Dr. Jason Karlawish 0:00
In living with caring for someone with dementia, it's not just custodial work, or deception, or they just can't do so how can I amuse them? You know, but rather how can I be with them and create something out of our engagement with them and, and document how, you know, by bringing together persons with dementia, and persons with creative spirit, you can engage in activities that are co creating and meaningful as opposed to mere amusement and is bringing out something I mean, look, none of this is intended to be sort of like, Oh, it's all fine. And they're totally, quote, normal, whatever normal is, well, they're not I mean, they have disability, if you just said they're fine and let them be, they would die. Okay. But but but but the alternative is saying, well, they're just dependent and gone. And, you know, let's even you know, a vegetable, what does that leave you with? You know, and she chronicles... I talked about, I interviewed Anne for the book, and she chronicles how at one of the nursing home, she was working in doing her creative work, putting on one of the plays that they put on, a policeman came to the nursing home. And he was what I want to come in here, I want to, I want to help, how can I help? How can I be part of this, and, and he tells her the story that his grandfather had died in that nursing home some 3040 years earlier, with dementia, and how he was so mistreated. And it was such a miserable experience in the nursing home that he swore he would never go back to that death house. But now that what he was seeing was something was going on at this nursing home that wasn't so bleak and grim. And he actually wanted to come in and help come back to this place he swore he would never return to. And I think that that kind of connection is so important, because the alternative is one, where we begin to think once you think people are less than persons, if not not persons vegetables, you enter into very scary world morally about their worth, and their value and what they're owed or not owed. And that is not a world I'm very comfortable living in. And I'm very worried about living in that kind of world. Even in a democracy where we think everyone's equal, we should treat etc, though, that is a very scary place to occupy culturally.

Dr. Regina Koepp 2:21
I'm Dr. Regina Koepp. I'm a board certified clinical psychologist and I specialize with older adults and families. I created the psychology of aging podcast to answer some of the most common questions I get about aging, questions about mental health and wellness, changes in the brain like with dementia, relationships, and sex, caregiving, and even end of life. Like I say in my therapy group, no topic is off topic. We just have to have a healthy way of talking about it. So if you're an older adult, or caring for one, you're in the right place. Let's get started. On today's podcast, I interview Dr. Jason Karlawish. He's a Neurologist and co-director of the Penn Memory Center, and is on our podcast answering some of your burning dementia questions like what is mild cognitive impairment? And what's the difference between mild cognitive impairment, dementia and Alzheimer's disease? What are some of the best tips for staving off dementia when you have a mild cognitive impairment and in the field of dementia and dementia care, there are some debates around the pros and cons of an early diagnosis of a dementia disorder. Jason Karlawish and I talked about that. Toward the end of the episode, Dr. Karlawish and I dive deeper. And we talk about how we as a society value human life, including topics like why dementia should be seen as a disability that deserves accommodations and why we need to stop using harmful metaphors, like zombie or vegetable of people living with dementia. I hope that you listen all the way through because that conversation at the end is probably one of the most important conversations we need to be having about people living with cognitive disorders. Let me tell you a little bit more about Dr. Jason Karlawish. Jason Karlawish is a physician and writer. He researches and writes about issues at the intersection of bioethics, aging and the neurosciences. He's author of the recently published book, The problem of Alzheimer's, how science, culture and politics turned a rare disease into a crisis and what we can do about it, his essays have appeared in The New York Times, the Washington Post Forbes, and the Philadelphia Inquirer. He's a professor of medicine, medical ethics and health policy and neurology at the University of Pennsylvania. Dania, and co director of the pen memory center where he cares for patients. Let's jump into the episode with Dr. Karlawish.

Can you start by telling us how you got interested in studying dementia and memory disorders?

