Interview with Bill Thies Ph.D.
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TOPIC: Alzheimer's Disease and the Alzheimer's Association
AO/Beck: Hi Dr. Thies. Thanks for your time today. Alzheimer's is such an important topic for those of us in communication disorders. As professionals, we often have to try to separate out what part of a communication disorder is due to hearing loss, or speech and language issues, and which part is due to Alzheimer's. Of course, as sons and daughters, we also have to address Alzheimer's issues in our parents and loved ones too.
Thies: Hi Dr. Beck. You're right on all counts. Alzheimer's does indeed impact everyone, professionals and families too.
AO/Beck: Before we get to the Alzheimer's Association and related issues, I'd like to spend a few minutes learning about your professional education and background, if I may?
Thies: Sure, that's fine. I got my doctorate from the University of Pittsburgh in pharmacology in 1970. I was on the faculty there for about seven years and then I went to Indiana University as a faculty member in the Departments of Pharmacology and Physiology. I spent 12 years at Indiana University as an educator and a researcher. After that, I went to the American Heart Association and spent ten years working as a non-profit scientist and then about five years ago came here to the Alzheimer's Association.
AO/Beck: Very good. Would you please tell me a little bit about the Alzheimer's Association?
Thies: The Alzheimer's Association is relatively young, by non-profit health standards. The association has been in place since 1980. At that time there was very little Alzheimer's research and a real shortage of knowledge about the disease itself. A number of people who had struggled with Alzheimer's issues came together in Chicago, and they decided there really needed to be an organization dedicated to improving the situation, and so they founded one.
In the 20 plus years since, there's been a tremendous increase in the awareness of Alzheimer's disease. In the late 1970's, when NIH was looking to see how much Alzheimer's research was happening across all the institutes, they found very little. NIH struggled to put together a million dollars for Alzheimer's research, but they were able to get it funded. The majority of research into Alzheimer's was, and is still, funded by the NIH. NIH funding of Alzheimer's research has gone from almost nothing to more than $600 million a year. Our association, the Alzheimer's Association, went from just about zero funding some twenty plus years ago, to being an organization which currently has a budget of 200 million dollars for the whole organization. So that represents a tremendous amount of growth, and has provided amazing knowledge and resources.
AO/Beck: That is really an amazing growth curve. Along with the growth and funding of research, I think the term Alzheimer's has slipped into the national consciousness as a buzz word, and it seems like the majority of people know what it is.
Thies: I agree. There has been an increasing awareness of Alzheimer's disease and that's been a good thing. People are beginning to have their consciousness raised about Alzheimer's, and this is timely because we're about to go through a period in our history that will be different from any other. Our population is going to get older at an explosive rate over the next 50 years and we need to be ready for the many changes that will occur.
AO/Beck: Are you speaking about the fact that Americans are living longer than ever before?
Thies: Yes. Some of this is because people are living longer, but perhaps the immediate issue is the post-World War II baby boom generation approaching the ages where they are most likely to develop Alzheimer's disease.
AO/Beck: How many people in the USA have Alzheimer's?
Thies: We estimate there are potentially some 4 million people in the USA with Alzheimer's. However, by the middle of the century, if something doesn't change, we anticipate possibly 14 million Alzheimer's patients. That would be a burden on our healthcare system that we simply could not manage.
AO/Beck: Can you give me an idea as to what the actual costs are to take care of these people?
Thies: Currently we estimate Alzheimer's disease costs one hundred billion dollars a year, just to care for the people in the USA. If we think about tripling that over the next 50 years, it's perfectly clear that's going to bankrupt the system and will simply overwhelm our ability to deliver care. There won't be enough manpower to deliver the care needed. So all of that represents to us, an important mandate for finding better ways to treat this disease, and hopefully finding a way to prevent the disease from happening.
AO/Beck: What are the early signs and symptoms of Alzheimer's?
