they couldn't do X anymore. It seems to be very sudden, the changes, because what's happening is a part of the brain has died.
[00:21:37] And then the loss of that part of the brain causes a very sudden change in their cognition. The other forms of dementia don't really have those sudden changes. So that can often be a clue that it is really blood vessels that are the problem. And then we have to try to protect those blood vessels.
[00:21:58] So getting people to exercise more, treat their diabetes, treat their blood pressure, treat their cholesterol, all of those become critical in managing someone that has vascular dementia. And now speaking of dementia, now we know there's four different types. But is mixed dementia something that's possible? Is it possible that people have more than one version of dementia simultaneously? And is it common or is it rare? Is it possible?
[00:22:26] So it's actually much more common than we've ever thought. And the word that we now attach to that is called co-pathology. So, for example, if you take a 70 or 80-year-old person who has Alzheimer's disease, but they also have diabetes and hypertension and cholesterol, they're going to be progressing because of their Alzheimer's disease. But they're probably also going to be having these little strokes and progressing because of vascular dementia.
[00:22:53] That's a very important thing to recognize because, again, we have ways to try to really affect that vascular dementia by protecting their blood vessel and having them live a better lifestyle and take their medications. We also know that whatever is at the heart of causing these proteins to build up can often affect more than one protein.
[00:23:16] So, again, at autopsy, where we can really study these brains, what we see is about 30 or 40 percent of the time a person with Alzheimer's disease will also have the same proteins as dementia with Lewy bodies.
[00:23:34] And this is really a big area of emphasis now for the pharmaceutical companies because they're saying, hey, we've invested billions of dollars to try to find medicines to really change these diseases. And nothing has been spectacular yet.
[00:23:54] And one of the reasons may be if you're trying to treat a person with Alzheimer's disease that has multiple other reasons for their dementia, reducing the amyloid may never be the only thing. We may need to have drug cocktails like we do for HIV. Right. So when HIV, we first got the first drugs, they helped with the disease, but people still died of HIV.
[00:24:19] Now we have many, many drugs for HIV and we can put the cocktails together. And if people take their medications, they should never die of HIV. We don't cure it, but we stop them from dying from their disease and they lead a normal lifetime. I think dementia may be very much like that as well, which once we start to have better ways to know and diagnose the type of dementia, then we can develop specific medications for each type.
[00:24:48] One patient may need just an Alzheimer's drug. Another may need an Alzheimer's drug plus a dementia with Lewy body's drug. And by focusing on that kind of precision medicine, we may really be able to get much better treatments that we have today. Speaking about that, how does this actually work? Like, how do you sort this out within the clinic itself? Can you kind of walk us through the workup of what you would do when someone has dementia and, you know,
[00:25:16] dementia is on the table, but the type may not be clear or there's other factors going on? Yeah. So it's complicated. It's changing as we speak. But the 2026 approach to this would be some type of imaging so that we can see the brain. And that could be an MRI scan. We have specialized types of MRI scans now that can measure these different parts of the brain.
[00:25:41] In some cases, it's what we call a PET scan or a DAT scan, which are even more sophisticated types of imaging. But we want to get a sense of how does the brain look? Are there parts of the brain that are shrinking faster than other parts? Is someone having these strokes like a vascular dementia? So that's a very important kind of first step. The second, which is really sort of evolving as we speak, is the concept of biomarkers.
[00:26:08] So again, because each of these diseases is associated with a different protein, we really want the ability to measure that protein. And the exciting thing is, at least today, we have good ways to measure amyloid and tau from the blood. So it's a simple blood test. And then we have good ways to measure alpha-synuclein. That requires either a little skin biopsy or spinal fluid.
[00:26:36] We don't yet have good ways to measure TDP-43, but there's a lot of research kind of focused on that. So in a lot of ways now, we use these biomarkers to say someone is losing their memory. They have elevated levels, let's say, of alpha-synuclein, and they have some hallucinations. Putting that all together, we could get pretty good and say we think this is most likely going to be dementia with Lewy bodies.
[00:27:03] For another patient, we might say they're losing their memory. They have elevated levels of amyloid and tau in their blood. We think this is going to be much more likely to be Alzheimer's. And then by using the different tests together, you get to the answer of could there be co-pathology? Could someone have amyloid, tau, and synuclein?
[00:27:24] So it's a combination of all of that right now and then still really emphasizing the importance of the clinical picture and knowing that we're never going to be 100% so that once we make a hypothesis and we say we think this is Alzheimer's disease, it's then very important to follow that patient and say in six months and 12 months, is this progressing like a person with Alzheimer's?
[00:27:51] And if so, then my hypothesis was probably correct. If they're not, then I have to go back, scratch my head and say maybe I was wrong and let's think about how we could diagnose them in a better way. And touching on that, I'm sure you get patients coming to you all the time that have a diagnosis from another doctor. So when that happens and a family comes to you with a dementia diagnosis from elsewhere, how do you actually end up handling that?
[00:28:18] Like, how do you end up changing it and what is a really common correction that you tend to make? Maybe a misdiagnosis you've seen. Yeah. So in the old days, 100 years ago, when neurologists did very, very little, one of the things that they were very famous for was being very patient.
[00:28:37] And what I mean by that is, if I see someone today, if I could magically know what they're going to be like in 10 years, if I had that long to wait, I would be very smart. Right. Now, patients and families don't want to wait 10 years for me to be very smart. They'd like me to be very smart today.