Dr. Jason Karlawish 5:16
Sure. Yeah. I mean, in the book I talked about that actually is sort of how I became an Alzheimer's doctor. It's a, it's at the midpoint, actually the book where things start to inflect from, why did it become a crisis to what are we going to do about it, and I, and part of what we're gonna do about as well, we need more Alzheimer's doctor. So I sort of reflect on why I became an Alzheimer's doctor, I was originally going to pursue and I was matched actually to pursue training in critical care medicine and was starting doing that fellowship work. But had become more and more interested in aging during my residency. And during my fellowship work, we were I was assigned to moonlight at a chronic ventilator unit. So these were individuals who were quite sick, dependent upon technology for their very life. And I sort of became fascinated about how is it these mostly older adults, had become so ill and sort of reached this point in what was almost like a high tech nursing home and just began to see a lot of interesting intersections and parallels to the lives of older adults. And that was all very well, interesting academically, but then, personally, I had a major event occurred, namely, my grandfather, who had had dementia fell at home broke, his hip got sent off to a leading urban academic medical center, who repaired the hip with the best of technology, but it was kind of a medical funhouse of madman. And he would ultimately die six months later, of all the complications that would ensue, delirium, etc, I sort of had a wake up call at that point, which is, you know, there's nothing wrong with critical care, we need critical care, certainly COVID has shown us that, but we didn't need more critical care doctors, we needed more doctors are going to take care of people, like my grandfather, never had a clear diagnosis, we sort of just figured things out as best we could, etc. And of course, once he got into hospital, some of the common complications caused by dementia, namely, fall with hip fracture and delirium. And he was at this topflight academic medical center, and he essentially slowly killed him, I decided, I decided to make a change. And so I switched to geriatric medicine, I was the only fellow for three years at the University of Chicago, which was great, I got to do whatever I wanted outside of my training. And so that allowed me to really pursue interests in areas of ethics that I was very interested in. And so that naturally led me to kind of issues around research ethics related to dementia. And to make the long story short, I sort of walked into that topic. And that was 20 some odd years ago, and I've still been working in that area of of sort of ethical issues, as they arise in the care of persons living with Alzheimer's disease, dementia, mild cognitive impairment.

Dr. Regina Koepp 7:59
That really speaks to me, I'm on the Georgia Psychological Association ethics committee. And we also and I'm the only one on that committee who specializes with older adults and I present nationally on actually one of my favorite ethical dilemmas in Alzheimer's care is capacity to consent to intimacy. And, and some of the benefits of intimacy and in the context of dementia disorder, and also some of the risks and challenges if a person is hyper sexual, or so on. So I feel like we're a match made an ethical heaven. Now, now, just for folks who are still learning about dementia, can you give an overview of mild cognitive impairment and how that's different from dementia disorders and Alzheimer's disease?

Mild Cognitive Impairment Vs. Dementia Vs. Alzheimers

Dr. Jason Karlawish 8:50
Yeah, yeah, no. matters of nomenclature, naming this disease are uniquely challenging, which is fascinating given how common it is, compared to all the other top common diseases of aging, cardiovascular disease, cancer, the such spectacular confusion and essentially the whole first part of the problem of Alzheimer's called part one, Alzheimer's on bound is all about, essentially nomenclature, how bad I think told through stories, namely, you know, once upon a time, you had to have dementia to be diagnosed with Alzheimer's disease. Meaning if you didn't have dementia, there's no way you could be diagnosed with Alzheimer's because that describes sort of the presentation of the disease. So what's dementia, disabling cognitive impairments, so someone who previously was cognitively unimpaired has begun to develop slow declines, losses in memory, attention, concentration, executive function language, and their disabling. They can't do their usual everyday activities managing money, transportation, shopping, etc. Long before troubles with bathing, dressing, grooming, that's dimension and that that sort of structure First say they have dementia then decide based on the history and exam that the causes Alzheimer's disease as opposed to Lewy Body disease, Parkinson's disease, normal pressure hydrocephalus, that world work, and that's what I was trained in. And then as I Chronicle in the book, something revolutionary happened in the field, pretty much in a short space of time. Sort of from like 1999 to 2010. You know, that 10 year period, namely, the discovery of this idea that there was a clinical state that described individuals who were not demented, but had cognitive impairment that put them at higher risk of progressing to dementia caused by Alzheimer's. And that was this idea of what has come to be called mild cognitive impairment, known most commonly by its shorthand, MCI, and I Chronicle in the book, The discovery, if you will, the MCI construct by physicians and researchers at the Mayo Clinic. And I point out, I think I made great effort to point out how it really was dependent on the Mayo Clinic's uniqueness that made MCI that discovered MCI. So MCI essentially describes clear changes in cognition noticed by others experienced by the individual detectable on testing, I'll buy it, it's a harder testing set to do than dementia testing, in terms of the subtleties of it. But then just inefficiencies in daily activities. I think that's the key word is inefficiencies, people complain of taking longer, etc. They're not disabled, they're inefficient. Do all people with MCI developed dementia? No, but you're certainly at heightened risk of developing dementia. And then, of course, the story gets more complex as I wrap up, part one, in a chapter called the Olympics of pharmacokinetics, where we began to discover biological ways, ways to measure in life the biological measures of the disease, instead of waiting until people died, which is the story of the biomarker, of course,

What percentage of people with MCI go on to develop dementia?

Dr. Regina Koepp 11:55
now, you mentioned not all people with MCI go on to develop dementia. But do you have a sense of the percentage?

