Ask Us Anything About… Dementia

Scott Gilbert – From Penn State Health, this is Ask Us Anything About Dementia. I’m Scott Gilbert. It seems we all have questions about dementia perhaps because nearly everyone knows someone who’s personally affected by it in one form or the other. Here to provide answers today about the causes, risk factors, treatments and more is Dr. Chen Zhao. She’s a neurologist at Penn State Health Milton S. [inaudible]. Thanks so much for being here today. I’d like to start with a question about how you differentiate clinically between routine memory loss and dementia because, I mean, I forget things every day. I think pretty much everyone does. But I’m wondering where that line is drawn, again, from a clinical standpoint?

Dr. Chen Zhao – That’s a great question, Scott, and thanks for inviting me to be here today. So routine memory loss, a bit of forgetfulness comes with aging and that’s because some of our thinking ability does get worse as we age. But what distinguishes normal aging and dementia which is really pathological is really what’s going on in the brain. So in dementia, a type of abnormal protein builds up in the brain and the brain cells start to die. With normal aging, the brain shrinks a little bit but really that same type of pathological process with the protein buildup and cell death does not occur. So that’s what happens biologically in our brain. In terms of symptoms, it’s really a matter of severity. Everyone is perhaps a little bit more forgetful in their 60s versus in their 20s, but for people without dementia, that forgetfulness does not reach the degree of severity with dementia. In dementia, people lose the ability to take care of themselves, do the things they used to do like pay their bills, handle their own finances, to drive, to cook. So really in dementia the symptoms are much more severe.

Scott Gilbert – Versus say someone who, maybe, they’re stressed and they tend to forget things when they’re stressed, right? That’s pretty common from what I understand.

Dr. Chen Zhao – Certainly, yes. With stress, that can definitely make a person more forgetful. If anyone is in a stressful situation, taking a test, being on a live broadcast, certainly that’s more likely to induce brief forgetfulness. But in those cases, the person might forget briefly but the right answer usually comes back to the person later on. In someone with dementia, let’s say Alzheimer’s types of dementia, the forgetfulness persists. Meaning, the person might not remember something and the right answer does not come back later on. They have fully forgotten it.

Scott Gilbert – And so, what you’re saying is inside the brain then, in the case of dementia, there are physiological changes, there are things happening. I think you mentioned plaque buildup and that type of thing?

Dr. Chen Zhao – Yes, exactly. So in dementia, there’s abnormal proteins that clump together and build up. With Alzheimer’s disease, the type of plaque, the type of protein is called beta amyloid. Beta amyloid aggregates, meaning, they come together abnormally and that happens in Alzheimer’s disease. In someone who is just experiencing regular aging, they don’t have those abnormal clumps of beta amyloid. So what’s happening in the brain really is truly different.

Scott Gilbert – You’re watching Ask Us Anything About Dementia from Penn State Health. I’m Scott Gilbert alongside Dr. Chen Zhao. She’s a neurologist at Penn State Health Milton S. Hershey Medical Center. We welcome your questions. Feel free to add those to the comments section here, and we’ll get to those whether you’re watching this interview live here on Tuesday or if you’d like to ask questions after the fact and add your questions, we’ll answer you in writing. So, Dr. Zhao, I imagine there are a number of different causes of dementia and probably as many different causes as there are types. So it’s not just things like some of the types of dementia we’ll get into later like Alzheimer’s and Lewy body, but I mean, can trauma be a cause of dementia?

Dr. Chen Zhao – So those are great questions and the truth is regarding dementia especially the late onset dementia that we’re familiar with, meaning, it happens later in life, it’s multi-factorial, meaning, there’s not one cause. We have identified risk factors where if a person, let’s say smokes or does other things, these are risk factors that increases the likelihood that person will develop dementia later on in life. There are also earlier onset types of dementia that are more determined by genetics, the genes that we inherit from our parents. So there is a difference between the causes of early onset type of dementia and later onset. Most of the time when we’re talking about dementia in conversations like this and most of the time when we’re thinking about dementia in family and relatives that happen later on in life, it is referring to the later onset types of dementias. And the causes of those later onset dementias, again, is more than one cause and we don’t truthfully have a great handle on the causes of those dementias which is why we don’t have effective treatments of dementia.

Scott Gilbert – And you mentioned genetics as a risk factor. So some people watching may wonder, oh, I have a family member perhaps even a parent who has dementia, late onset, the type you mentioned. Does that put me at increase risk and if so, what should I do about it?