Thies: Most often the first presenting characteristics are problems with memory. This is one of the difficulties in identifying the earlier stages of the disease because just about all of us have memory problems every day. Most of that's just normal for people. But for those developing Alzheimer's disease, memory difficulties become significant enough that an individual cannot go through their normal activities of daily living, and you see a truly a pathological memory problem. Let me give you an example we use to give you a separation between probable forgetfulness and probable Alzheimer's. Anybody can forget where their car keys are at any moment in time; that's not a pathological sign. But if you forget what your car keys are for -- that probably is something that ought to get your attention.
Of course, there are other things that cause memory problems. It's a good idea for people to see their physician if they have memory issues, because some of the things that cause memory problems are reversible and treatable, and a proper diagnosis and treatment plan can mnake a world of difference.
AO/Beck: What is the current thought as to why Alzheimer's occurs? What's the theory?
Thies: We've learned a huge amount about the chemistry of Alzheimer's disease over the last few years. I am not sure that anyone has yet put their finger on that very first molecular change that sends someone down the road to Alzheimer's disease. However, it is clear that in the Alzheimer's brain there is an accumulation of two abnormal proteins. One is called amyloid and this tends to accumulate outside and around nerve cells. Most people in the Alzheimer's field feel that amyloid is toxic and is detrimental to the survival of brain nerve cells. So with the accumulation of amyloid you begin to get cell death.
The other abnormal protein that accumulates is a protein called Tau. Tau is a protein involved in the structure of the neurotubular system. Nerve cells have an interesting geometry in that they aren't round or circular like a blood cell is. They have very long projections so you have a central cell body and then some very long projections from that. Some of those projections can be a couple of feet long. So you need to have a special system that moves things around inside the cell and this is called the neurotubular system. The neurotubular system is a bit like a set of railroad tracks that run through the cells carrying material in both directions from the cell body down to the end and from the end up to the cell body. And Tau is sort of like the railroad ties for that system, it stabilizes the system. In Alzheimer's disease, this protein accumulates from extra phosphate groups and when it does that it can no longer function to stabilize the system so that system comes apart and nerve cells then begin to die as the ends back up towards the cell body because they can't supply essential nutrients to the nerve endings.
AO/Beck: So nutrients and information transfer is lost?
Thies: Exactly. There's a preferential distribution of cells that are affected. The first cells affected in Alzheimer's disease are those involved in parts of the brain that integrate memory into behavior, and that's why memory problems become the first sign of the disease. It's also true that this is a particularly sensitive indicator for humans, because we integrate memory into behavior to a much greater extent than other animals do. We not only use our own memories but we collect libraries full of books for other people's memories and now we have the internet so we can find other people's memories any moment we want.
AO/Beck: That is really a wonderful analogy. I also really like the idea of integrating memory into behavior.
Thies: We see Alzheimer's impact on memory first, but the disease eventually spreads throughout much of the nervous system. Typically we see memory problems first, and then sometimes we see behavioral issues, sometimes patients with Alzheimer's disease become paranoid. Their ability to interpret what's happening around them becomes impaired. They lose the ability to do what's called executive function, which are complex thinking tasks. For example, you may see a circumstance where somebody who's worked their whole life as an accountant begins to lose the ability to manage their own checkbook. As the disease progresses into the later stages you'll begin to see motor difficulties.
AO/Beck: One thing that I've wondered is, is Alzheimer's fatal? I guess it's a matter of definition and degree?
Thies: Alzheimer's disease is fatal. People can die from Alzheimer's disease or, from complications secondary to Alzheimer's, such as loss of the ability to swallow, loss of nutrition and other problems too.
AO/Beck: So, as the disease progresses, patients become lethargic and non-responsive, and the body starts to shut down as a result of the lack of neural transfer?
Thies: Yes, in a nutshell, that's right.
AO/Beck: Are any medicines effective in treating Alzheimer's?