Dr. Jason Karlawish 12:01
Yeah, well, it depends. That's where MCI became tough, because in the hands of skilled clinicians who have the time and resources of a Mayo Clinic clinician, you know, you could see MCI as this 15% per year risk, such that by five years, 50% have transitioned, declined, pick your word from MCI to dementia, the other 50% haven't, what MCI was put out into wider practice, you saw more variable rates of conversion. And a lot of that comes with a subtlety, if you will, the diagnosis and the criteria one uses to decide that there is cognitive impairment, etc. But again, when you look across multiple studies that use reasonably reproducible criteria to define what is mild cognitive impairment, you kind of find this sort of 10 to 15% per year risk that an individual with MCI will decline and have disabling cognitive impairments and meet criteria for dementia. When you think about risk, that's a pretty high risk. I mean, if you told me I have something where I have a 10% risk of getting a disease like Alzheimer's, that's not a trivial risk. It's not an avoidable, but it's not trivial. Yeah.

What can people with MCI do to stave off dementia?

Dr. Regina Koepp 13:19
So say there are people in that MCI range? And if what can they do to prevent that risk or reduce the risk or slow down conversion to demand? Yeah, they're things.

Dr. Jason Karlawish 13:31
Yeah. So you know, it's interesting. In the book, I, you know, make a point of talking about how there's a lot of promise for development of classic pharmaco therapeutics that we think will classic, you know, drugs that will treat Alzheimer's disease, we don't have those drugs. Now, the drugs that are out there for prescription, like the colon Ester, ACE inhibitors have an effect on symptoms. But But I think the field is generally agreed not on slowing down the disease process. And the benefits are subtle, and I detail that in a couple chapters, like hoping to pill the book. But the end of the book, The last part of the book, the fourth part of the book, starts out with a chapter called something's plural must be working. And and what that is about is the fact that despite the fact that we don't have effective pharmacologic treatments for the pathologies that cause Alzheimer's disease, the most common cause of dementia, well done studies, large well done studies in the US and other countries that have been conducted for many years decades even are showing the same consistent finding that over the last 40 years, the risk of developing dementia has been declining, meaning we thought the risk was this but it's actually lower. It's still a risk. And because there are so many older adults, there's so Many people with dementia, but we're not seeing the rates that we thought we would see. And so the question then becomes, well, what's going on? And the answers to that also are very consistent. And I kind of like to summarize it with simply two words, which is access and opportunity. So we see a life course perspective here for reducing the risk of dementia. Access or opportunity, excuse me, starts with education. I mean, there's relentlessly consistent data that individuals who have at least about a high school level of education of quality education of high school level, have a reduced risk of developing dementia later in life compared to people who don't have that quality and length of education, which gets the issues, of course with the quality of education, not just the years of it. That's a consistent finding. And we think that there's a, we've talked about the cognitive reserve hypothesis for that, but also course the opportunity that comes from having an education in terms of social and economic opportunity. That said, the data are also very consistent, that brain health is maintained in individuals who maintain heart health. And across multiple studies, the similar story that you hear that you see is individuals who developed cardiovascular disease, but had access to care, and or otherwise, were able to reduce the risks of cardiovascular disease are in the group of individuals with a lower risk of developing dementia. I think that's very important story in the United States of America, because cardiovascular disease tends to, though not consistently, it tends to be the seasoned sort of more middle aged to older, I'm not saying over build some cardiovascular disease, they certainly do. But the story here then is the ability in middle age to have access to health care, and heart health care really is going to reduce your later life risk of developing dementia. And then a third point is, we've begun to identify a host of activities in life that are associated with a lower risk of dementia, other than in addition to the activities that maintain heart health. And actually, I think a great site to learn more about that as the AARP global Council on brain health, it's a very useful summative assembly of the data around physical activity, social engagement, diet supplements, what do we know? And what is really the evidence to support or not support, whether they actually would maintain brain health and I would recommend to your listeners, the global Council on brain health website to really learn what can I do to maintain my brain health?

Dr. Regina Koepp 17:35
Oh, wonderful. When you were talking about the correlation between heart health and brain health, is that indicated in Alzheimer's disease or vascular dementia?

Dr. Jason Karlawish 17:47
Yeah, it's indicated in all cause dementia. In other words, the studies tend to be agnostic about what is the underlying cause of the dementia, and here's where things start to get complicated. Namely, the borders between where all timer's ends and where vascular dementia begins are not sharp borders. I almost like in an earlier draft of a book that had this idea of the Sargasso Sea of Alzheimer's in the Sargasso Sea. I know it's a sea that lives in the Atlantic Ocean. The guy or the Atlantic gyres article creates the separate body of water. That's very distinct, and it's considered a sea within the Atlantic Ocean, there's no land boundaries, the distinct water in terms of its temperature, color, etc, created by this current. Well, I like to think of like, Alzheimer's is like the Sargasso Sea. It's a very distinct set of pathologies, and around it or whatnot is vascular disease and where one begins and the other ends is a bit porous. And so I guess the point I'm getting at is that the things I was talking about, that are related to vascular health, I think the theory and this is a theory that has been developed is that they're overall maintaining the health of brain cells so that in the setting of the pathologies like Alzheimer's disease, the brains, and this is where things get a little metaphorical but more resilient, if you will, to the presence of pathology compared to someone whose brain cells are not as healthy if you will. That seems to be what the data is pointing us towards.