Dr. Chen Zhao – It’s certainly — yes, it is certainly a valid concern. When you have a parent, your mother or father who has dementia that increases your own risk for dementia by something about three-fold for late onset dementia. In terms of what you can do about it, there are things that you can do to improve your general health, your cardiovascular health which is the condition of your heart, and the health of your blood vessels because we do know that improving the health of your blood vessels also helps improve the health of your brain which depends on the blood that your blood vessels supply to the brain.

Scott Gilbert – And I feel like every time we talk about an illness on Ask Us Anything About it does go back to eating right and exercising. And when it comes to reducing risk factors for dementia, you’re saying the same thing, right?

Dr. Chen Zhao – Exactly. Yes. And that is a great point. And really, what’s good for the heart is good for the brain. The brain is part of the body. The heart is so very important. It’s responsible for pumping blood to our organ systems including our brain and exactly those kinds of things such as diet, sleep, exercise those are the things that are beneficial for general health but also beneficial for your brain health. And it is possible by modifying some of those lifestyle risk factors you might lower your risk for dementia.

Scott Gilbert – From Penn State Health, it’s Ask Us Anything About Dementia. I’m Scott Gilbert alongside Dr. Chen Zhao who welcomes your questions in the comments section below this Facebook post. Feel free to type them in and we’ll get to as many as we can in the time that we have or even after the fact if we don’t get to them all here. So let’s talk about some of the different types of dementia starting with — I feel like Alzheimer’s disease is a good place to start because, correct me if I’m wrong, that is the most common type of dementia, correct?

Dr. Chen Zhao – Yes, exactly. Alzheimer’s disease is the most common type of dementia and it’s the one most people are familiar with. So a common question that I get sometimes from my patient is, “What’s the difference between Alzheimer’s disease and dementia?” And the answer to that is dementia is the more general or broad umbrella term whereas Alzheimer’s disease is a more specific term. Alzheimer’s disease is the most common type of dementia but there are other types of dementias. So one way to think about this is if you think of dementia like a car, there are different types of cars. There’s Ford, there’s Volvo, there’s Honda, there’s Toyota, there’s many different types of cars. But there’s some type of car that is the most common in any given geographical area. So you can think of Alzheimer’s disease as like the most common type of car, whatever the most common type of car is where you live.

Scott Gilbert – And so, when it comes to Alzheimer’s disease then, what are some of the distinguishing characteristics, some of those things that occur that tell you, as a clinician, that that may end up being the diagnosis?

Dr. Chen Zhao – Yes. So, Alzheimer’s disease, some of the most common signs are related to memory loss. The way to distinguish between different types of dementias is really what symptoms happen at the onset, early on in the disease. Because later on, with advanced dementia whether it’s from Alzheimer’s disease or Lewy body dementia or any other type of dementia, when you get far enough along, the symptoms all look pretty much similar, which is the person becomes bedridden, bedbound, unable to talk, unable to communicate, not understanding very much. But early on is when we can distinguish between those types of dementias. So for Alzheimer’s, the key is memory loss, being forgetful, misplacing things, repeating oneself in conversation.

Scott Gilbert – And so then, let’s contrast that with Lewy body dementia which you mentioned. You know, a lot of folks have probably heard of that, but what are the different traits of that especially near onset?

Dr. Chen Zhao – Sure. So, Lewy body dementia, you may have heard of Robin Williams suffering from Lewy body dementia. It is quite different. So whereas Alzheimer’s disease, memory loss is prominent early on, with Lewy body dementia, sometimes it’s more psychiatric symptoms and including things like hallucinations or paranoia or anxiety or delusions. So oftentimes, it does get misdiagnosed. Lewy body dementia is, in fact, one of those types of dementias that often suffers a tremendous delay in diagnosis where a person may have seen three or four doctors before they arrived at the correct diagnosis. And that’s because the symptoms can be so broad and psychiatric. Later on Lewy body dementia also exhibits physical signs of Parkinsonism so things like tremor or moving more slowly or being more stiff. So clinically, in terms of symptoms and signs, it really is quite different.

Scott Gilbert – And when it comes to — let’s talk about frontal temporal dementia which I understand is more common in younger patients, correct?

Dr. Chen Zhao – Yes. Exactly. It is a leading cause of dementia in people age 65 and younger. So it is something that doesn’t get as much press and it is quite challenging to deal with. The symptoms of frontal temporal dementia are, again, more psychiatric. So classically, the person with frontal temporal dementia, they might be more impulsive. They might exhibit a sudden change in personality or they might blurt out inappropriate comments in social situations. They might take up new hobbies that are unusual for them such as gambling or somebody quitting their job or having affairs. So really, many of the symptoms are psychiatric and often mistaken. People might understand it as a midlife crisis. They might think they’re depressed. They might think they’re going through something socially but it could be the start of a dementia process which is frontal temporal dementia.

