Marc Agronin, MD, Senior Vice President for Behavioral Health at Miami Jewish Health talks about Alzheimer’s disease and potential treatments.
Interview conducted by Ivanhoe Broadcast News in December 2018.
Let’s speak first about Alzheimer’s disease. We are hearing a lot more about it, what is the prevalence of Alzheimer’s disease in this country and are we expecting it to get better or worse?
Dr. Agronim: Alzheimer’s disease is the most common form of what we call dementia, which represents any brain disease that causes cognitive impairment. Today out of, say a hundred people who have some form of dementia, sixty to seventy percent of them will have Alzheimer’s disease. It’s at an epidemic level in our country now. Roughly five to six million Americans are suffering from Alzheimer’s disease, but you have to consider the fact that it is growing quickly. By age eighty five, almost fifty percent of the population has some degree of Alzheimer’s disease, and this is one of the fastest growing segments of the population so you do the math and you see that the numbers of individuals suffering from Alzheimer’s disease is increasing tremendously. We have some treatments for it but we don’t have a cure and so this speaks to the fact that we’re facing enormous challenge. There’s not a family that’s not touched in some way by this disease.
It does seem to be very far reaching and affecting so many people.
Dr. Agronim: There’s not a family in this country that’s not touched by this disease.
Are you seeing younger people showing signs and what are the signs and symptoms of Alzheimer’s?
Dr. Agronim: Well, Alzheimer’s disease can be deceptive when it starts because it often presents with short term memory deficits, and those deficits can have many different causes.
Let’s talk about some of the signs and symptoms of Alzheimer’s disease and then we can talk about it’s affecting younger people.
Dr. Agronim: Sure. Almost always, the first symptom of Alzheimer’s disease would be short term memory deficits. Now lots of people experience changes in their memory as they get older, most of us can describe those experiences. And for the vast majority of individuals, that’s not Alzheimer’s disease. So we look for more of a pattern where it’s not just short term memory changes, but we see changes over time in recognition of familiar places and people. Changes in language expression. Over time, Alzheimer’s disease affects the entire brain, and it may start with short term memory deficits, but inevitably we will see many other cognitive changes. This speaks to the importance of getting a really comprehensive evaluation by an expert because that’s really the only way to get a better sense for what could be going on. Sometimes, there can be medical conditions or other temporary factors like depression or sleep problems that can cause memory deficits, and there are other forms of dementia, it might not be Alzheimer’s disease. So it’s important to know that. Now in terms of the people we see with this. Now, the main risk factor is age so the older you get the higher the risk of getting Alzheimer’s disease. So, typically we see what we call lat onset Alzheimer’s disease. This begins after the age of sixty-five. I have to say that because we’re getting better with surveillance and with detection we are seeing more younger people. By that, I mean individuals in their fifties and sixties with Alzheimer’s disease, we call this early onset Alzheimer’s disease. This represents maybe five to ten percent of all cases, but it certainly is out there and it ’speaks to the importance evaluated quickly. I always emphasize that you would hate to have some reversible problem going on for years when you could stop it or slow it down in some way. But if you don’t do that the damage sometimes can become irreversible. So, early detection is so critically important.
What is happening to the brain in an Alzheimer’s patient? What are you seeing?
Dr. Agronim: If you were to look at a brain of Alzheimer’s disease you see that it’s shrunken, it’s lost so much of its architecture, cells are dying, and that’s on a large level. If you look at the level of the cell in the brain there are two distinct things we see. Two different toxic proteins are building up. One of them is called beta amyloid is building up outside of brain cells forming these little clumps of plaque that begin to damage the brain and cause inflammation. This inflammation, itself, is damaging. If you look inside brain cells you see these little tangles of a different toxic protein known as tau and this appears to be probably the most damaging cause of the disease. So it’s almost like a two punch process where you get beta amyloid starting to increase outside brain cells, tau begins to build up inside brain cells this damages and destroys cells, and it slowly but steadily begins to cause the symptoms that we describe as Alzheimer’s disease.
What are some things you might see in a patient with Alzheimer’s? Like agitation, talk a little bit about that. What you might be seeing in a loved one with Alzheimer’s.
Dr. Agronim: Sure. Alzheimer’s disease is a whole brain disease. It may begin in areas of the brain that primarily help to maintain short term memory. It begins there; it doesn’t end there. When you think about it, obviously your brain not only helps us to think, to express ourselves, to have good judgment and insight. Our brain also helps us to regulate our moods and behaviors. It’s those regions of the brain also become damaged as these toxic proteins spread throughout the brain we can see individuals who can have behavioral disturbances. May becoming agitated or on the flip side becoming very apathetic and just not having motivation to do anything. We see changes in mood; people get very reactive to situations, distressful situations. They get very anxious or sometimes depressed. And often, when I see people in my clinic as much as I am talking to them and helping to do something about the cognitive changes, always we are also helping them with changes in mood and behavior. And a lot of the studies focus on that as well because we’re trying to find better treatments to regulate these aspects of brain function as well.