What are the pros and cons of early diagnosis of dementia?

Dr. Regina Koepp 19:24
Okay, so we're talking about prevention of dementia disorders. Were one one dementia disorder begins and the other end there is a lot of debate in aging among aging groups among dementia groups around the pros and cons of early the benefits of early diagnosis of dementia. Is it helpful for people to know that they are in the early stages of dementia? Is it harmful? Is it causing more anxiety than necessary Does it set us up so we can do things to protect our brain? Can you talk a bit about the pros and cons of early dementia diagnosis or when we diagnose dementia early on in the, in the disease course?

Dr. Jason Karlawish 20:14
Yeah. So without, I'll make one point that I spent a fair amount of time in the book when I talk about why did this disease become a crisis to emphasize that it became a crisis not because simply, there are a lot of older adults, and ages a chief risk factor for developing dementia. But because we have failed to set up a healthcare system that provides people adequate diagnostics, and treatment. And so I think when people have these sort of debates about the value of early diagnosis, I often want to make sure are we having this debate? Because how lousy the system is for care that what's the point of figuring out what's wrong with me? Are we having this debate that even in the setting of a, quote, good system of care, we still wouldn't want to figure it out. So I'd like to focus on the ladder, I'd like to imagine a system where if someone has cognitive complaints, they can get a clear answer to what's wrong with me, and access to the kind of care they need if in fact, they're diagnosed with cognitive impairment. And within that system, I do think that fundamentally, where there's a chief complaint of I've got memory problems, there's a value to identifying them early. Why is that? Because when memory problems become disabling people suffer, they suffer losses and finances, they suffer harvest from medication errors, they suffer harms from a reduced social activity and flourishing in life because they don't go out as much, etc. Those are all harmful to well being. And if someone is identified early in the course of of having cognitive impairment, even at the mild cognitive impairment stage, I would argue that that is their opportunity to begin to organize their life, so that if they are suffering more disability, they don't have the harms of that disability, such as, for example, making mistakes in their finances being scammed abused, exploited, such as having an increasingly narrow social space that causes increasing loss in cognition, loss and well being. I think that those are really very valuable things in In addition, to begin to plan to have, who else will help me let live my life the way I want to live, rather than waiting to that stage of dementia, where people lack an awareness of what's wrong, or resistant to help. And for them, and for the people who care about them. You're dealing with endless three alarm fires, because you never really organized that system of care. I think that, to me, those are incredibly morally, ethically and clinically viable interventions. Now, the missing after and all of this, of course, is an effective treatment that a doctor can give like the way they give a stat to say, if you take this, you're going to reduce your chances of having a heart attack or in the case of, of Alzheimer's and related diseases, reduce your risk of getting more having more cognitive impairment. I think once you introduce a treatment like that, you increase I think, the obvious value of early diagnosis. But of course, that even that comes with its own set of challenges, which we can certainly talk about.

Dr. Regina Koepp 23:19
I wholeheartedly agree with you. I also, it seems paternalistic at some level also to withhold an early diagnosis. I mean, isn't it for the family and the person living with dementia to decide...

The healthcare system needs to change to help people with dementia and their families live full and purpose-filled lives

Dr. Jason Karlawish 23:34
I think where there are complaints, they need to be worked up and to have a system and or a culture that says, Oh, you know, until you make a lot of mistakes and whatnot, we're not going to pay attention to it. I think that that's a failure of the system, not an appropriate provision of the care people need. You know, I think where someone says, My memory is not good, I'm worried I'm bothered or I'm worried about my spouse's memory. We need a health care system that gives people the answers they want. And the problem back to my earlier remarks is we don't have that kind of health care system. I mean, the typical as I Chronicle in the book, The typical new patient visited the pet memory center where I see patients is a family that spent 612 months searching for a diagnosis, trying to get answers, you know, the opening sort of introduction to the book, I Chronicle this couple, the Harrisons who, you know, search for one two years to finally get an answer out what's wrong. That's just unacceptable. I mean, the metaphor the parallel would be imagine people showing up but oncologists with anemia, weight loss, etc, having been sort of bounced around from various doctors because they couldn't get a clear answer as to why they were having anemia and weight loss from say, a now widely metastatic colon cancer, I mean, we would view that as a acceptable, but that's the situation that we're currently living in with cognitive impairment in older adults, and that just simply has to change. And I lay out in the book what needs to be done to change that.