Scott Gilbert – It is so interesting to go back to what you said, the distinguishing traits are about how different types of dementia present in different ways especially initially and it’s actually a little bit scary, too, to hear about those. You know, when people — I hear you say that genetics could be a factor, that would suggest that someone could be tested for a certain type of gene that could tell them if later in life they’re at risk of developing a certain type of dementia. Here’s an ethical question for you. Does it make sense to do that for an illness where there really aren’t many treatments and no known cures?

Dr. Chen Zhao – That’s a fantastic question. And when people think of genetic testing for dementia, some of our audience might use 23andMe or one of those other commercial genetic testing services and come across information about themselves. Some of my patients come to me, saying they’ve been — they received genetic testing and they found out they were positive for APOE-e4 which is a genetic risk factor, the strongest genetic risk factor that we know of for late onset Alzheimer’s disease. So that is something that some of my patients do come to me saying they got this genetic testing themselves through a commercial service and what do I do about it. The answer is that what we know about these genetic risk factors largely remains at the stage of research. Meaning, there are some research studies in people with this genetic mutation, APOE-e4, this genetic risk factor that shows some intervention such as exercise or lifestyle changes perhaps has a different effect on this group of people versus people who don’t have that genetic risk factor. But that comes from a realm of research, meaning, it’s not necessarily ready for prime time. If the research findings were really strong and robust, then it will become a clinical recommendation where all neurologists or physicians are aware that for this group of people with this genetic risk factor, certain recommendations are made but we’re not at that stage. So the short answer is really actually we do not recommend genetic testing in the case of late onset types of dementias precisely for that reason because once you test positive, it’s not clear what should happen. This differs from the early onset dementias in which certain genes are known to be positive meaning, if you have that mutation such as presenilin-1 or presenilin-2 or amyloid precursor protein, if you have that genetic mutation then you definitely will develop early onset dementia so it’s quite different. But for the types of dementia, we’re talking about most people are familiar with which is the late onset dementia there is really not a role currently for genetic testing.

Scott Gilbert – It’s a tough question. I appreciate your answer to that. You’re watching Ask Us Anything About Dementia from Penn State Health. Dr. Chen Zhao is with us today. She’s a neurologist at Penn State Health Milton S. Hershey Medical Center. We welcome your questions, your comments, feel free to add those to the comments section. We have a question now from Stacey [assumed spelling] who says as far as vascular dementia, why the vivid audio and visual hallucinations which can be so scary? So it sounds like she’s asking, what kind of causes those? What’s going on in the brain?

Dr. Chen Zhao – Right. So, I imagine perhaps that question stems from some personal experience with someone with vascular dementia who exhibits these types of symptoms with hallucination. And the answer really is that it just has to do with what region of the brain is involved that causes these different symptoms. It’s not particular to vascular dementia per se, but it’s more, it has more to do with the regions of the brain that’s involved. When certain regions of the brain are involved in Alzheimer’s disease that causes memory loss for example, in people with Lewy body dementia, so in other parts of the brain, different parts are involved. And that’s why people with Lewy body dementia classically present with more hallucinations. So the short answer is it just has to do with what region of the brain is involved.

Scott Gilbert – We will be talking about research which you touched on. There’s actually some research happening at Penn State Health that we’ll be getting to in just a little moment here. But first, I want to ask you about the drug aducanumab which the FDA approved just yesterday using its accelerated approval program. It was intended to slow the progression of Alzheimer’s disease, at least that’s the intent here. But what do we know at this point about whether it actually does so? Are you interested in this development as a clinician?

Dr. Chen Zhao – Certainly, I think as neurologists we are all very interested in this development. Aducanumab’s approval is really quite remarkable and it is the first of these modifying treatments that we have for dementia. The existing treatments that we have for dementia are all symptomatic treatments. Meaning, they improve the symptoms without altering the underlying pathology in the brain. So from that standpoint, it is certainly newsworthy and something all neurologists are paying close attention to. In terms of its approval, like you said, it was approved under an accelerated pathway and there are some caveats to that approval. One is that the FDA is requiring a continue — a new randomized control trial to further monitor the effects of this drug to make sure that it actually works. Meaning, it’s actually clinically effective for what it’s supposed to do to improve these symptoms. And if this new clinical trial demonstrates the drug does not improve symptoms, it can revoke its approval. So that’s one thing to be aware of. The second thing to be aware of as most of our audience probably know or through reading some of the news report, that this drug is controversial. Its approval was expedited and there’s some excitement about it, but I would say, to be cautious and to continue to follow along the news developments.