Thies: The current medications for Alzheimer's give some symptomatic relief. They've been of great benefit to patients and families, but they do not stop the progression of the disease. Scientists are continuing to search for medications that will hopefully stop the disease. Researchers have found that people who take large doses of anti-inflammatories, have early estrogen replacement therapy, take statin drugs for cholesterol, and blood pressure lowering drugs for high blood pressure, all seem to have less Alzheimer's disease. As you can imagine, that's driven a whole set of investigations to see if you can demonstrate that adding those medications will in some way decrease the occurrence of Alzheimer's disease. The epidemiological studies don't prove the case they only point us in a direction. We really need to do a blinded clinical trial to establish the true effectiveness of each of these medications.
AO/Beck: What about research into the proteins you mentioned earlier?
Thies: The other area that's generating new leads to treatment comes from neural biochemistry, and relates directly to the proteins we discussed. Probably the furthest along is the knowledge of how amyloid is made and attempts to find molecules that decrease the amount of amyloid that's made, or increase it's removal, and to try to use that as a technique in the treatment of Alzheimer's disease. There are several studies underway looking at various aspects of this.
AO/Beck: What is the average age of onset of Alzheimer's and what is the typical prognosis?
Thies: Well I'm going to give you a complicated answer to that instead of just giving you a couple of numbers, which would be much simpler, but not quite as informative.
The biggest risk factor for Alzheimer's disease is age. At age 65, 3% of the population that may have the disease. But by age 85, almost half the population will have the disease. As you go from age 65 to age 85 you have increasing risk of developing this disease.
In terms of the prognosis, one study found the average survival of people with Alzheimer's disease tends to be around eight years, but I think that's a bit misleading. A healthy 65-year-old who's developed Alzheimer's disease will probably live longer than a frail 85-year-old with multiple co-morbidity. So there's clearly going to be a distribution and a large standard deviation.
I think it's important to realize that as people get past the beginning stages of Alzheimer's disease, they almost invariably need help managing their daily activities. In the early stages a family caregiver may help do some of the work, but in later stages, you may need a nursing home or similar facility. Of course, that tends to be very expensive and also tends to be disruptive to families for any number of reasons.
You can have one frail elderly person taking care of another one, which often causes deterioration in the health of the caregiver. And you can develop the sort of sandwich generation issues where you have a child trying to take care of a parent, sometimes at a distance, which again can cause profound difficulties in the child maintaining their productivity and that sort of thing. So it causes multiple issues within the family itself.
AO/Beck: Can you tell me specific implications for audiologists and speech language pathologists? In other words, are there specific speech language pathology signs and symptoms, or specific audiology or hearing loss signs and symptoms that are correlated with Alzheimer's?
Thies: Well I think the work of several healthcare professionals gets intertwined here. We don't have a simple blood test for Alzheimer's disease and so the evaluation of the individual for the presence of the disease is done by talking to the individual. We all know that's a relatively imprecise way to gather data. And certainly if you are depending on a patient to tell you or to give you certain type of answers for you to evaluate the memory, if they can't hear or they have difficulty speaking that's going to make it very much harder to gather that kind of data. Of course, language and memory issues are very difficult to separate out.
There are ways to make the diagnosis more objective with certain kinds of psychometric testing, but at this time, the diagnosis is made from a clinical exam and that's fraught with all the difficulties of doing that.
So I think there could be a number of instances where an individual may be brought to the audiologist, saying Uncle Charlie's having some trouble hearing. When in fact, it's really that he may be having trouble interpreting what he's hearing and integrating it into a memory stream, and that's why he's not responding the way he would have in the past.
Similarly, I think there are going to be times where a physician is going to be evaluating an individual for Alzheimer's disease, and the physician may get an idea of a much worse picture because the individual he's examining can't speak. Certainly there's a notorious problem with people who have aphasia for instance, on all of the standard psychometric tests they look awful and yet they may be perfectly well able to manage on a daily basis.
AO/Beck: Very good. Thank you for being so generous with your time, and for giving us so much to think about. Can you give me the website address for people looking for more information regarding Alzheimer's?