Dr. Regina Koepp 25:12
I wholeheartedly agree. The other piece is helping the family and the person living with dementia to set up opportunities to spend time together and enjoy each other and share history and stories and family legacies and which you could eventually potentially lose in the dementia disease process and how important that would be for families and in kind of archiving their family history and their loved the significance of that person in the family.

Dr. Jason Karlawish 25:45
Yeah, no, I mean, I I agree with you. And, and, and to add to that, I mean, I talked about in the book, sort of part three, you know, is called living well on the house of Alzheimer's. And, and I deliberately use the idea of the house of Alzheimer's to create this idea of, you know, the idea of what is Alzheimer's and how to live with it, is something we will construct we will create the disease is real, but we create the idea of what it means to live well with this disease or not. And I think it's more not than, than, unfortunately, now in this current time in America. But that living well in the house of Alzheimer's disease means not just living the patient living in that house, but other people, particularly what we would commonly call the caregiver, the family member. And and and, and I lay out and talk about the need to see that when you have a person living with dementia caused by Alzheimer's, you therefore also have to find Who's that caregiver at NASA living with them physically, but but taking care of them, and what do we need to provide them in terms of education, support and training so that they can live well with Alzheimer's disease as a caregiver, not as a patient but as a caregiver?

Dr. Regina Koepp 26:57
Yeah, yeah. And because the disease affects everybody in that family.

Dementia should be seen as a disability that deserves accommodations

Dr. Jason Karlawish 27:03
I quote a family member, you know, who, that I have Alzheimer's, you know, because his role was to, like all it, especially at the memory center, we require, we really want people to come in with someone else. And we can get history from them, you know, we sit down and talk with the daughter or the son, most typically a doctor. How is your mom, dad, father in law doing, you know, we get history from them, we we go over the care plan with them and the patient. Because we know that if you don't have that cognitive wheelchair of a caregiver, the person with cognitive impairments going to have a hard time executing the plan. And, and and following up on the plan. And I like it's a brutal metaphor, but I like to think of caregivers as almost a cognitive wheelchair, you know, so what do we think of wheelchairs as or scooters, but we think of them as something that gives people with physical disabilities access, right? And, and, you know, of course, we would give someone who has paraplegia a device that lets them mobilize Well, for persons living with Alzheimer's disease, the caregiver is what allows them to have access in the mobile lives because it's the caregiver that helps them sort out the complexities of the world. It's the caregiver who says, You know, I will help you transport from place a to b, because you right now, can't use the car safely and or negotiate the distance. But if we get you there, you'll enjoy that. And so we have to start thinking of caregivers, as as sort of as a fairly sophisticated means of providing reasonable accommodations for people who are disabled from cognitive problems, albeit not physical problems. And they deserve the kind of accommodations that we give to disabled people. And I find sometimes when I use that, I find even caregivers will sort of say, I don't think my husband is disabled, but then they'll say, well, but yeah, you're right. I mean, he, if I wasn't there, he couldn't do the bills. And so it's not, and it's not because his hands don't work, you know, that he can't do the bills, whatever type or whatever. It's because when you give them all the complexities of figuring out, it's just a mess of paperwork and confusion, and I help make it not so confusing. And so in that sense, it is a lot like providing reasonable accommodations to someone who can't do something because their hands are working physical, but in this case, it's the hands aren't working because the brain is not able to command them in the right way.

The intersection of ableism and ageism

Dr. Regina Koepp 29:40
And then there lies the intersection of ageism and ableism. Because we have all sorts of biases toward older adults in general, and then folks living with disabilities, you know, in addition, and so that creates a double jeopardy in terms of access to resources, how they're treated, and then if they have other diverse identities that could create other jeopardy?

Dr. Jason Karlawish 30:05
Yeah, no, the stigmas that haunt this disease are profound and awesome. You know, I mean, you've got a disease here where even professionals, you know, well meaning people like you and me, will talk about death before death. And, you know, people with Alzheimer's died twice first mind and the body. And so, you know, it's all very well, he, I don't think it's very well to use those kind of metaphors. But but but when you say that kind of metaphor to say you say it, but when a professional, what they're effectively saying is that what people with Alzheimer's are zombies, because they're dead before they're dead. And so, you know, with things like the zombie metaphor out there, you know, talking about Hi, I'm a person who has dementia, I need help, is putting out there a word that now will help people avoid you. And so you know, death before death, etc. And so, the stigmas that surround Alzheimer's are devastating. And in the book, I Chronicle how, you know, even President Ronald Reagan, after he was diagnosed, was suffered stigmas. I mean, I Chronicle how Reagan's former ambassador to the United Kingdom. Walter Annenberg was quoted in the New York Times saying, you know, I prefer remember him as a vigorous fellow, not the way he is now. So I just don't go see him. But what Annenberg was saying was, you know, I'm not going to go see Ron Reagan anymore. So I'm going to avoid him. And in doing that, also, she was avoiding Nancy Reagan, his wife, saying, I'm not going to be with her. So that's why Finally, patients and family members will say, Well, you know, no one comes around anymore. Everyone's kind of avoiding us. And you'll hear this from patients, you know, they don't want to tell people because they know they'll be treated differently. They'll be avoided. There'll be a word, stigmatized, stigmatized.

