Disability and Progress-March 14, 2024- Alzheimer's

[00:00:00] Speaker A: KPI. [00:00:58] Speaker B: And good evening. Thank you for joining disability and progress on this March 14, 2024th episode. My name is Sam. I'm the host and producer of this show. Thank you so much for tuning in. Charlene Doll is my research and PR person who is sort of under the weather today. Hi, Charlene. I'm here. All right. Well, I hope you feel better soon and kick back and enjoy your Jacuzzi or whatever you got sitting around there. So thank you so much for tuning in. And I want to remind people a couple of things. First of all, that we have podcasts. If you want to join us on the podcast, we also are archived for two weeks after the episode airs. And you can join us and hear what's coming up next by emailing me at [email protected]. Thanks for tuning in tonight. We have Dr. Joseph Gogler. Good evening, Dr. Gogler. [00:02:04] Speaker A: Hi. How are you? [00:02:05] Speaker B: Thank you so much for tuning in and being here. Dr. Gogler is director of the University of Minnesota center for Healthy Aging and Innovations, correct? [00:02:15] Speaker A: That is correct. Thanks. [00:02:16] Speaker B: And a whole lot more, I'm sure. And so he's with us tonight to talk about dementia and Alzheimer's. What do we know about it now? Has anything changed? So we're going to be talking a lot about that. But can you give me a little bit of history on you first? [00:02:33] Speaker A: Sure. Well, really appreciate the opportunity to be here tonight. I'm Joe Gogler, been at the University of Minnesota now for, oh, my. It's going to be 19 years this July. [00:02:47] Speaker B: Congratulations. [00:02:48] Speaker A: Thank you. Yes. Great. A real honor to be here, be part of the University of Minnesota. I'm from Minnesota originally. I was in the school of nursing for around 13 years when I first came back here to the University of Minnesota as a faculty member. And in 2018, I had the opportunity to move over to the School of public Health to reinvigorate what was the center on aging and is now called the center for Healthy Aging and Innovation. And then also to continue on with really the work that I've been doing for the past couple of decades now, which is really focused on dementia care innovation. How can we best care for people living with dementia, those families or other individuals who are caring for people living with dementia? And what are some strategies and solutions that, number one, can benefit their lives? And secondly, and perhaps most importantly, how can we scale those innovations so that they can benefit the most people who could use them? And so, again, it's been a wonderful journey up to this point. And it's a journey that's ongoing and rapidly changing, it's exciting, can be also very challenging, certainly when hearing the stories of people living with dementia and their families. But I'm also amazed every day at what families and other loved ones do to help assist and care for people living with dementia in each and every one of our communities. [00:04:15] Speaker B: And we got the baby boomers coming up. There you go. It's going to be a huge population of people that will be aging, and I don't remember the number, but x amount of people will have a disability at some time in their life. So I want to start out by asking you to give us an idea of. Because you hear dementia and Alzheimer's used almost interchangeably, it seems, by the layperson, and so can you give us a little bit of difference? What is the difference between dementia and Alzheimer's? [00:04:55] Speaker A: Yeah, that's a great question, and it's an essential one. So it's important to remember dementia itself is not a disease. It really is a cluster or group of symptoms often focused on or oriented around challenges with thinking, with memory. And in the case of dementia, those changes impair one's ability to function independently. That's really, in a fairly gross definition, that's what dementia is. And it's important to remember there are various causes of dementia. Alzheimer's disease is one cause of dementia. It's the most prominent, most common cause of dementia. Roughly 60% to 70% of all cases of dementia are thought to be caused by Alzheimer's disease. But again, how dementia is different from Alzheimer's? Number one, Alzheimer's is a cause of dementia. Number two, Alzheimer's itself is a disease. It's a disease pathology. I'm sure people are familiar, they may have heard the terms plaques and tangles used when describing Alzheimer's, and those, essentially are the two neuropathological hallmarks of the disease. Essentially amyloid protein deposits that accumulate outside of the brain cells or the neurons, and then what are called neurofibrillary tangles, where essentially the structures within the neurons shrivel up and appear as such, as tangles underneath a microscope. So those are the two neuropathological indicators of Alzheimer's disease, and those are what are thought to be the biological causes of number one, Alzheimer's, which then results in these cluster of symptoms we call dementia. [00:06:33] Speaker B: So there are other types, though, right? It's not just Alzheimer's that people get. As you said, there's symptoms, but there's other types of. What would you call them? [00:06:48] Speaker A: Yeah, there are other forms of dementia. And as our diagnostic techniques have become more refined. These other types of dementia have been diagnosed perhaps more frequently than they have in the past. A couple of examples would be frontal temporal dementia, which essentially affects the frontal lobes of the brain. And the symptoms of frontal temporal dementia make it a type of dementia. It's very challenging to care for someone who's living with FTD, where changes in mood, in behavior inhibition are rapid and in some cases, very severe. And so that's one other potential cause of dementia. Another is lewy body dementia. The classic symptoms. Yes. Right. And the classic symptoms of lewy body. It really shares some symptomatology or presentation of symptoms with Parkinson's disease, where there's motor rigidity and tremors, and then also hallucinations tend to be a very common symptom of Lewy bodies, and that's another type of dementia. One thing that makes, I think, the whole study of Alzheimer's and dementia fascinating is also it is becoming evident that when individuals die with Alzheimer's disease, so they're diagnosed with Alzheimer's disease while they're alive, and then an analysis of the brain tissue occurs after someone passes away, and anywhere from 50% to 70% of cases I read recently have what is called mixed pathology, where