Drexel University historian Jesse F. Ballenger, PhD, has traced the history of Alzheimer’s disease — and the evolving attitudes around aging. Here's a historian's perspective on dementia.
Our scientific understanding and general attitudes toward dementia have evolved in the past century. When Alzheimer’s was first written about in 1906, how we think about cognition, aging, and self were quite different than they are today. Now, with more understanding of the differences between normal aging and cognitive decline and the development of newer monoclonal antibody drugs— the word “Alzheimer’s” has a much stronger connotation.
So, how does the history of Alzheimer’s disease and our attitudes towards it impact us now?
Jesse F. Ballenger, Ph.D., an expert on the history of Alzheimer’s, is a historian of medicine who teaches bioethics and health humanities at Drexel Unversity.
He has traced the history of Alzheimer’s disease and attitudes around aging in Self, Senility, and Alzheimer’s Disease in Modern America (Johns Hopkins University Press, 2006). He is also working on a book called Dementia – A Critical History, in which he explores the broad human experience with this condition from antiquity to the present.
He joined Being Patient editor in chief Deborah Kan to discuss the history of Alzheimer’s and how our attitudes around aging have shifted. Read or watch the full interview to learn what the history of Alzheimer’s disease and dementia can teach us today.
Being Patient: Alzheimer’s is actually named after a man named Alois Alzheimer. Tell us briefly about him and how the disease was first discovered.
Jesse F. Ballenger: I think the important thing to know about Alzheimer, and the other crucial player, is his mentor and really his boss, Emil Kraeplin, who was perhaps the most influential psychiatrist in the world at that time. They were not interested in Alzheimer’s or dementia as a problem of an aging society; they were interested in trying to elevate the status of psychiatry.
Medicine in the late 19th century had made a great deal of progress. The template for modern medicine was microbiology and germ theory. This was something for which you could identify a specific pathogen and, hopefully, do something about it. The therapy was not so caught up yet, but you could really explain what a disease was, and how we might think about intervening in psychiatry was not there at all. It was very hard to even say what mental illness was, with the exception of what was called general paresis, which was end-stage syphilis. There were simply no diseases that could be tied to specific pathologies.
So, dementia was interesting because Alzheimer, his greatest contribution to psychiatry, was, as a pathologist, he developed some techniques for studying the brain at the microscopic level. He and some of his colleagues figured out how to stain brain tissue, how to put it under a microscope, and how to identify pathological structures.
Being Patient: We’re talking about the early 1900s, right?
Ballenger: I apologize. We’re talking about from, say, the 1890s, and Alzheimer dies in 1915, I think it was. Dementia seems fascinating because it seems to be a condition which can be tied to a specific brain pathology, and Alzheimer’s contribution, for which he’s remembered, is a very precise clinical description, which basically still holds and is tied with the identification of some specific pathological features in the brain. Those things seem to be associated.
“His famous first patient was Auguste Deter, and she was 51 years old when she came into his clinic.”
His famous first patient was Auguste Deter, and she was 51 years old when she came into his clinic. He followed his case for a number of years until she died. That is kind of the index case for what came to be called Alzheimer’s. What’s fascinating is they were interested in her case, particularly because she was relatively young. Yet, it was the kind of pathology which he knew was better associated with senile dementia.
Being Patient: When talking about the late 1800s and early 1900s, wasn’t 51 fairly old? Were they living until their 80s?
Ballenger: Well, here’s something we’re commonly confused [about]. We look at things like, “Oh, life expectancy at birth was…” I don’t know what it was like in Germany at that time or Europe, but it was compared to us to be quite low. Maybe the 60s, maybe the 50s. We look at ancient times, or really pre-modern times, and we say, “Wow, life expectancy at birth was 40. In ancient Rome, it’s estimated to be in the 20s. There must have been no old people.” But that’s really not true because most of that’s life expectancy at birth. So, most of this death was with infants before the age of one. If you live through infancy and childhood, you stood a decent chance of living to be an adult. If you live to be an adult, you stood a decent chance to live into your 60s, 70s, or 80s.