This is where there is a source of frustration for the caregiver.
Dr. Agronim: Sure. Well when you think about it, if someone begins to lose memory they get disoriented when they’re out in public or trying to drive around, they lose function they’re not able to work at appliances, and this worsen over times they have to have someone helping them. Eventually, they need someone with them twenty four seven. So you can imagine this is an enormous responsibility often too much for an aging spouse or adult children who also have so many other responsibilities. So what we try to do at our memory center is provide as much support not only for the individual who has Alzheimer’s disease or some other form of dementia but especially for the caregiver as well. They need a tremendous amount of support. I add for some caregivers it’s difficult it’s a burden for many other caregivers they can find meaning even joy in being a caregiver because this is something that they love, and they’ve always been with for a long time they want to help, they want to be part of it but they need support. They need support from friends and from family and sometimes it’s hard to know what to do. But this is why we want to educate people about this disease that we’re not hiding it in the shadows, that we understand that for many people this is a part of their life, they’re living with this and we want to make certain they can have as full a life as possible.
What are you seeing now as far as treatments, the advancement, where we are today because for years we’ve been talking about drugs that halt the progression. But is there something available now or what are you seeing?
Dr. Agronim: Alzheimer’s disease is a progressive condition. It starts with mild symptoms; it eventually progresses where someone loses most of their cognitive abilities and most of their functions. We do not have a cure at this point in time. We don’t have a way to effectively slow down this disease. We try to treat symptoms, and there are right now four different medications on the market that are approved by the FDA to help improve symptoms modestly. I emphasize modestly they’re not cure alls, as far as we know they don’t really slow down the course of the disease, but they can bring improvement. I have to add there’s been a lot of research showing they can do that this is why they have FDA approval. There are so many other supplements and other tonics that people claim make a difference, but they really don’t have that evidence. It’s important for people to understand that, you know; if you’re going to implement a treatment, you would like to know there’s some scientific evidence to support it. However, we are busily working on research studies to find some way to slow down this disease and then cure it. One of the most active areas involves a form of immunotherapy where we actually try to get your body’s own immune system to try to identify attack and get rid of these toxic proteins in the brain. There’s no question that we’ve made progress it appears that maybe these treatments can slow the disease down but the question is are we slowing it down to the extent that it really makes a difference. And that’s still an open question. But this is why we need people to be in research studies.
And that is truly the importance. I know we’re going to touch on that.
Dr. Agronim: Programs that people use to try to train their brain and it’s unclear how much a difference they really make is terms of improving cognition especially with a progressive condition because it’s getting worse over time. But part of the goal is to at least try to improve cognition and to provide some wellness so they enjoy some of these games, puzzles, spending time with a brain trainer it’s fun for them. That’s as much of a part of this as anything. It gives them purpose.
You were mentioning the clinical trials so if you could talk a little bit about what’s going on here at Miami Jewish Health as far as clinical trials.
Dr. Agronim: In our memory center, we have about fifteen different clinical trials that we are running. The goal is to have a trial that can match any individual who walks in here. Some people have mild symptoms some people have more moderate symptoms. In some individuals, it’s less the symptoms of the disease directly and more of an issue of agitation. We have several studies to try to help with agitated behaviors to calm the person because it makes their daily life better, helps with their caregivers. We also are trying to implement some of these trials at the earliest stages in this disease. One thing that we’ve recognized is that the toxic proteins they can build up years if not decades before people actually have symptoms. Maybe by the time somebody walks in with symptoms of Alzheimer’s disease, we’re concerned that it may be too little too late because so much damage has already occurred to the brain. The key thing is if we can identify this disease in its earliest route and then implement treatment. A lot of the clinical trials start at the very earliest that it’s possible to identify it. One major development which came out of clinical trials, some which were conducted here, was to test a different type of brain scan, a type of PET scan that can actually identify the presence of these toxic proteins in the brain without actually having to look at a piece of the brain tissue. This is one of the limitations of this disease. So many other disease states you can take a blood test, a tissue sample to make a diagnosis. We realistically can’t do that with Alzheimer’s disease. There’s a lot of guess work it takes time to look at the symptoms, to look at the big picture to try to figure out what’s going on, and that has always been a limitation of these trials. Obviously, you want to make sure you’re treating the exact disease state that you think someone has. It raises a very important point. When people come to our memory center, and people should know this, when you go to see any doctor because you’re worried about your memory there’s not a single test to make a diagnosis. It’s important to do a full evaluation. To look at what are the symptoms, what are the different medical factors and medications, to look at a brain scan so many different things have to be considered to really get the most accurate diagnosis. Unfortunately, that doesn’t always happen.