there's clearly Alzheimer's disease pathology in the brain after someone passes away. But then there also appears another form of dementia that also seems to be adversely affecting the brain and neurological function. It could be vascular dementia, for example, strokes or lesions in the brain, or some of these other types of dementia that appear to be co occurring with Alzheimer's disease. So this, number one, makes the disease incredibly fascinating to study, in that it is such a complex pathway to dementia symptoms that we see while someone is alive. But at the same time, I would also argue it is what makes the treatment of Alzheimer's disease so challenging, when you have really complex pathologies, co occurring pathologies that may be happening in a brain at any given time for people. [00:09:03] Speaker B: How many other types of dementia are there? [00:09:06] Speaker A: There are quite a few. The most prominent, most common forms. Setting aside mixed pathology, mixed dementia, again, Alzheimer's disease is the most common, roughly 60% to 70% of cases. Then that's followed by vascular dementia, which, again, is. Again, we may commonly know that as stroke or other problems in terms of heart function, that then affects brain function. Roughly 20, maybe 25% of cases of dementia are vascular dementia. Then there's lewy body and frontal temporal dementia. And then the rest of causes of dementia tend to be a group of others that are less common for example, Corsicov syndrome, which is brought on by very, very severe alcohol intake over the life course, Parkinson's disease. And there are others as well. [00:10:00] Speaker B: So let's talk about early signs and symptoms of Alzheimer's. What are they? [00:10:07] Speaker A: Yeah. One of the most helpful pieces of information that the association provides, and I encourage anyone to go to the Alzheimer's association website, alz.org. You can also get connected to our wonderful local regional office, the Minnesota North Dakota Alzheimer's association office. And all of these Alzheimer's association resource pages will include what are called the ten warning signs of Alzheimer's disease. And one thing that's really important to note, and traditionally, people have always conflated old age with Alzheimer's disease. Some of us have been around long enough to remember terms used, such as Alzheimer's disease or senile dementia. I mean, these really aren't terms that are used clinically anymore, but more or less were utilized to suggest that Alzheimer's and dementia is just a natural result of aging. But in fact, it's very important to note that the changes that occur with Alzheimer's disease are different. I mean, it is certainly a disease. It's not a normal part of aging, right? And when one thinks and considers some of the warning signs of Alzheimer's disease, and there's ten of them, I hate to say this, I don't remember those ten warning signs off the top of my head. But essentially what they all have in common is this is as we get older, we'll forget things. We may forget where we put our keys. In some cases, we may forget where we parked if we park in a multilevel ramp. I mean, that happens to many of us. But eventually we can trace our steps or utilize strategies to recall that information at some point in time, later. Got you. In Alzheimer's disease, one does not recall that information. It is forgotten, and it can cause a great deal of distress for someone living with dementia as well as others caring for them. And it is definitely a different set of challenges when compared to memory changes with normal aging. I kind of liken it to if we think of cognition and aging, memory and aging as a chain with links in it, as we get older, the chain rusts, but the links still hold together. Our memory still can function. Maybe not as well as it did before, but it still can. With Alzheimer's disease and warning signs of Alzheimer's disease, the links of the chain start to fall off, and that then becomes a problem and a problem that should be followed upon in terms of getting a diagnosis and all of the other steps related to optimal dementia care. [00:12:40] Speaker B: And do people realize that they're slipping? [00:12:45] Speaker A: Yes, they do. I'll give an example. One of the things I've been doing as part of this, in my role currently at the University of Minnesota, is my goal is to visit every county in Minnesota to really engage in community conversations around dementia, dementia care with Minnesotans, but then also to provide basic information, up to date findings that are, of course, translated so they're usable and understandable to Minnesotans as well. And just this past week, I was in Jackson, Minnesota, and I was giving a presentation at the Jackson County Library in Jackson, Minnesota. And a woman there raised her hand and know quite openly and courageously. She said, I have memory problems. I'm having challenges. But when I tell my doctor this, he just tells me it's a normal part of aging and I don't know what to do. And these things come up over and over again as I've traveled throughout Minnesota. Now, granted, I got a long way to go. There's 87 counties in Minnesota. I think I've been to around 22 or 23 thus far. So I'm making progress, but I got ways. But when I have these conversations, it's evident to me that there still are major gaps in understanding of, one, the importance of assessing someone's brain health. [00:14:00] Speaker B: Right. [00:14:00] Speaker A: And number two, if there is a potential issue identified, to try to refer those individuals to the right type of specialist so they can really determine what is the cause of their dementia, is it Alzheimer's? Is it something else? And that can't really be done by a primary care provider. It is ideally done by a neurologist or some other specialist. Now, that is the ideal, the idyllic approach in terms of identifying whether one has Alzheimer's or not. But there are many structural challenges to that. Know, I would be remiss if I didn't mention, we know, for example, in many memory care clinics in Minnesota, particularly when one starts moving out into the rural areas, the waitlists are obscenely long. I mean, they're months and months for people. So there are long gaps of time where people might know they have a problem, maybe have been assessed by, say, a primary care provider. Know, you may have probable dementia here. We probably need to have you work through the full diagnostic workup to determine what's going on. You start having these months of time in these gaps, and I always am worried that what are people doing? Are they being connected to services and