So, there are plenty of older people around people old enough to get dementia, I think in the United States, I believe in the 1900s, I would need to go look this up, but I believe it was like 4 percent. Over 65, today, it’s 12 percent. Yes, there are many more older people, but it’s not as though old age [was] unknown, and it’s not as though dementia was unknown.
Being Patient: In her case, at age 51, it’s classified as early onset, right?
Ballenger: And that’s why it seemed like a disease to them. As originally classified, Alzheimer’s disease, which was defined as dementia, appears to be the same as senile dementia, but it is early onset. So, that’s what was called Alzheimer’s disease in 1906, when Alzheimer’s was published.
Being Patient: He must have found out through autopsy, right? There weren’t any fancy scans back then. So it was after she died. This patient that he opened her brain, is that when plaques were first discovered?
Ballenger: It’s a little more complicated than that, but I’ll roll with that. Plaques were known and described, and they’re not unique to Alzheimer’s disease. There are some other conditions as well. But, they had been described as early as 1895 by Alzheimer, and people who worked in his lab. They were interested in these kinds of structures.
Again, their game, what they’re really interested in, is putting psychiatry on a firm foundation, and this seemed like a brain pathology that could be fitted to a specific disease. That meant maybe we have identified a mental disorder that’s as solid and understandable as, say, tuberculosis or an infectious disease. Germ theory is kind of the gold standard of what modern medicine was at that time.
Being Patient: Was the disease named after him after he passed away? Or was this a major discovery in his career?
Ballenger: The irony is, if you read Alzheimer’s obituaries, no one even mentions it. It wasn’t interesting to them in the way that it was for us. Again, it’s momentous to us because we are in a different world demographically and have different attitudes towards aging, which I assume we’ll get to eventually. But, he was remembered. It was named while he was still alive. It was in the 10th edition of a textbook that Kraepelin published. It was one of the most influential books in the history of psychiatry. It’s named.
“Germ theory is kind of the gold standard of what modern medicine was at that time.”
Kraepelin has a particular place for trying to establish a rational system of diagnostic categories. That’s kind of his, at that time, certainly his contribution to the history of psychiatry. So, he’s trying to sort all this out. In his view, Alzheimer’s disease counts as a disease because it’s tied to a specific brain pathology. It has a clear clinical picture that you can follow. It has a clear course and prognosis.
But it’s not senile dementia because this is the interesting thing; as they viewed it, what came to be called Alzheimer’s disease was interesting because it occurred in younger people. If it was just senile dementia, that seems like aging. That’s not really something that seems to be some kind of extreme version of what normally happens. So, the category languished like it was recognized; it was named in 1910. Really, specialists would have run across it reading deeply into it. This was a 600-page book, and this is like a paragraph where it’s named.
Being Patient: Do we know the prevalence of younger-onset Alzheimer’s back then? Was it that enough people were getting Alzheimer’s at a younger age that it kind of captivated the attention, comparing it to senile dementia in older people?
Ballenger: No, it didn’t get attention, and precisely for that reason. I presume, assuming everything we know about early onset and the epidemiological facts around early onset are and were roughly the same back then as they are now. I don’t see any reason, based on what we know, to think otherwise. It would have been quite rare, and so that kind of dilemma of this disorder. It was interesting because it looked like a brain disease, and that is what they were trying to discover, right?
“They were seeing a lot of senile dementia, and that eventually became a significant issue because, in the United States, mental hospitals [were] filled with people with dementia.”
Brain diseases as a firmer way for psychiatry to orient itself. But it was going to be very rare, so it was vanishing. It was not a disease category that psychiatrists were seeing a lot of. They were seeing a lot of senile dementia, and that eventually became a significant issue because, in the United States, mental hospitals [were] filled with people with dementia.
Being Patient: What time period are we talking about now?
Ballenger: Really roughly the same time period, but it had been increasingly so through the 1920s, 30s, and 40s.
Being Patient: When did Alzheimer’s and dementia make that jump from actually being kind of an anomaly to a “mainstream” disease that is highly diagnosable in different ages?