The general thought is that people living with Alzheimer’s disease I mean your thought is they’re miserable, they’re unhappy, they don’t know their loved ones, they don’t recognize people. Say in a case like Wannita Varga could these people be living a happy existence. Can they be happy and have the disease?
Dr. Agronim: I think there are a lot of misconceptions and stereotypes about what it’s like to have Alzheimer’s disease or what someone is going through. Every person’s journey is different. I’ve seen individuals who their symptoms remain stable and mild for many years before progressing and others that they progress more quickly. Sometimes, it’s difficult to know what’s contributing to that. But I can tell you this in every situation there is always the person still there in many different ways. And if we fail to take the time and consideration to really engage with that not only do we miss out giving someone meaning value, but it makes it more difficult for them. Without question, even while people face changes in memory they’re still able to engage in so many important meaningful and joyful aspects of life. This is why the better attitude that we have towards the disease the more engaged we remain with individuals with it and the family it affects the course of it without question.
People really do want to know is there a way to prevent getting Alzheimer’s or anything they could do.
Dr, Agronim: We all would love to be able to prevent Alzheimer’s disease, and we do have a pretty good understanding of what some of the risk factors are. Some of which we can alter, some of which we can’t. For instance, there may genetic factors that obviously we can’t change, and those are probably some of the most important factors. There are lifestyle aspects that can make a difference increasing or decreasing risk. We often educate people to have what we call brain healthy lifestyles. I would describe this very much like a heart healthy lifestyle because we know that’s what good for your heart is good for you brain and vice versa. We emphasize moderate physical exercise; we emphasize keeping yourself socially and intellectually stimulated. We emphasize a diet that rich in fruits and vegetables very much like a Mediterranean diet. The key is to do things that you enjoy. If there’s certain puzzles or games that you like or certain social activities, we focus on that because; people continue to do that and that repetition, that engagement is really so important. These lifestyles are important for anyone at any age. It doesn’t mean that we can absolutely prevent Alzheimer’s disease, but if we can reduce the risk, if we can push off the expression for a few years that can make a difference especially for late onset Alzheimer’s disease. If someone maybe is on course to start getting symptoms at eighty or eighty five, and you can push that off for five or more years that’s a big deal, that can make a difference. Again, a brain healthy lifestyle is relatively easy for people to engage in and that’s what we encourage at any stage in life.
Is there any one treatment now that stands out to you? I know you mentioned the clinical stem cell trial, something cutting edge, something that you feel is on the breakthrough?
Dr. Agronim: The existing medications that are approved by the FDA can bring modest improvement in symptoms and that might not be something durable for a lot of people. But that’s the best we have. If I look at clinical trials, personally, I think that the immunotherapy approaches are some of the most exciting because the promise is that if we can intervene even before people get symptoms, and we can somehow head off, reduce, slowdown the buildup of these toxic proteins assuming that they are the main cause the expectation would be that this could head off the disease or at least slow the progression of it. So I’m excited about those trials, there’s still a lot of data we have to gather we still need people involved in these clinical trials. But my gut feeling is that that’s going to be the most promising area in the next few years.
You did recently release a book, just tell us the title and just brief statement what that book is about. Because it is about aging.
Dr. Agronim: I’m going to mention two books. It’s important for me to educate patients, caregivers and the community on these diseases. I have two books that I emphasize this in. The first is called The Dementia Caregiver, it’s a guide to caring for someone with Alzheimer’s disease and other neurocognitive disorders. It’s really an A to Z guide on how to be a good caregiver and really covers all the bases in terms of that. I also have a book out called, (The End of Old Age Living a longer and more purposeful life) and the book really says that we always gain strength as we get older. It’s important to recognize those whether we’re aging well in our opinion or even if we have Alzheimer’s disease. There are always aspects to us our wisdom, our creativity; our purpose that can make a difference for us it can make a difference in other people’s lives. We need to look at aging itself as a source of strength rather than only looking at the negative aspect of it. To me, this philosophy emphasizes the positive aspects of aging. One thing that’s clear is that our experience of aging is largely a product of how we look at aging, and if we look at it in a positive way aging can become more positive for us. If we only look at it from a negative perspective one of decline, and death often that writes the story of it for us, it’s so important to remain engaged with ourselves with other people as we get older and realize the great potential we still have.
Are those books available on Amazon?
Dr. Agronim: Both books are available on Amazon, any other book website, and I also have a website marcagronim.com. I have no information on the books, but lots of links to articles and blogs which really give the same message about taking a more positive attitude toward ageing.
END OF INTERVIEW
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