information during these points of time? And unfortunately, I think the answer often is no. [00:15:11] Speaker B: I'm wondering, are there risk factors that might increase likelihood of dementia or Alzheimer's developing? [00:15:21] Speaker A: Yeah, there's been a lot of attention to what are the potential risk factors for Alzheimer's? And perhaps more importantly, is there anything we can do about those risk factors? So, a couple of years ago, a very important study came out in a very prominent medical journal called the Lancet. It was an international team of researchers, and their goal was to essentially summarize all of the existing research literature and synthesize all of the findings related to prevention of dementia. And they came up with this very now highly cited figure where it basically shows, it almost looks like a river, if you look at the figure, and that river is essentially the life course. So from early life to late life, what are the risk factors that have been identified that contribute to the risk of dementia? One of the main findings from this study, this very ambitious study, was roughly, it was thought 40% of the risk of dementia is thought to be modifiable, which is fairly significant. It is, isn't it? So what can we do, really, throughout life? And I think it's important to emphasize throughout life, because it really suggests the need for a real public health strategy to brain health. I mean, how do we maintain our brain health? I know many of us, when we've gone to school, I don't recall ever being taught anything about brain health. Essentially, it was health of other things, other parts of the body. But the brain itself was never really a focus. And you could argue that, in fact, maybe it should be the primary focus. When we think of our life and quality brain, what do you have exactly. So what are some of the risk factors? I'm going to start with some that aren't as modifiable, unfortunately. So we start with age. Now, again, remember, risk factors are not causal, so it's a risk factor that contributes to your risk of potentially getting dementia. But nonetheless, we know that roughly, for those over the age of 65, roughly twelve to 13% are thought to have Alzheimer's disease or related dementia. That number jumps up to around 32% for those 85 years of age and over. So there's definitely a risk factor with that, and it's not necessarily a modifiable factor. There are some indicators that family history may be associated with dementia risk and some genes as well. Most prominently, it's called the apoe four gene. If one inherits a certain type of apoe four, one's risk is elevated, too. But again, that's in a fairly small percentage of Alzheimer's disease cases. There are several others, but then we start focusing on those risk factors that, in fact are somewhat modifiable in different ways. A cluster of risk factors really focus on cardiovascular health, and I think it makes sense if you think about it, the brain relies heavily on the heart to function properly and effectively. And if one has hypertension, if one has other problems related to heart function, it could be diabetes, obesity, other types of issues. Those have all been linked to later life dementia risk. There are some other risk factors that are pretty interesting as well, and they're gaining more and more traction in the literature. One is hearing loss in midlife. And you would think, well, what does hearing loss have to do with brain health? But if you think about it, one thing we know is, like many aspects of our body, it is somewhat use it or lose it. With the brain remaining cognitively stimulated throughout the lifespan is important, and it is one way, is one strategy to contribute to brain health. If one has hearing loss and doesn't address it and doesn't manage it, one doesn't really have that opportunity to fully engage with their environment, socially or otherwise. And that certainly can have an impact, perhaps a long term impact, on brain function. So that's another potential risk factor as well, another really interesting one. And I always think back to the pandemic as a very tragic experiment that emphasized the importance of social connection to health. We know loneliness is linked with a number of adverse health outcomes, expedited mortality, a number of other chronic health issues, and among them is dementia. And there have been studies suggesting that if one has depression and it's not managed effectively, that is also linked to dementia risk, alongside social isolation as well. So when one takes stock of all of this panoply of risk factors, what can we do about Alzheimer's disease? And I don't think it takes an expert to realize this. It's more about are we willing to do it, and how can we encourage others to do it in an appropriate way? So, first and foremost, of course, is diet, a diet that emphasizes potentially brain healthy foods. Many people consider the Mediterranean diet one example of a brain healthy diet, but I think it's important for us to remember when we're talking about healthy diet is we have to consider different, say, indigenous or culturally appropriate diets as well. That may also contribute to brain health. That actually is an area, I think, that could use a lot more research and explanation and explication. And the reason why I say that is, if you recall what I had just mentioned, these are all things we probably know we need to do for ourselves. And whether we do it or not consistently is another question. But when I think about, again, a public health strategy. What can we do to get the message out? To have healthy brains? One way to do that is to ensure our messaging is tailored to different communities and such. And I think when we're talking about diet, that's one example where that would be very important. On top of that is, of course, exercise, moderate exercise, anywhere from three to five days, five times a week, not a day, three to five times a week, roughly around 20 to 30 minutes a day. That exercise should range from aerobic exercise, but then also including flexibility and some strength training, within reason. And the latter two are really important in part because of how they can protect against injurious falls. Exactly. And then the last strategy is really focused on social and cognitive engagement, trying to remain socially engaged. And as I had mentioned, we know why and how that is so important to our overall health and well being, and then remaining cognitively engaged, too. And when I say cognitively engaged, there are many, many ways to do this. I don't think there's one specific way. Some of us, like crosswords or wordle or chess