Ballenger: The short answer is the 1970s. The situation is this categorization, handed down by Kraepelin, and Alzheimer’s, and anyone working in this area. By that, I mean psychiatrists who were interested in the dementias or who were interested in holistic, [who] kind of knew the situation. The situation [being that] the pathology appears to be identical. In early-onset cases and in people getting dementia at older ages, the clinical course seems to be the same.
[There] is just kind of an intuitive sense that it must be something different in younger people if someone’s getting it in their 50s, it must be something different, but there’s an understanding that there’s not a super good reason for thinking that. What happens is there’s increasing awareness of aging as a significant issue in society.
This happens for a variety of reasons, some of which are obvious. We are getting more older people. We do have a kind of demographic transition. We finally start to have something like a longevity revolution where people are living longer. So, it becomes a more prominent problem. This is accelerating through the mid-20th century.
“There was no nursing home industry at that time… They start to think we need to understand this and be able to do something about it.”
It’s particularly a problem, as I mentioned, for psychiatrists because mental hospitals become a place where [people go] if people can’t get care elsewhere. There was no nursing home industry at that time. There is not any nursing home industry as we understand it. It’s kind of a place of last resort, and they’ve got a lot of people on their hands. They start to think we need to understand this and be able to do something about it.
Being Patient: Is there such a thing as being senile? Is that a condition that’s not dementia? Or was that just a term we used to use at that time? Could you be senile without having dementia?
Ballenger: There are a couple of different ways to approach that question. I mean, biologically, there are changes that occur, and you could call those senile. The term obviously also has a pejorative meaning, and in a pejorative history that has to be disentangled, that has to do with assumptions [about] older people, and this too is a historical thing. It’s not like everywhere, always that older people were thought of as kind of worthless, used up, unable to really contribute to society.
That’s an attitude that intensifies, at least, if not outright emerges, with industrialization and the kind of transfer transformation from a kind of traditional, more hierarchical society to a kind of liberal modern industrial economy. That’s a long transition. That is kind of running in the background and fueling a lot of this if that answers your question.
Biologically, something’s going on, but that term itself is a very loaded one. It’s also one decisions are made [on]. The term senile dementia comes to be regarded by, if I can kind of jump ahead to the 70s—Robert Butler was the first director of the National Institute of Aging, and he’s one of the most important figures in the early history of maybe more properly called the modern history of Alzheimer’s disease. He wrote a book called Why Survive: Being Old in America.
He was an early gerontologist and a psychiatrist, and he was very concerned broadly with how older people were treated. In his view, senility came to be viewed as a wastebasket. This [is] pretty much a direct quote, “a wastebasket term,” to kind of sweep all the problems that that health problems of older people that medicine doesn’t want to deal with.
“Older people are marginalized by what they face.”
There are definitely senile changes, and if you read a geriatric journal of that time period, and I read old stuff rather than new stuff, it could be that the word senile, in a way, I’m about to suggest. There is a neutral, non pejorative use of senile in geriatric science, where people will talk about senile cell changes or senile skin changes. By that, they just mean changes associated with, you know, the last decades of an organism’s life. But it also has this massively pejorative idea behind it, that because of that biology, older people are marginalized by what they face.
Being Patient: It’s definitely an older, more old-fashioned term. You don’t typically hear it with diagnosis.
Ballenger: You don’t. It’s absolutely forbidden in diagnosis, and that is precisely where Alzheimer’s comes into being. You can do a Google Books Ngram. It’s a tool that Google creates and allows you to search the full text of every book that Google Books has scanned in, so it’s millions of books in English, possibly tens of millions. If you do a Google Ngram, it’s really fascinating.
If you do the words “senile” and then you do the word “Alzheimer’s.” You’ll go to the left tab where it says 1800 to 2019 and change it to 1910. If you do that, you see the word senile kind of goes down. Now, if you go and add “senile Alzheimer’s disease,” I think you’ll see an interesting thing.
What you see here is 1910; that term was discovered, and it’s virtually unused. These are all the books published in English, so no one is in books anyway, saying anything around 1970. You can also add the term “senile dementia,” and you’ll see that around 1970, those terms declined in use.