Thies: Yes. We are at www.alz.org. There's quite a lot of information there.
AO/Beck: Yes indeed. I have visited the website, and I encourage the readers to view it too. Thanks again.
Thies: You're welcome. Thanks for the opportunity.
Thies: Hi Dr. Beck. You're right on all counts. Alzheimer's does indeed impact everyone, professionals and families too.
AO/Beck: Before we get to the Alzheimer's Association and related issues, I'd like to spend a few minutes learning about your professional education and background, if I may?
Thies: Sure, that's fine. I got my doctorate from the University of Pittsburgh in pharmacology in 1970. I was on the faculty there for about seven years and then I went to Indiana University as a faculty member in the Departments of Pharmacology and Physiology. I spent 12 years at Indiana University as an educator and a researcher. After that, I went to the American Heart Association and spent ten years working as a non-profit scientist and then about five years ago came here to the Alzheimer's Association.
AO/Beck: Very good. Would you please tell me a little bit about the Alzheimer's Association?
Thies: The Alzheimer's Association is relatively young, by non-profit health standards. The association has been in place since 1980. At that time there was very little Alzheimer's research and a real shortage of knowledge about the disease itself. A number of people who had struggled with Alzheimer's issues came together in Chicago, and they decided there really needed to be an organization dedicated to improving the situation, and so they founded one.
In the 20 plus years since, there's been a tremendous increase in the awareness of Alzheimer's disease. In the late 1970's, when NIH was looking to see how much Alzheimer's research was happening across all the institutes, they found very little. NIH struggled to put together a million dollars for Alzheimer's research, but they were able to get it funded. The majority of research into Alzheimer's was, and is still, funded by the NIH. NIH funding of Alzheimer's research has gone from almost nothing to more than $600 million a year. Our association, the Alzheimer's Association, went from just about zero funding some twenty plus years ago, to being an organization which currently has a budget of 200 million dollars for the whole organization. So that represents a tremendous amount of growth, and has provided amazing knowledge and resources.
AO/Beck: That is really an amazing growth curve. Along with the growth and funding of research, I think the term Alzheimer's has slipped into the national consciousness as a buzz word, and it seems like the majority of people know what it is.
Thies: I agree. There has been an increasing awareness of Alzheimer's disease and that's been a good thing. People are beginning to have their consciousness raised about Alzheimer's, and this is timely because we're about to go through a period in our history that will be different from any other. Our population is going to get older at an explosive rate over the next 50 years and we need to be ready for the many changes that will occur.
AO/Beck: Are you speaking about the fact that Americans are living longer than ever before?
Thies: Yes. Some of this is because people are living longer, but perhaps the immediate issue is the post-World War II baby boom generation approaching the ages where they are most likely to develop Alzheimer's disease.
AO/Beck: How many people in the USA have Alzheimer's?
Thies: We estimate there are potentially some 4 million people in the USA with Alzheimer's. However, by the middle of the century, if something doesn't change, we anticipate possibly 14 million Alzheimer's patients. That would be a burden on our healthcare system that we simply could not manage.
AO/Beck: Can you give me an idea as to what the actual costs are to take care of these people?
Thies: Currently we estimate Alzheimer's disease costs one hundred billion dollars a year, just to care for the people in the USA. If we think about tripling that over the next 50 years, it's perfectly clear that's going to bankrupt the system and will simply overwhelm our ability to deliver care. There won't be enough manpower to deliver the care needed. So all of that represents to us, an important mandate for finding better ways to treat this disease, and hopefully finding a way to prevent the disease from happening.
AO/Beck: What are the early signs and symptoms of Alzheimer's?
Thies: Most often the first presenting characteristics are problems with memory. This is one of the difficulties in identifying the earlier stages of the disease because just about all of us have memory problems every day. Most of that's just normal for people. But for those developing Alzheimer's disease, memory difficulties become significant enough that an individual cannot go through their normal activities of daily living, and you see a truly a pathological memory problem. Let me give you an example we use to give you a separation between probable forgetfulness and probable Alzheimer's. Anybody can forget where their car keys are at any moment in time; that's not a pathological sign. But if you forget what your car keys are for -- that probably is something that ought to get your attention.