or those types of games, certainly reading, trying to learn a new language. I would also argue arts and music, musical and creativity. We know that there certainly are links between that and brain health. So I think all of these things together are all strategies we can take that can contribute to a brain healthy lifestyle. [00:22:10] Speaker B: I wonder if you could talk a little bit about a while back, there was a lot on concussions, and I'd like to add in as far as that chemo as well, from people who have. Can you touch on, have either of those? How does that affect the brain? [00:22:27] Speaker A: Yeah, that's a great question. TBI, traumatic brain injuries are considered a risk factor for dementia. Now, the obvious follow up question is, well, if I've had three concussions earlier in life, am I going to get dementia? I don't know if I can give a good answer to that. It seems like if one has had serious brain insults earlier in life, say, through a car accident, say, through a contact sport, where it's happened multiple times, that certainly appears to be a risk factor for dementia. Chemo has certainly, we've heard, you hear the term chemo brain, and certainly post chemo, where there might be some impairments in cognition that has not emerged as a consistent risk factor to long term dementia risk. But I will say this, and I think it's important to emphasize my mentor, Bob Kane, who's a world renowned geriatrician at the University of Minnesota. He was a mentor of mine and then a colleague. And I actually was very lucky enough to assume his position after he passed away in untimely fashion in 2017. I always remember something he told me. He always said, absence of evidence doesn't mean evidence of absence. And what I want to emphasize is there may be many other risk factors we don't know yet that could very well emerge depending on available research that seems to suggest contributions to dementia risk. Good example is a couple years ago, or maybe as recently as last year, I saw a really interesting study that came out of Sweden, very large epidemiological study. So they followed a lot of people over many years, and they actually linked ADHD with dementia risk. So that's an example of that could be a really promising risk factor. Well, I don't want to use the word promising concerning risk factor to perhaps replicate and identify consistently in the literature, generally, in terms of that initial list of risk factors I provided, once studies show consistently a certain set of risk factors, then that risk factor list gets updated as well. [00:24:27] Speaker B: Yes. I wonder, is there a difference between how fast does Alzheimer's generally progress? Is there a timeline? [00:24:42] Speaker A: It varies widely within individuals. And again, this is what makes it such a fascinating disease to study. One study that actually started in Minnesota, and it was a very famous study, it's almost 30 years old now. It was called the Dunn study, and a whole book came out about this. And the nun study, main investigator, his name was David Snowden. He was actually in the division of epidemiology here at the University of Minnesota before moving on to the University of Kentucky. And he actually collaborated with the school sisters of had. And I think he worked with four different convent sites around the US. One of them was right outside Mankato, Minnesota, and a couple other places across the these. What was so fascinating about the study is the nuns who participated basically committed their bodies to the study of Alzheimer's, meaning that Dr. Snowden and his team would assess these nuns periodically and regularly while they were alive. And after they passed away, the nuns donated their brains to Dr. Snowden's team so he could further study them. And one of the most fascinating findings that came out of the nuns study was this. There were many instances of nuns when, while they were alive, they performed very well on all of the tests, the batteries. They seemed to be performing well in terms of cognition, memory, et cetera. But then after they passed away and their brains were analyzed, there actually was evidence that they had the neuropathological hallmarks of Alzheimer's, they had amyloid plaques and tangles. So what that says is even though we understand plaques and tangles as kind of the biological indicator or perhaps cause of Alzheimer's disease, for many of us, whether we have cognitive reserve or other factors we rely upon, it doesn't necessarily mean that we will present those symptoms while we're alive. And it's kind of a long way. To answer your question, I could have easily said, well, it just depends. But in reality, what it's showing us is, for whatever reason, some of us might have certain cognitive reserve, other types of resources that can help stave off the effects of Alzheimer's. In terms of what we know in the research literature, from point of diagnosis to Alzheimer's to death, on average, people live around six to eight years. However, one thing we also know is for those that do receive a diagnosis of Alzheimer's, it still tends to be fairly late in the disease course. I think many of us know people who have been living with dementia. I have talked to many families and others who say the same thing. Some families been caring for their loved one with dementia 1015, sometimes 20 years or more. [00:27:16] Speaker B: So if somebody suspects that they're having issues, what should they look for and then how are they diagnosed? [00:27:28] Speaker A: Yeah, I think we had talked a little bit about the warning signs, and again, if one has a warning sign and there's ten of them, they range from things like maybe forgetting orientation issues, or maybe misplacing things and not remembering where they're at. If these things become more consistent, the first step really is to probably try to have that conversation with the primary care provider to do a really brief cognitive assessment. Now, the cognitive assessment may ascertain whether someone has potential dementia. It won't say what the cause is. And the next step then is to get a referral from a primary care provider to a specialist, ideally a neurologist, or there are other specialists who can do then a full diagnostic workup. The diagnostic workup is fairly intense. It takes a fair amount of time. It still focuses on primarily trying to rule out other potential causes of an individual's dementia. Until the specialist feels confident that what we're seeing here is Alzheimer's disease, a standard diagnosis will include things like a family history, interviews with what are called proxies, often family members, to get a sense