There is a change in terminology, and it’s connected to Robert Butler’s objection in his very influential book, Why Survive— it won the Pulitzer Prize. It was a best-selling book. It was one of the books that you could point to as a kind of a revolution in attitudes toward aging. The book takes on ageism and says older people are still people.
Being Patient: Compared to the early 1900s versus now, what have been the changes in perceptions of aging?
Ballenger: Essentially, the idea that you should continue to be healthy, you should continue to be basically healthy, and you should be able to lead a fulfilling life deep into old age. So, nothing should dramatically change about your life from 65, not immediately you’re over the hill, etc. That was a new attitude.
What it meant was that conditions, you talked before about senility being a term that would be just applied to whatever sort of general problems, as an older person, that grandma might have. It might include forgetfulness, it might be physical changes, but it was largely for cognitive changes because those were and are among the most frightening of the age-associated changes, right?
Being Patient: As you look through the history of the progression of Alzheimer’s, what are some of the conclusions you can draw about Alzheimer’s disease? Are there any kind of key takeaways?
Ballenger: It’s crucial to understand that Alzheimer’s disease is not, and this is true of every diagnostic category. It is not simply a medical category where there’s the science; here it is. It’s not an object of nature. It has political meaning, political significance, social significance, and cultural significance. It reflects not only [scientific progress], but changes in the political, economic, social, and cultural situation of the people who get categorized with it.
It’s a disease that reflects these profound changes in attitudes toward old age. That’s kind of a fundamental lesson. I’m always mindful and feel a little humbled if I’m trying to talk to an audience of people who are dealing with this problem. What is this? What does this mean for me? For me and my loved ones who might be struggling with this, one of the things I think it should mean is skepticism, which might be too strong of a word.
“It’s a disease that reflects these profound changes in attitudes toward old age.”
You should understand that this term, “Alzheimer’s disease,” rose in significance, and Alzheimer’s rose in prominence as a public problem. At the same time, that big pharma rose. There are changes associated around the 1980s. Around the same time, if you remember that graph, that takes off. We could do a similar graph about the growth of Big Pharma. That’s when the pharmaceutical industry, as we know it, becomes so enormous and so powerful. What I’m getting to is [that] it’s worth thinking about these kinds of tangled histories and how agendas might be at play, and that [you may] want to think about and evaluate.
Being Patient: I have to unpack this a little bit because now you’re giving me more questions. This is also a disease that we don’t have a cure for, right? We’ve had associated medications. Frankly, the majority of them, up until now, have new experimental medications and monoclonal antibody therapies. Still, up until just this year, we didn’t have anything except for medications to treat symptoms. A lot of those are questionable as to how long they actually work. So, I’m curious about this. What should we surmise by looking at the rise of the disease in terms of its frequency and all of that and the rise of Big Pharma?
Ballenger: You are looking at one of the most enormous and potentially lucrative markets for a drug. I think it’s fair to say Aricept, which is the earlier generation drugs we’re looking for.
Being Patient: That’s the first pill everyone is given when diagnosed.
Ballenger: Right, and it’s very hard to get off. We could talk about that because of assumptions about it that may or may not be well founded. The jury is very much still out about what’s going to happen with the monoclonal antibodies if one of them is going to be a blockbuster, and how much it helps patients. Is the jury still out?
Being Patient: We don’t know. We know that monoclonal antibody therapies can take away plaque, but we don’t know if taking away plaque in the brain means you’re going to slow neurodegeneration.
Ballenger: I mean, I don’t want to be super cynical, but on the other hand, the game that we’re talking about here— money is made on drugs, whether they help or not, right? It isn’t just drug sales. It’s an investment. The largest single insider trading scandal in US history was associated with an Alzheimer’s drug. There are enormous sums of money at play in all of this.
“The largest single insider trading scandal in U.S. history was associated with an Alzheimer’s drug. There are enormous sums of money at play in all of this.”
Being Patient: Because it’s so common, right?
Ballenger: Because it’s so common and because it’s so frightening. We could talk about how Alzheimer’s was put on the map as a major problem, how it was kind of sold, how it was changed from senility, and which it was such a general term that it was, I would argue, not nearly as frightening as Alzheimer’s became.