Of course, there are other things that cause memory problems. It's a good idea for people to see their physician if they have memory issues, because some of the things that cause memory problems are reversible and treatable, and a proper diagnosis and treatment plan can mnake a world of difference.
AO/Beck: What is the current thought as to why Alzheimer's occurs? What's the theory?
Thies: We've learned a huge amount about the chemistry of Alzheimer's disease over the last few years. I am not sure that anyone has yet put their finger on that very first molecular change that sends someone down the road to Alzheimer's disease. However, it is clear that in the Alzheimer's brain there is an accumulation of two abnormal proteins. One is called amyloid and this tends to accumulate outside and around nerve cells. Most people in the Alzheimer's field feel that amyloid is toxic and is detrimental to the survival of brain nerve cells. So with the accumulation of amyloid you begin to get cell death.
The other abnormal protein that accumulates is a protein called Tau. Tau is a protein involved in the structure of the neurotubular system. Nerve cells have an interesting geometry in that they aren't round or circular like a blood cell is. They have very long projections so you have a central cell body and then some very long projections from that. Some of those projections can be a couple of feet long. So you need to have a special system that moves things around inside the cell and this is called the neurotubular system. The neurotubular system is a bit like a set of railroad tracks that run through the cells carrying material in both directions from the cell body down to the end and from the end up to the cell body. And Tau is sort of like the railroad ties for that system, it stabilizes the system. In Alzheimer's disease, this protein accumulates from extra phosphate groups and when it does that it can no longer function to stabilize the system so that system comes apart and nerve cells then begin to die as the ends back up towards the cell body because they can't supply essential nutrients to the nerve endings.
AO/Beck: So nutrients and information transfer is lost?
Thies: Exactly. There's a preferential distribution of cells that are affected. The first cells affected in Alzheimer's disease are those involved in parts of the brain that integrate memory into behavior, and that's why memory problems become the first sign of the disease. It's also true that this is a particularly sensitive indicator for humans, because we integrate memory into behavior to a much greater extent than other animals do. We not only use our own memories but we collect libraries full of books for other people's memories and now we have the internet so we can find other people's memories any moment we want.
AO/Beck: That is really a wonderful analogy. I also really like the idea of integrating memory into behavior.
Thies: We see Alzheimer's impact on memory first, but the disease eventually spreads throughout much of the nervous system. Typically we see memory problems first, and then sometimes we see behavioral issues, sometimes patients with Alzheimer's disease become paranoid. Their ability to interpret what's happening around them becomes impaired. They lose the ability to do what's called executive function, which are complex thinking tasks. For example, you may see a circumstance where somebody who's worked their whole life as an accountant begins to lose the ability to manage their own checkbook. As the disease progresses into the later stages you'll begin to see motor difficulties.
AO/Beck: One thing that I've wondered is, is Alzheimer's fatal? I guess it's a matter of definition and degree?
Thies: Alzheimer's disease is fatal. People can die from Alzheimer's disease or, from complications secondary to Alzheimer's, such as loss of the ability to swallow, loss of nutrition and other problems too.
AO/Beck: So, as the disease progresses, patients become lethargic and non-responsive, and the body starts to shut down as a result of the lack of neural transfer?
Thies: Yes, in a nutshell, that's right.
AO/Beck: Are any medicines effective in treating Alzheimer's?
Thies: The current medications for Alzheimer's give some symptomatic relief. They've been of great benefit to patients and families, but they do not stop the progression of the disease. Scientists are continuing to search for medications that will hopefully stop the disease. Researchers have found that people who take large doses of anti-inflammatories, have early estrogen replacement therapy, take statin drugs for cholesterol, and blood pressure lowering drugs for high blood pressure, all seem to have less Alzheimer's disease. As you can imagine, that's driven a whole set of investigations to see if you can demonstrate that adding those medications will in some way decrease the occurrence of Alzheimer's disease. The epidemiological studies don't prove the case they only point us in a direction. We really need to do a blinded clinical trial to establish the true effectiveness of each of these medications.