of the history of changes that have occurred. Number of tests, batteries of neuropsychological tests that can take some time. Then certainly brain scans, for example, PET scans, where the technology has evolved to the point where one can take a PET scan and one can look at a cross section of the brain to see if there is actual potential presence of amyloid plaque in different areas of the brain. All this information is collated together by specialists to kind of give a sense of. We are fairly confident that what we're seeing here is Alzheimer's disease and not some other cause of dementia. [00:29:18] Speaker B: That can be hard to, presumably, because there are people who just are not close with their families. So the family history may not be there. [00:29:27] Speaker A: That may not be there. And then certainly there is a great deal for, I think, reasons we can all understand. There's a great deal of fear and stigma on the part of number one, if you are an individual and you can kind of see yourself having some of these issues, are you likely going to really bring this up with a primary care provider? [00:29:49] Speaker B: The primary care provider going to listen? [00:29:52] Speaker A: Exactly. And so the flip side is, and again, this is not a criticism of primary care providers. I mean, they have very challenging jobs, really within the context of a 15 minutes visit oftentimes. And so if someone is visiting the doctor and they may have a knee problem or heart problem or something else, is brain health necessarily going to be at the top of mind to assess and monitor over time, particularly if the patient isn't bringing it up? And for many primary care providers, there may be a reluctance to do a memory test or even a brief cognitive screen. When there's a feeling that, well, I do that, then what? What do I do next? And so it's a challenging process, both on the part of patients families and then healthcare systems themselves. Unless healthcare systems are set up in such a way to provide holistic care for someone living with dementia, it can be very challenging for people living with dementia and their families to navigate the health care system. [00:30:52] Speaker B: I wonder if you have any advice for families. One of the things, what we did talk about here is that how important that individuals stay kind of maintain social connections and engagements. So how somebody's been diagnosed, what should they do? [00:31:15] Speaker A: I personally think there are probably two resources that families should reach out to. The first is the Alzheimer's association. There's a 1800 number, and I apologize. I should have been prepared to bring that number for everybody. But if one goes to alz.org, you can find that 1800 number. That number will connect you to the Minnesota North Dakota chapter, where then you can get connected with a wide range of services and supports and information that every Alzheimer's association chapter provides. Secondly, the other resource that, again, is available to all of us throughout the state of Minnesota is our local area agency on aging. There's something called the senior linkage line. Again, if you google it, you'll find another one, eight. I believe it's a 1800 or one eight, eight number. And again, that number will connect you to your local area agency on aging, where you can find out about additional resources between the Alzheimer's association and your local area agency on aging. You can find out about, for example, the local senior center, whether there are adult day programs in your area. Are there home health agencies that might be appropriate? What are some other community supports out there that one could take advantage of? Unfortunately, until the type of care that's needed, the optimal care that's needed for people living with dementia is readily available. It often falls on families or someone else. Sometimes the person living with dementia may be, too, to kind of seek out and identify these local resources and supports to more or less put together their own little care ecosystem, if that makes sense, in order to stay at home and to live as high quality life as possible. [00:32:54] Speaker B: One of the things the terms has always kind of perplexed me was the term amyloid. Can you try to give us an explanation of what is that and what does it do? [00:33:06] Speaker A: Right. I'm going to do my best. I'm not a neurologist, so if I'm somewhat incorrect to the audience, my apologies. If there are neurologists out there, there could be. Essentially, amyloid is a protein. It is considered a toxic protein. It is a protein, again, that accumulates in the brain and is thought to be one of, again, the driving factors that results in what we now consider Alzheimer's disease. It is essentially a protein that is synthesized in an abnormal way. It can cross the blood brain barrier and accumulates in our brains and apparently, and is considered toxic to normal brain function. So why amyloid is so important is it's really been the focus of emerging therapeutics in Alzheimer's disease. The thought is if we can, for example, build up the body's immune system to clean out amyloid plaque in our brains, the thought is that will result in improved outcomes and potentially, at the very least, if not curing Alzheimer's, which we're not at that point yet, at least slowing the rate of decline, the progressive rate of decline in Alzheimer's disease. And for those of us that have been familiar with some recent media reports, there have been a new wave of therapeutics that have really ushered in a new era of Alzheimer's treatment. The first of these was called Agihelm, which was approved by the FDA I believe it was in 2022, if memory serves correctly. Not without controversy. I don't know if we have time to get into that. But essentially what this treatment does is, again, it essentially helps the body reduce amyloid plaque formation in the brain. It is not a drug. It is actually an infusion therapy. I hesitate to say this, but it's almost kind of like chemo, in that if one receives Agihelm, and now its successor drug called lacanumab, which was approved by the FDA in early 2023, one will have to go to, essentially, an infusion center and periodically receive these infusions in order for the treatment to take hold and to work. So at one level, it is very exciting. I mean, all of this research and science that has been done, really trying to focus on the neuropathological processes of Alzheimer's, has finally gotten us to the point of maybe we have a set of viable treatments that really targets what we, or at least some of us, believe, is the driving factor of Alzheimer's