Being Patient: It suddenly became a disease rather than just normal aging, right?
Ballenger: A [dreaded] disease that was particularly horrible because of the idea that it killed you before you even die, right? That’s horrible language. I don’t like it, but that is the kind of language that was used to elevate Alzheimer’s as a public problem and to raise public awareness. When the public supports the disease, the funeral that never ends, the long goodbye, you know the terms. So, that degree of fear.
Again, I’m not trying to just be in any way dismissive about the challenges associated with dementia. But it is worth saying people’s experiences of it are very diverse. It’s not so uniform of an experience.
Being Patient: Are you inferring “dementia” might be a better term, or is it an umbrella term?
Ballenger: It is more accurate.
Being Patient: And then with dementia, like the medications are trying to fit a scenario that may not be every scenario— is that what you’re inferring?
Ballenger: It’s almost a scenario that fits [no one]. I know you do talk to brain scientists about this, but there is really, from my reading of the scientific literature, there is very little pure Alzheimer’s disease. The most common cases of Alzheimer’s involve multiple, usually multiple, chronic diseases. It is age-associated and associated with a lot of other deterioration. It’s also associated very often with other forms of dementia.
Being Patient: What should people take away from this? If you have a loved one who has been diagnosed, or if you are experiencing early signs and living with a diagnosis, what should they take away from understanding the history of Alzheimer’s disease?
Ballenger: I don’t think there’s a simple lesson. There are a couple of lessons, so I’m sorry about that. You may come away with more questions, and not in which I’d say, “My job here is done.” But one is that I would hope people realize they’re not alone. They’re part of a large kind of social and cultural process and problem, and then it would be good to think about your experiences as part of a shared experience. Organizations like the Alzheimer’s Association, which is something that they’re very good about, are helping to forge and provide a forum for people to kind of share their experiences.
I do think there’s still a tendency to think of this as just me and my family struggling with this thing. It’s not just you and your family struggling with this terrible thing. You are part of a larger social process. That’s one thing I would mention, and then I would argue that it is valuable to think about disease categories, treatments, technologies, you know, all of which you’re going to learn about as you go through this experience, to appreciate them as historical things. By that, I mean they are embedded in their particular contexts.
To really understand these things, you need to understand and think about [them], and it is powerful to think about how they reflect and are, in some ways, products of their context. I don’t want to say that there isn’t a biological reality to dementia. I’m not suggesting anything of that nature. But I am arguing that, in particular, our attitudes towards these things, the way they’re often expressed, the way they’re experienced, is mediated through the ideas that we have around us in a particular place in time so that we think about it very differently.
“There’s value in understanding and thinking about this complexity.”
We think about this experience differently than people in the 19th century. The institutions we’ve created to help us navigate this are very different and shape the experience we have, and the drugs we are developing are connected to agendas that, you know, they’re not; they’re not just these value lists, like things that are simply objective tools. They are created to fulfill multiple agendas. They’re not always simply the betterment of patients.
I am arguing that there’s a value in understanding and thinking about this complexity. I also know that if you’re tuning into this and you’re facing some very specific problems, this can all seem very abstract and very overwhelming.
Being Patient: I mean, honestly, like we have learned through Being Patient and through launching and interviewing hundreds of people who have been diagnosed, that it’s not dying of dementia anymore. It’s living with dementia. That’s a key difference today compared to just ten years ago, right? I think because we’re detecting the disease earlier, and we have ways to do that, there’s a long time when people are still very independent and live healthily with biomarkers or signs of the disease. I think that definition is evolving the better we get at diagnosis and understanding.
Ballenger: I absolutely agree. I think one of the most encouraging things that have happened since I wrote my first book on this was about the formation of the modern concept of Alzheimer’s in the 70s and 80s, and I said it was incredibly stigmatizing.
I think the rise of people diagnosed early, being self-advocates, coming together as groups of people with dementia who are not content to go away simply, and not content to simply let other people speak for them, not content to simply to be treated in every way you can think of that, but to speak for themselves to take their own your own conditioning on share— that is incredibly powerful.
Katy Koop is a writer and theater artist in Raleigh, NC.