Scott Gilbert – All right. We have another question from Stacey. This is a really good question. She says, “How can you determine the stages of someone with Alzheimer’s and other types of dementia?” And I guess kind of at what stage they’re at, at the time of diagnosis, even beyond as they progress?

Dr. Chen Zhao – Yes. So that’s a great question and the answer is it has to do with their ability to do certain basic things, if the dementia is mild versus if it’s more severe. But there is not, I would say, uniformly a great way to stage it. It’s more based on the clinical impression which is determined by bringing your loved one to the neurologist and having the person assessed formally by a neurologist. One metric that does help is neuropsychological testing. So if your loved one was ever seen by a neurologist and referred to a neuropsychologist to get some cognitive testing, that cognitive testing, the scores are compared to the general public. And by using a score, let’s say if the person repeats that testing in a year and in another year, that’s one way you can kind of quote, unquote measure the degree or the severity of the dementia and also, see how it progresses from year to year. But again, these are just very rough measures and there is not a clear and hard cutoff to say a person now is at a particular stage. And our treatments are based largely on clinical monitoring. So, again, I would urge everyone to bring the loved one for evaluation with a neurologist and a specialist, a dementia specialist if possible.

Scott Gilbert – Our next question is from Mary [assumed spelling]. It’s kind of along the same line. She’s asking what the life expectancy is of somebody who’s been diagnosed with Lewy body dementia. And I would just add to that, is it the same or even similar in every case?

Dr. Chen Zhao – Right. So that’s a great point, too. So life expectancy or a prognosis, that’s a common question. It does vary for the dementias. In certain variants of frontal temporal dementia, the life expectancy is longer, for example, than in Alzheimer’s disease. But when I give an answer like that, that’s just speaking statistically from a large sense of evaluating groups of people. So for any individual person, I assume a person who’s asking about that is thinking about a specific person or maybe their loved one or someone they know wondering practically how long do they have to live? What is the quality of life for that remaining time? And for that, it varies quite a bit on an individual basis and it is not possible to predict at an individual level exactly what is the life expectancy. One way that we can get an estimate is by seeing how fast they decline from year to year. So if they go to see a neurologist, for example, they come and see me, I refer them to a neuropsychologist for cognitive testing and then the next year we do the same thing, I refer them for cognitive testing and they really have declined, then that would suggest a worse prognosis. Meaning, the person is going downhill at a rapid rate. So the best predictor at an individual level actually is the person themselves and to establish how fast they’re declining requires the person to follow up year by year or every six months with their neurologist. So those types of questions really should be addressed on an individual level with the individual physician.

Scott Gilbert – All right. We have another question now from Ann [assumed spelling] and she’s going where I was going to go next actually and that is, what is the best treatment for Alzheimer’s, she’s asking. I was going to ask you about medications because we did touch briefly on aducanumab but also, therapy, rehabilitation, you know. What do we know at this point that if it doesn’t stop the progression, anything that might slow the progression or at least lead to a better quality of life?

Dr. Chen Zhao – Sure. And that’s a really relevant and practical question. The existing treatments we have for Alzheimer include the cholinesterase inhibitors. You might have heard of some of these medications such as Aricept or donepezil, a very common medication. Another one is rivastigmine or the Exelon Patch. These are cholinesterase inhibitors and they’ve been around since the late 1990. We also have another medication for moderate to severe Alzheimer’s disease called memantine or Namenda and that’s really an adjunct of medication used when the dementia becomes more severe. These medications I just described are all symptomatic medications. Meaning, they are used to improve some of the symptoms of dementia. However, they do not affect the underlying disease process or pathology in the brain. So a way to think about this that I tell my patients is let’s say your child has a virus causing them some cold symptoms, some sore throat, some cough. You could give them a cough syrup which might make them feel better, it might suppress the cough. However, that cough syrup is not doing anything to kill the virus. It’s not an antiviral medication. So that’s the difference between a medication that treats symptoms called symptomatic treatment versus a medication that truly gets rid of what’s going on which will be an antiviral medication for a cold.