disease. That also comes with certain costs. [00:35:56] Speaker B: I'll touch that in a minute. [00:35:57] Speaker A: Okay, so I'll wait. [00:36:00] Speaker B: So let's dive in a little deeper here, because these medications, or infusions, if you want to call them, were really exciting and a lot of media hype. Do they work? And in what percentage of people who have Alzheimer's or dementia do they work in? [00:36:22] Speaker A: Right, so these therapies do seem to reduce amyloid plaque formation. It seems fairly consistent, and I think we can say with some degree of confidence that's happening. What is less clear, this was the case with Agihelm, and I would argue, even with lacanumab as well, because the trials that actually evaluated lacanumab were only for an 18 month period. And as you've just heard us discuss, I mean, Alzheimer's disease lasts a lot longer. So what we don't know, number one, do these therapies work over long periods of time? Two, and there's some suggestion of this. There's actually a third therapy that's at the threshold of FDA approval, and that approval actually was stopped just last week. I mean, this was hot off the press just last week, in part, and I would argue it's kind of for a good reason, is because there was some indication that people who took this third amyloid plaque fighting infusion, essentially, it appeared that they didn't have to take it for long periods of time or multiple sessions to still get benefit from it. And that's very important, because the other thing with these therapeutics is there is risk for really, what are called amyloid. It's called ARIA is the acronym. It's amyloid related imaging abnormalities, I think is what the. Again, I apologize to those of you that got it wrong, but it includes things like brain bleed and other types of problems and issues that, in fact, obviously are very, very concerning and sometimes can cause really adverse health outcomes if it occurs. And in Aguhelm, it occurred in a significant percentage of participants to the point where Agahelm, now the FDA, I believe, has discontinued it, or actually the maker of the drug, has discontinued Agahelm. Lacanumab, the successor, appears to be less harmful to patients who receive these infusions, but yet there's still a risk for that as well. And we don't know if someone is taking it over long periods of time. Do those risks for Aria go up? Do they go down? I mean, we just don't know. [00:38:34] Speaker B: So one of the things I want to ask is, obviously, I don't know because I don't have dementia yet. What did I just say? [00:38:44] Speaker A: Yeah, sorry. [00:38:47] Speaker B: Are the risks worth it? And number two, I wonder if, at what point does a person get offered this? [00:38:59] Speaker A: You are, again, these are developments, literally, that have occurred over the past couple of weeks. So this is a timely conversation. There was a great article that came out in the New York Times. I believe it was last week that the Alzheimer's association and the National Institute on Aging, they had convened a work group, essentially, and I believe this is FDA approved, if not already. We are at the point where a blood test can be administered and one can know if they have amyloid platformation in the brain. [00:39:33] Speaker B: And then to me, the question begs, would you get that test? [00:39:38] Speaker A: Well, this is a great question, and I ask this of all of my audiences when I do my talks, and it's even more relevant now. Before, it was kind of hypothetical. It's not so hypothetical anymore. I would say, generally, half of all audience members, that when I give up my talk on Alzheimer's, the basics, they'll raise their hand. The other half don't. And I personally, I don't know if there's a right or wrong answer to that question. What would be some personal. It's very personal. [00:40:05] Speaker B: I mean, do you want to know what you're in for? Basically. [00:40:08] Speaker A: Right. And again, as you heard earlier, can we say with any degree of full confidence that if you have amyloid plaque formation in the brain, doesn't mean you're going to live with Alzheimer's? Like the symptoms, the memory problems, all of that, clearly amyloid plaque accumulation is more than likely a pretty important risk factor. But whether it is something that kind of is basically causal to the symptoms of Alzheimer's, to me, is much, much less clear. So, again, getting back to this idea of, okay, would I get the blood test? Do I want to know? So what are some of the upsides for wanting to know? I mean, some of the upsides might be, well, it may help me plan. And one can't take that lightly, because in many instances, when one gets Alzheimer's disease and if one doesn't have affairs in order, legal, financial, or whatnot, you lose the ability to make those decisions and have control over that. And I think for many of us, we want to have control over those types of decisions. So that might be one pro, but then you flip it over. What are some of the cons? A con might be, I'd be real curious to know, if one is screened for having amyloid plaque formation, what will that do to your insurance? [00:41:19] Speaker B: That was going to be my question. [00:41:20] Speaker A: Probably not. It won't be insurance, right? It will not be positive. I would imagine there could also be ramifications for employment and other types of things that we value as well. So, to me, it is less about a right or wrong answer, and it's more about ethics. It's ethics and really informed decision making. Do we give all of the information necessary for people to make the decision that's best for them? For some, it may be a really important thing to know, for whatever reasons. For others, a screen may not be beneficial at all. And on top of that, again, there's this kind of underlying thinking from some segments of the Alzheimer's scientific expert community that if someone is screened and they have amyloid plaque formation, we can put them on these new therapeutics. I almost feel like that's one side of the narrative, but there's a whole other side of the narrative. Many geriatricians, for example, believe this. I happen to be in this camp as well, which is, it is not in any way clear to us that getting someone on these therapeutics immediately necessarily is a good thing or a cost effective thing or beneficial in terms of one's quality of life. We just need to know a lot more so families and healthcare providers can. [00:42:36] Speaker B: Make the right, as when we talked about this, I mean, it's my understanding that the therapeutics have a pretty high risk factor. [00:42:46] Speaker A: They do. Aguhelm. The