Dr. Regina Koepp 31:52
Yeah. Yeah, I don't know what to say. And I hear this from mental health providers too. And you know, I love mental health providers, I think we are well meaning. And then there is the fee, you know, we're all in the business of health and healing. And then there's the fear and health healing and social justice, right. And then there's a dementia diagnosis and a person living with a dementia diagnosis. And I would often hear from mental health providers. Well, there's nothing I can do with them because they have a dementia diagnosis, or can they do substance use treatment if they have a dementia diagnosis? And because, because also that if you're using a longtime substance user, you know, your risk is also elevated. And so then in the system I was working with in which is with older veterans, there were higher rates of substance use, and people would often consult with me Can a person with maybe MCI or early stages of dementia benefit from substance use treatment? And I would say we'll give it a try. I mean, they could benefit from prolonged exposure for PTSD. There are all sorts of studies. And they would ask me, Well, what can they learn? And there would be all sorts of questions. And I would say, Well, I don't know, let's meet them and find out. Yeah, no,

Dr. Jason Karlawish 33:05
I like your points well taken, I have a whole chapter in the book called The worlds we create. And it, it's towards the end of the book we're talking about. So what do we need to do as a society, and the worlds we create is taken takes on this idea of well, what are the kind of worlds that we should give an offer to people with dementia, and I kind of push it, you know, not people with mild stage disease, stage dementia, but let's talk about moderate to severe stage where they need, you know, someone with them most of the time or supervising, they might even need to be in a residential setting, as opposed to a community based setting. And I mean, our standard approach to those individuals has been one of, you know, entertain them. I kind of use the metaphor of, you know, kind of, I use the metaphor of a stage, you know, where, you know, we're the actors on the stage, performing and pretending for them in this world that they otherwise just have to watch and be amused in. And I talk about some of the sort of places to even to sort of create elaborate architectural deceptions of, you know, time past settings and whatnot. And what I, I in that chapter I profile and basking, who is a theater, Professor of theatre, and her spectacular innovation, which she chronicles in a book called Creative Care, is how persons with dementia, even persons, you know, who can't remember, episodic memories are still capable of creating, we just have to break that third fourth wall in the stage and bring them onto the stage with us. And, and, and, and, and engage them in activities that aren't just amusement but creative. And I give a concrete example in the book. I mean, the standard problem that persons living with dementia have is later in the disease. Many of them will ask about a debt relative. Yeah, you know, Where's mom, one's mom. Coming home. Now, you know, I think one of the strategies that creative care emphasizes is, is not necessarily to say, well, mother has been dead for 50 years, and the person will be devastated, angry and upset, or to lie to them and say, oh, she'll be coming home in about an hour, you know, and hope that you can move on to something else. But instead, I mean, there's a third way, which is to say, Well, you know, what is about mom that has you thinking about her now? If mom, his mom, were here, what would we be doing with her and sort of CO create with the person with dementia about what's a world with mom like? And I think that that third way opens up the possibility that in living with caring for someone with dementia, it's not just custodial work, or deception, or they just can't do so how can I use them? You know, but rather, how can I be with them and create something out of our engagement with them and, and documents? how, you know, by bringing together persons with dementia, and persons with creative spirit, you can engage in activities that are co creating and meaningful as opposed to mere amusement and distraction. And it's really quite moving as I get. I have a whole chapter called the worlds we create where I talk about that.

Why we need to stop using harmful metaphors (e.g., "zombie, "vegetable") of people living with dementia & value humanity in the context of illness instead

Dr. Regina Koepp 36:14

And the deep connection that's available. Yeah. And honoring the human in there honoring the person in there and their history.