Scott Gilbert – We’ve still got a few minutes left in which we welcome your questions for Dr. Chen Zhao, a neurologist at Penn State Health Milton S. Hershey Medical Center. Just add those to the comment field below this Facebook post and we’ll get to those as we’re able to. Now, in addition to being a clinician, Dr. Zhao, you’re also a researcher at Penn State College of Medicine and to that extent, you’re also preparing to launch a dementia prevention research clinic. Can you tell us a bit about that and what you hope to learn through this clinic?

Dr. Chen Zhao – Definitely. So, yes, in addition to the patients and the clinical work that I do, I spend a fair amount of my time on epidemiological research and my area of focus is on lifestyle factors and how that influences dementia risk. And as Scott mentioned, I’m starting a dementia prevention research clinic which is an opportunity for all my patients one, to be seen by a dementia specialist, myself. And two, to participate in research and add to our collective body of knowledge for how to prevent dementia which currently has no cure even though recently aducanumab was approved and it is the first disease-modifying treatment that we have approval for. But largely, preventing dementia at this point seems to be more fruitful because we do not have really great treatments once dementia occurs. So the dementia prevention research clinic is an opportunity for patients to allow their data to be used for research. Meaning that during their normal clinical visit with me, they consent to donate an extra tube of blood that’s collected and used by researchers. So it’s an opportunity for anyone with any kind of thinking difficulties to receive a clinical evaluation and also contribute to research.

Scott Gilbert – And that’s the beauty of clinical trials as a whole, right? It’s an opportunity to have access to some cutting-edge therapies but also to contribute to, you know, the balls of research moving forward. So that’s great. We have a question here from Ann who’s asking whether anti-anxiety medications ever helped with Alzheimer’s patients or if they’re contraindicated.

Dr. Chen Zhao – So, anti-anxiety medications sometimes are used for Alzheimer’s patients and certainly antidepressants sometimes are used for Alzheimer’s patients as well. However, what I will say is that the patient with Alzheimer’s or dementia, live in a different world than you and I in the sense that things have stopped making sense. So if you imagine yourself in a situation where the world is kind of nonsensical, you may become anxious too. So sometimes the best way to address that is not necessarily to just medicate someone or heavily sedate them, it’s to change the environment. It’s to think about how can we modify the environment or modify the way we interact with our loved one to make that environment more familiar, more safe, more comfortable? And the answer to that is not always the prescription of medication. The second thing I’ll say is that depression in someone with dementia does not necessarily look the same as depression does in someone without dementia. Someone without dementia, if they’re depressed they might cry. If you ask them why they’re crying, they might give you an answer. I’m thinking about this or that. But someone with dementia, the world is different, the world might seem chaotic. If they feel sad they might act out. They might become agitated, they might yell, they might scream, and sometimes we use antidepressants in those cases. So really, the best way to find out what medications may or may not help a dementia patient is to follow up with a neurologist.

Scott Gilbert – So just as with the course of disease, the treatment that’s best for that person will vary greatly even with some — one person to another who had the same diagnosis.

Dr. Chen Zhao – Yes, exactly. It depends on the individual factors and it depends on the environment they’re living in, whether they’re living at home or in a group home or in a nursing facility. So all those things can make an impact on which is the best treatment for a given person.

Scott Gilbert – All right. Ann says thank you. I would say thank you, Ann, thank you, Michelle [assumed spelling], thank you, Mary and everybody who asked questions. Stacey as well. I would like to end on a — I’m looking for a positive note here. Any promising research on the horizon beyond what we’ve already talked about especially even like clinical trials? Because it may be a bit much to ask at this point whether, you know, there could ever be a cure for something like Alzheimer’s. But I know researchers are working very hard at Penn State Health and beyond. So are you optimistic about the future of Alzheimer’s and dementia treatment in general?

Dr. Chen Zhao – I am. I think certainly the fact that we have one drug approved, of course, like I mentioned, there are some caveats with that particular drug approval. But, in any event, it is the first drug that has been approved in quite some time. And even if this drug ultimately turns out to not be efficacious, we are still learning from each success and each failure. And I do believe with dementia research, a lot of — sorry, involved in research, myself included, that with all our efforts, I am hopeful that within our lifetime we will develop a true treatment, a disease-modifying treatment for Alzheimer’s disease and other types of dementia.

Scott Gilbert – Dr. Chen Zhao, this information has been tremendous. Thank you for your time over the last half hour. We really appreciate it. And thank you very much for watching Ask Us Anything About Dementia from Penn State Health.

Dr. Chen Zhao – Thanks, Scott.