[00:28:56] But the truth is, probably the most important thing is the clinical course, is the progression consistent with what I thought that they had or what another neurologist thought they had that came to see me. So typically in the dementia space, the change in diagnosis or misdiagnosis is really not necessarily wrong. The first doctor, again, made their hypothesis. This is what they thought.
[00:29:24] But then something about the patient just doesn't fit what we expect them to be. And then we take a step back. And so that might mean, again, doing the same tests again. The use of the biomarkers is not fully across all neurologists yet. It is new. And so I will see patients where I'll use those tests to be more specific about what's going on with them.
[00:29:50] And then the other important misdiagnosis is particularly in a younger population of patients. So now let's say 30 to 50. There's lots of reasons to have memory issues that are not dementia. And so one of the more common things that I'll see is someone was told that they have mild cognitive impairment or told that they have dementia. But again, they don't progress that way. And we find that there's other reasons. It could be other medical reasons.
[00:30:20] It could be psychological reasons. There's lots of things that, again, affect the way our brain is working. And I sort of explain that to people sometimes. And I say, if you think about dementia and our brains as a computer, dementia is a hardware problem, right? The drives are not working. It's the whole system is failing. But there are many things that can cause a software problem, right? And so if you think about your phone, all of a sudden one day doesn't work.
[00:30:48] If you turn it off and turn it back on again, now it works, right? That's a software problem. And so there are many instances where we will see people that are worried that they have dementia. And the good news is that they don't. We have to figure out why their brain isn't working the way that they want it to. But often it's not a hardware problem, which is obviously a much more concerning problem.
[00:31:11] And then for families, let's say watching a parent change or watching a loved one change, their memories slipping. You know, we talked about this earlier. Their personality starts to shift a little and like something just kind of feels off. We talked a little bit about it, but what are the early signs across these types that should really make them pick up the phone and make that call and look into this deeper? Yeah.
[00:31:34] So very often what brings a patient into my office is not the patient saying that they can't remember things. It's really the family member saying we see a change. Sadly, with dementia, as the brain doesn't function well, the person is often not aware that they don't function well. And so it is often the family member, the spouse, the children that will say, hey, something is really wrong here and let's get it evaluated.
[00:32:04] I think because for 100 years we've had nothing really to offer, there's still a big feeling out there in the community of I don't really want to know. There's nothing I can do anyway, and I'm just going to leave it alone. But the truth is we have lots of ways to intervene. As we talked about, if there's a component of vascular dementia, we can help.
[00:32:29] We know that sleep and diet and exercise slow the progression of all forms of dementia. And so being aware that there's a problem early on actually gives us the best chance to change the course of the disease. So the real answer is, you know, if you or a loved one are worried that something is not the same, something is slipping, it is better to be evaluated as soon as possible.
[00:32:55] Because the more nerves that die, the less likely we can do anything to really kind of slow that down. So early diagnosis for all of these neurodegenerative diseases is really the key these days because whether it's medications or lifestyle or life planning, these are all things that we can actually change.
[00:33:18] Let's say your own loved one or a parent got a dementia diagnosis elsewhere and you really wanted to make sure that it was the right type that was part of that diagnosis. What specifically would you go back and ask for that might maybe not have been done? Yeah, so I think the thing that probably for many people has not been done is really looking at these biomarkers.
[00:33:42] So if you've been told that you have Alzheimer's disease, getting checked for the amyloid and the tau protein is really the cutting edge now to confirm that diagnosis. If you want to be more aggressive, then looking for alpha-synuclein to see if there's more than one pathology. If it's more a diagnosis of dementia with Lewy bodies, then looking for alpha-synuclein first and then possibly amyloid and tau later.
[00:34:10] So the biomarkers really are the big explosion. So the first biomarker was approved by the FDA for Alzheimer's disease last year. We've got more and more sophisticated biomarkers coming. And so really almost anyone who's been diagnosed, you know, three plus years ago, unless they were in a research setting, probably did not have these tests.
[00:34:32] And as I said, we do know that the diagnosis is wrong about 30 or 40 percent of the time, regardless of how good the neurologist is, because we just haven't had the specific tools to be able to be confirmatory about our diagnosis. And I think that there's so much to get into in future episodes because there's so much to learn for different diseases. And one word really covers them all.
[00:35:00] But I think that a key takeaway from this episode is really knowing the difference may be the most important thing that a family can do and for their loved one. And even for weeks after the dementia diagnosis, one of the most important things they can do is really learn and understand the kind of disease that they have within the four different ones. And next episode, I'm excited to get a little bit deeper into one of the ones that are most commonly missed of the four, which is Lewy body dementia.
[00:35:27] So I'm interested to learn about the visual hallucinations, the REM sleep clues and all the dangerous misdiagnosis that really puts patients at real risk. So thank you so much, Dr. Levine. This is a great episode. I can't wait to learn more about this. And I know our listeners are probably getting so much from this. And if you are listening for the listeners listening, make sure that you do follow, subscribe and share the show. And Dr. Levine, are there any other things that you want to mention before we wrap up? No, I think that's great.
[00:35:56] I look forward to kind of, as you said, diving into some of the more specific dementias in the next few episodes. Absolutely. Thank you so much. This was such an informative conversation as always. And I can't wait to speak to you soon. And for the listeners, remember, follow, share and subscribe. And I will talk to you soon. Great. Thank you.