first version of this infusion therapy approach that was FDA approved did have a fairly high risk factor. Lacanumab appears to be less so, but it is not insignificant. I don't have the percentages. Off the top of my know. At the end of our conversation here, I can give out our contact information. We actually developed an FAQ sheet for families on lacanumab, and we include a lot of the information about how often one would take it, who it was tested on originally, and then also something we haven't talked about is cost. [00:43:17] Speaker B: Cost indeed. So I presume the cost is rather steep. And at what point does somebody go on? Can they go on at any time of. I presume that earlier is better. [00:43:29] Speaker A: That is the thought. And when it was tested, it focused on those individuals who had what are called early stage Alzheimer's dementia or mild cognitive impairment, which is recognizable changes in memory and cognition, but not to the point of dementia where someone can no longer function as well independently without help, for example. But the price tag for lacanumab, from my understanding, is roughly $27,000 a year, $26,500 now because FDA approved it. And the Centers for Medicare and Medicaid Services also offered approval. If one is on normal Medicare, most of those costs will be covered by Medicare up until roughly a 20% copay, which still is not insignificant. That's still around 5000, maybe $6,000 for people, and that is not trivial. The other thing too is for individuals who live in states that have or on a Medicare Advantage plan, it remains unclear how much those advantage plans are going to actually cover for the cost. And in Minnesota, I think I forgot what the market penetration of Medicare advantage plans are in the state. But it's high. It might be something like 80 85%. So these are issues that remain unclear. But these are, again, important factors to consider when we're thinking about is this therapeutic the right choice? [00:44:54] Speaker B: I presume there are always studies going on that one can get into. How would one find a study? [00:45:00] Speaker A: The best place, I think, to look for a study is the Alzheimer's association. If one goes on their website, they have a program called trial match, and you can actually search there by type of dementia, for example, Alzheimer's disease or mild cognitive impairment. And then you can also search by location and what trial match will do. Well, then it will generate a list of studies that you can see if you're interested in participating in. Some of these might be focused on therapies. Some of these might be non pharmacological therapies. A good example is much of our research focuses really on caregiving support, kind of these non pharmacological approaches. And oftentimes we'll list our studies in trial match, because that might be something that people might be interested in participating in. The other place to go, it's a little less user friendly is clinicaltrials. Gov. That is the federal website that lists all studies that are clinical trials in the US. And again, that's searchable by condition and location. But I would recommend starting with trial match at the Alzheimer's association. That's far more user friendly. [00:46:00] Speaker B: And just so people understand, if you tuned in and heard us talking about these drugs, they are not a cure, they are a slowdown of progression. [00:46:09] Speaker A: Yeah, that is definitely the way to think of it. The other thing to remember. And again, I'm somewhat frustrated that this doesn't seem to come out in the narrative as much as it should. There's some who believe amyloid plaque. If these infusion therapies stop or reduce amyloid plaque formation in a way, that's success. But what we don't know with these infusion therapies consistently is, are they helping people in terms of their behavior? Are they helping people in terms of their function, their quality of life? Really, the measures, really, they may be, quote unquote subjective, but they're the measures that I think we care about the most. I mean, it's great if you can clean out amyloid plaque out of my brain. If I'm still not able to walk up and down the stairs or get out of bed easily without help, who cares? I mean, that's just me speaking this, and maybe I'm being a little too down to earth. [00:47:07] Speaker B: A lot of people on your base. [00:47:09] Speaker A: Yeah. And so to me, that is what we need to know, because in the end, when you talk to families, when you talk to people living with dementia, those are the things they care about the most, right. [00:47:17] Speaker B: Can they interact with their family, their children? [00:47:21] Speaker A: For people living with dementia, a big thing for them is I don't want to be a burden on my family, so. Well, okay, do these new infusions, do they help people living with dementia have greater function or maintain function to the extent where they don't have to rely on others to help them with things we don't know? [00:47:39] Speaker B: We talked briefly about things that can help people keep their brains strong. Exercise, diet, learning, an instrument, a language, social interaction. Are these part of the plan to help? Do they protect you against dementia? Or is it just. [00:48:00] Speaker A: It is thought that by doing this combination of really various lifestyle behaviors that it can potentially build, for example, a cognitive reserve, an ability for us to fight off the neuropathological ravages of Alzheimer's disease. And in fact, these aren't just simply do this because we think it works. I mean, there have been several studies, some in Europe and now in the US. I think the big study in the US is called the Pointer study, where they actually are studying the effects of a combination of social engagement, diet and moderate exercise together as really this lifestyle intervention strategy to reduce dementia risk. There were some very promising results in, I believe it was the Netherlands, the study there was called the finger study. It was a smaller study, but nonetheless it showed really promising results to the point where US investigators are now replicating that with Alzheimer's association support in multiple sites. And I eagerly await the full findings from that particular study because it'd be pretty interesting. [00:49:05] Speaker B: What should families consider when planning the long term care of a loved one with dementia or Alzheimer's? [00:49:16] Speaker A: I think the big thing to consider first and foremost is, number one, what is the relative, the care recipient, whether that's someone living with dementia or not, what is their desire