AO/Beck: What about research into the proteins you mentioned earlier?
Thies: The other area that's generating new leads to treatment comes from neural biochemistry, and relates directly to the proteins we discussed. Probably the furthest along is the knowledge of how amyloid is made and attempts to find molecules that decrease the amount of amyloid that's made, or increase it's removal, and to try to use that as a technique in the treatment of Alzheimer's disease. There are several studies underway looking at various aspects of this.
AO/Beck: What is the average age of onset of Alzheimer's and what is the typical prognosis?
Thies: Well I'm going to give you a complicated answer to that instead of just giving you a couple of numbers, which would be much simpler, but not quite as informative.
The biggest risk factor for Alzheimer's disease is age. At age 65, 3% of the population that may have the disease. But by age 85, almost half the population will have the disease. As you go from age 65 to age 85 you have increasing risk of developing this disease.
In terms of the prognosis, one study found the average survival of people with Alzheimer's disease tends to be around eight years, but I think that's a bit misleading. A healthy 65-year-old who's developed Alzheimer's disease will probably live longer than a frail 85-year-old with multiple co-morbidity. So there's clearly going to be a distribution and a large standard deviation.
I think it's important to realize that as people get past the beginning stages of Alzheimer's disease, they almost invariably need help managing their daily activities. In the early stages a family caregiver may help do some of the work, but in later stages, you may need a nursing home or similar facility. Of course, that tends to be very expensive and also tends to be disruptive to families for any number of reasons.
You can have one frail elderly person taking care of another one, which often causes deterioration in the health of the caregiver. And you can develop the sort of sandwich generation issues where you have a child trying to take care of a parent, sometimes at a distance, which again can cause profound difficulties in the child maintaining their productivity and that sort of thing. So it causes multiple issues within the family itself.
AO/Beck: Can you tell me specific implications for audiologists and speech language pathologists? In other words, are there specific speech language pathology signs and symptoms, or specific audiology or hearing loss signs and symptoms that are correlated with Alzheimer's?
Thies: Well I think the work of several healthcare professionals gets intertwined here. We don't have a simple blood test for Alzheimer's disease and so the evaluation of the individual for the presence of the disease is done by talking to the individual. We all know that's a relatively imprecise way to gather data. And certainly if you are depending on a patient to tell you or to give you certain type of answers for you to evaluate the memory, if they can't hear or they have difficulty speaking that's going to make it very much harder to gather that kind of data. Of course, language and memory issues are very difficult to separate out.
There are ways to make the diagnosis more objective with certain kinds of psychometric testing, but at this time, the diagnosis is made from a clinical exam and that's fraught with all the difficulties of doing that.
So I think there could be a number of instances where an individual may be brought to the audiologist, saying Uncle Charlie's having some trouble hearing. When in fact, it's really that he may be having trouble interpreting what he's hearing and integrating it into a memory stream, and that's why he's not responding the way he would have in the past.
Similarly, I think there are going to be times where a physician is going to be evaluating an individual for Alzheimer's disease, and the physician may get an idea of a much worse picture because the individual he's examining can't speak. Certainly there's a notorious problem with people who have aphasia for instance, on all of the standard psychometric tests they look awful and yet they may be perfectly well able to manage on a daily basis.
AO/Beck: Very good. Thank you for being so generous with your time, and for giving us so much to think about. Can you give me the website address for people looking for more information regarding Alzheimer's?
Thies: Yes. We are at www.alz.org. There's quite a lot of information there.
AO/Beck: Yes indeed. I have visited the website, and I encourage the readers to view it too. Thanks again.
Thies: You're welcome. Thanks for the opportunity.