Dr. Jason Karlawish 36:24
Well, yeah, no, it is honoring, and it's, it is bringing out something I mean, look, none of this is intended to be sort of like, Oh, it's all fine. And they're totally, quote, normal, whatever normal is, well, they're not I mean, they have disability, if you just said they're fine, and let them be, they would die. Okay. But but but but the alternative saying, well, they're just dependent and gone. And, you know, let's even you know, a vegetable, what does that leave you with? You know, um, and she Chronicles I talked about, and I interviewed and for the book, and she Chronicles how at one of the nursing home, she was working in doing her creative work, putting on one of the plays that they put on, a policeman came to the nursing home. And he was what I want to come in here, I want to, I want to help, how can I help? How can I be part of this, and, and he tells her the story that his grandfather had died in that nursing home some 3040 years earlier, with dementia, and how he was so mistreated. And it was such a miserable experience in the nursing home that he swore he would never go back to that death house. But now that what he was seeing was something was going on at this nursing home that wasn't so bleak and grim. And he actually wanted to come in and help come back to this place he swore he would never return to. And I think that that kind of connection is so important, because the alternative is one, where we begin to think once you think people are less than persons, if not not persons vegetables, you enter into a very scary world morally about their worth, and their value and what they're owed or not owed. And that is not a world I'm very comfortable living in. And I'm very worried about living in that kind of world, even in a democracy where we think everyone's equal, we should, etc, though, that is a very scary place to occupy culturally.

Dr. Regina Koepp 38:18
Yeah, that is powerful. Yeah, I agree. And the vegetable or the zombie, even that you're dangerous.

Dr. Jason Karlawish 38:26
Yeah, no, I point out in the book, at the end, at the very end of the book, I have a chapter called the worlds we end, and, frankly, is about death. Because in the end, we all do die. And if you've got Alzheimer's disease, you're going to die of that, potentially, not necessarily, if you live long enough, you eat you know, nothing, and other other illnesses and truth. And I'm very bothered, though, about even, you know, the way the pharmaceutical companies advertise their treatments that they're working on for dementia, the images and such that they use are fairly frightening images of you know, there's a one image I point out that Biogen uses in their ad to promote the amyloid theory for their drug that they're under development at acana Mab. And it's this sort of image of a man very still expressionless, and some white liquid that looks like white paint is coming down into his head, and it's covering over half of his face. So his face looks like it's turning into a skull. And the message is just you look at that. And what it's saying is he's half alive flesh and blood, and half a skull. That was the most awful image to show people. You're scaring the hell out of him that he's becoming living dead, you know, because of amyloid accumulating. So we have to start thinking about cleaning up our language and our metaphors here if we're going to have to, if we're going to live with this disease, because, absent the ability to cure each and every possible cause of cognitive impairment, we're not going to drug our way out of this very complicated problem.

Dr. Regina Koepp 40:01
I have to take a breath that is some heavy important. I was just thinking of like the Phantom of the Opera with down and he's like, hidden away in a cave and put him over there. Yeah,

Dr. Jason Karlawish 40:15
In fact, Phantom of the Opera is exactly what it looks like, think of the Phantom of the Opera mask. That's what their image looks like in the ad. And and and that's what they're using to promote take our drugs, so you don't become the Phantom of the Opera. I don't think that that's a very healthy, visual metaphor to put out there. It may sell drugs if the FDA approves it. But I don't think that that's the kind of cultural milieu we would like to talk about treating this disease.

Dr. Regina Koepp 40:43
Well, for many reasons, it's incredibly ablest first, second, it's the degrading of people living with illness, and their families. And in third eye, it's so objectifying of people, and but for the grace of God, go I

Dr. Jason Karlawish 41:05
Look, the larger... the issue I close the book on is short of it, sort of treatments to treat and cure. And, you know, each and every possible cause of cognitive impairment, we're going to have to learn to live with some degree of cognitive impairment. And we have to start to think as a society, what I think is one of the most hot button difficult ethical challenges once we have effective treatments, but they're not cures. And that is that the very same thing we're trying to preserve people's autonomy, someone could arrive at the decision out of their own autonomy, I no longer value, the state of my cognitive impairment, this treatment isn't working anymore, and I want to stop it. And I think all of us, of course, we're going to respect that. But then what's treatment follows that? What what what what how would we care for a person after that when they stopped treatment of slowing the disease? Now, in, in, in the case of diseases that are considered terminal where someone's capable of making decisions and, and taking end of life, at lethal doses of medication through half the states of the Union, half the population of America have access to assisted suicide, physician aid and dying, that's available. But if death before all time, death for Alzheimer's is years away. And in those last year or two, certainly the person is not able to make the decision and exercise. So they don't have access to aid and dying. And so we're we're walking, we're walking our way to a very complicated conversation as a society of, I don't want treatment anymore. I don't want to live into the severe stage of the disease. I want x and what will x be? What will that be? And I don't think we should enter into that conversation, haunted by metaphors of Phantom of the Opera has death before death, etc. Because we're setting ourselves up for the answer being fairly focused on death. So anyway, back to the worlds we create, I think we have to think about how can we create worlds that we create with persons whose dimension despite the severity of their disability so those two chapters worlds we end worlds we create are kind of in a conversation, if you will, about how to live with a cognitive impairment, particularly severe stages of cognitive impairment.