and what steps can be taken if they're still living at home, to help them stay at home for as long as possible? I think for all of us, I mean, there's always an exception, but I think for most of us, we would want to remain at home. We wouldn't want to go to a residential care setting unless we had to. And again, this is where connecting with community resources, the Alzheimer's association, the air agencies on aging local, can give one a sense of are there programs and supports? Whether it's respite? Could be home modification, other types. Maybe it's an occupational therapist coming in, doing a home visit, determining if that home environment can, for example, be decluttered or simplified to help the person live there longer and more effectively. Have we done those types of things to ensure that our loved one can stay where they want to stay? That being said, and I certainly believe this, I think admitting a loved one, a parent, a partner to residential long term care is very challenging and it's very hard. But it's not always the wrong decision either. There may be instances where simply the person can't live safely at home anymore, for whatever reasons, they may be wandering, they may be falling, and no matter what you do, you can't make that environment safe. The next step then, if one does have to make that decision, is, again to avail themselves of resources to determine what is the quality of, say, some of the nursing homes I'm considering. Minnesota actually has a nursing home report card that is unique in the US that again, consumers can look at to get a sense of, is this local nursing home, does it have the amenities and does it have some of the quality ratings? That would make me comfortable in considering that for a place to go. Too often the decision to move someone into residential long term care doesn't take into account any of the quality factors. It's usually done, and it could be done in a very rushed situation, say right after hospital discharge. And oftentimes this kind of information is not conveyed. It's more along the lines of, here's an available bed, take it. Or in some cases, families might just pick the nursing home that's closest nearest to them. Again, these are all very challenging decisions, and if one has the ability to do so, it's obtain the information to make the most informed decision. [00:51:49] Speaker B: Well. And that being said, I think sometimes it's very financial based. [00:51:55] Speaker A: Yes. Well, that we can't ignore either. And that's always a challenge as well. And when finances become an issue, and if one is able to connecting again with a local area agency on aging to find out about any kind of legal planning or financial planning resources that one can take advantage of to help determine what can and should I do if I have to become eligible, for example, for Medicaid, what those steps are. And again, even if one can't, almost none of us can afford paying for nursing home care out of pocket. I mean, there are very few, I mean, roughly the cost for a nursing home on a monthly basis. I forgot what it is standard. It's probably well into the five figures now, and that's per month. I mean, not many of us can afford that. So again, many of us may have to avail ourselves of, say, public Medicaid support to pay for those types of. I mean, I still urge people, if one can find information about available residential long term care services and their quality, to do one's best, to pick the best possible place. And again, we're often constrained in what we can do, but still there are resources and information out there to try to at least make the best decision possible. And what is very a challenging decision. [00:53:17] Speaker B: Can you give us those websites again on how people can get family support and find out more about Alzheimer's and things like that? [00:53:26] Speaker A: Yeah, I mean, I would recommend, if anyone wants to connect with me directly, myself and my team. My research program is called the Families and long term care projects. And our team doesn't just do research. We do a lot of engagement and outreach and education, and we often will work with families if they have these types of questions, to connect them to some of the fairly sizable network of services. Now that we've come across over the years, the best way to reach us is to email me or not really email our team at fltc. That stands for families and long term care. Fltc at u mn.edu. [00:54:04] Speaker B: Can you give that once more? [00:54:05] Speaker A: Absolutely. Fltc at u mn.edu. And you know what? I'll give my office phone number too. I always love talking to families and connecting them. So my office number again, if I'm not there, just leave a message. 612-626-2485 and again, if I can't answer your question, I'll try to find someone who can. [00:54:26] Speaker B: Dr. Gagui, thank you so much for coming on. I really appreciate you have a wealth of knowledge, so we always appreciate that. And I love to talk about these new drugs and I think we'd love to have you back next year. I think there'll be some time then that these things will play out and you'll see some interesting. [00:54:46] Speaker A: Absolutely. Again, things are changing rapidly. When I say rapidly, it's on a day to day weekly basis. There are many other breakthroughs occurring, not just in infusions and therapies, but in how we think and pay for services. And I'd love to talk about that more if time permits. [00:55:00] Speaker B: Yes. Thank you so much. I really appreciate it. [00:55:03] Speaker A: Thank you for the opportunity. [00:55:05] Speaker B: If you enjoyed hearing this program and the information that we brought you remember, coming up in April is our pledge drive. We really depend on you for your support and to be able to bring unique programs like this for informational purposes and all sorts of things. Please remember us and give what you can. This has been disability and progress. We really appreciate your listenership and hopefully we will be back in another week or so and we will be bringing you more fascinating interviews. This is disability and progress, where we bring you insights into ideas about and discussions on disability topics. My name is Sam. I'm the host of this show. Thank you so much for tuning in. Charlene Doll is my research PR person and we've been speaking tonight with Dr. Joseph Gagler, sorry, director of the University of Minnesota center for Healthy Aging and Innovations. We were talking about dementia and Alzheimer's disease. If you want to hear more or have more suggestions, you can email me at [email protected] thanks so much for listening. Take care.