Dr. Regina Koepp 43:43
And how much we're valuing people and and helping them feel a sense of value in worse when when their brain changes and reflecting as you were talking about, there was a psychologist who had Alzheimer's disease to her last name is Bem, something like that. Yeah, years ago, and I think there was an article about her in the New York Times or something, but, but she decided to end her life, living with Alzheimer's disease, and she shared with her families and a family members. I think her adult children were against it. I think on the day that she died, she went on a walk with her partner and came home and lay down with him and took her life peacefully. And I think that her adult children talk about in the article coming to terms with that and that they weren't ready, but then they disagreed at one point and they agreed at another point and just how complicated it is. Yeah,

Dr. Jason Karlawish 44:41
yeah. I actually mentioned Sandy Bem, as well as in the book Still Alice, the character, it's a fiction book, she attempts suicide, but her system she set up doesn't work. She's too impaired to implement the system she set up. And I talk about a patient of mine who had mild cognitive impairment caused by Alzheimer's disease, and was picking up more and more cognitive problems from her day to day function. And she she ended her life. And I think, you know, I have to, it's interesting, when those are all it's very interesting, those are all stories typically of women, typically middle upper middle class, highly educated. So it's a very interesting kind of set of characters there. And none of my remarks should be construed to be critical of that. But I think we have to think about where what what stance, what position are they taking, where are they standing with that and where many of them are standing are, I fought so hard to be where I am in life? Okay, Sandy bem, her story is very interesting. She, early in her career took on the role of an activist to try and use the science of psychology, to read our culture of the biases that were woven into it around what women could and could not do. So for example, her research was instrumental in a Supreme Court case, that ruled that you could not list in a newspaper, job separately for men and women. Once upon a time, newspapers would have jobs for men and jobs for women. And she used her science to show without getting into the details, that that was essentially a biased approach. And the Supreme Court ruled you couldn't list jobs separately for men and women. So I get the position of someone like Sandy Bem, who fought so hard to have her autonomy respected, that a disease that takes away her ability to self determine her life is so dreadful. But I would then hope that in the world we live in now where we don't lose jobs for men and women, where we don't say to a person of color, you can't do that, because your skin is bred. We don't say to someone who has love for some of the same sex, that you cannot have that relationship that that is wrong, I would hope in a world where all those biases are stripped, that we might say. Loss of autonomy is not so dreadful, because we're all here to help preserve each other's autonomy, and value. And so that's kind of, I think, where we need to go as a country culturally, in our next step. And so I respect what Sandy Bem did, but I would like to view it as a cultural moment, in reaction to someone who came from a world that was so hell bent to let her not do what she wanted to do. But we don't I think live in that world. Now, though. We still have tense conversations oddly as a society about that, namely, who can and can't fully realize their ability to live where they want to live, fully exercise their autonomy.

Dr. Regina Koepp 47:46
Thank you so much for this really thoughtful, deep, profound, poignant conversation about we welcome famous disease, dementia, how much we value people, the worst of people, and the society that we You and I, and I think millions of others want to live. Thank you so much. I want to encourage listeners to buy your book. And so for folks listening, the book is called the problem of Alzheimer's, how science, culture and politics turned a rare disease into a crisis and what we can do about it by Jason Carlo wish. So where can people find your book, and learn more about you?

Where to learn more about Jason Karlawish

Dr. Jason Karlawish 48:28
So people can learn about me and my work and my writing? My website jasonkarlawish.com. And we've created a section there actually, I put my writings, not all the essays we've published, but I tried to sort of capture them and explain some of the themes and stuff that it animate in my writing. So many of the essays are sort of collected there. In addition, obviously links to all the made the publisher Macmillan, but obviously all the other places indiebound etc. But the book is available in hardback ebook, and also audiobook and I had a lot of fun with the audiobook actually read the opening and the closing the book, and a wonderful actor read everything else in between. So it's available on all three formats. jasonkarlawish.com, but you know, Amazon, Macmillan, indiebound, Barnes and Noble, etc. So yeah, so it's widely out there.

Dr. Regina Koepp 49:22
Well, I'll link to these, your book and your website in the show notes. And thank you so much for being here. I really appreciate it.

Dr. Jason Karlawish 49:29
Thank you very much, Regina. It's wonderful to be here to thank you so much.

Dr. Regina Koepp 49:35

If you are concerned about a loved one with memory loss, download my free memory loss guide. In it I talk about the signs to be mindful of. I talked about the benefits of early diagnosis of dementia and what to do if you're worried that your loved one is showing some of the signs and symptoms of dementia. So head on over to the show notes and download that free memory loss guide now. That's all for today. Now it's your turn. All you have to do is subscribe, leave a review and share this episode with others so that they can be part of the conversation too. One last thing, a special thanks to Jhazzmyn Joiner, our psychology of aging podcast intern, for all you do. Lots of love to you and your family. Bye for now.