Rethinking The Future Of Dementia Care
Scientists estimate that the number of people living with dementia will triple within the next 30 years, but healthcare systems, policies, and public health measures in the US aren’t prepared to accommodate this growing population. This week, we’re digging into dementia care, and taking listener calls live.
Alzheimer’s is the leading cause of dementia. Ira talks with Dr. Suman Jayadev, a neurogeneticist at the University of Washington School of Medicine, about the biology of Alzheimer’s, and where we stand with treatments.
Then, the conversation turns to the future of dementia care: What are we doing right? What needs to change? And how can we rethink the future of dementia care? Ira speaks with Dr. Tia Powell, the director of the Montefiore-Einstein Center for Bioethics at the Albert Einstein College of Medicine and the author of the book Dementia Reimagined, as well as Dr. Nathaniel Chin, a geriatrician and assistant professor at the University of Wisconsin.
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Dr. Suman Jayadev is a neurogeneticist at the University of Washington School of Medicine in Seattle, Washington.
Dr. Tia Powell is author of Dementia Reimagined, and a bioethicist at the Montefiore Health Systems and Albert Einstein College of Medicine in New York, New York.
Dr. Nathaniel Chin is a geriatrician and assistant professor in the University of Wisconsin School of Medicine and Public Health in Madison, Wisconsin.
IRA FLATOW: I’m going to hazard a guess that almost everybody knows someone affected by Alzheimer’s. It’s a disease that can change the lives of whole families, not just the loved one with the symptoms. And that’s a growing group of people because one study suggests that the number of people living with dementia will triple by 2050.
So we’re focusing this hour on Alzheimer’s and dementia care, and we’re taking your calls, because I know this is something affecting everybody, and it’s something you want to talk about. So first, we’re going to get into how much we know about the disease, where we stand on drugs, then a little bit later in the hour, what the future of dementia care should look like– maybe like those European dementia villages I’ve heard so much about. Is that a good way to go? What do you think?
Give us a call– 844-724-8255. 844-SCI-TALK. 844-724-8255. And just remember, as I always say when we are talking about health, we can’t give you individual medical advice. It is unethical. But we will try to answer your questions as well as we can.
So to start off a quick overview of the mystery of what causes Alzheimer’s disease with my guest, Dr. Suman Jayadev, neurogeneticist at the University of Washington School of Medicine in Seattle. Welcome to Science Friday.
SUMAN JAYADEV: Thank you very much, Flatow. It’s great to be here.
IRA FLATOW: Nice to have you.
SUMAN JAYADEV: Ira.
IRA FLATOW: That’s quite all right. I get my name wrong also, so nothing to worry about. Let’s say that Alzheimer’s is a hundred-piece puzzle. How much of that puzzle do we confidently know we can put together? Have we figured it out?
SUMAN JAYADEV: Oh, gosh. You know, I’d say we probably have two of the corners done.
IRA FLATOW: That’s it?
SUMAN JAYADEV: And maybe one of the edges. But I’d say the pace by which we’re putting those next pieces down is increasing. And I think we’re going to get there in the foreseeable future.
IRA FLATOW: OK, so what–
SUMAN JAYADEV: It is a surmountable problem.
IRA FLATOW: You do believe that?
SUMAN JAYADEV: I do. I honestly do.
IRA FLATOW: OK, so what are the big questions you need to answer or want to answer?
SUMAN JAYADEV: So I think that if our goal is– and I think this is what our goal is– is to create meaningful therapies, some of the big challenges we have are really still at the basics of the biology of the disease. So understanding the mechanism is critical because that’s when we’re going to be able to find the right targets.
I think some of the big challenges with Alzheimer’s disease, in particular, is that it is heterogeneous, and the mechanisms of the disease are diverse, and the cell types in the brain that contribute to keeping your brain functional are many. So there’s a number of implications to that. That also means that there are many areas where something could go awry and cause problems, and that also means that there’s not going to be one silver bullet.
IRA FLATOW: Mm-hmm. What about all these tangles and taus and proteins going on in the brain? Can you clear that up for us? Are they causes or effects, or don’t we know?
SUMAN JAYADEV: So you have put your finger on the problem that is causing a lot of consternation for scientists globally. There are people who are very thoughtful that have quite differing opinions– some that believe that the tangles and the amyloid plaques, and just in case people don’t know, these are proteins that are deposited in people that have Alzheimer’s disease brain in the brain tissue, either between the brain cells or within the brain cells. And those proteins aren’t there typically.
So there is a thought that those proteins are irritating the cells or causing the cells to die, and that’s what helps to promote the progression of disease. There are some folks that believe that those proteins are there during disease, but they’re really more markers of the disease, and they are not the actual problem. And so you can imagine, then, that that leads to differing approaches in terms of, what are the consequences of clearing that protein? Are you really going to get to the actual mechanism of the problem, or are you going to at least remove an irritant?
IRA FLATOW: Hmm. And, well, let’s talk about the progression of Alzheimer’s disease. How does it move? How does it progress?
SUMAN JAYADEV: So there are different ways to think about that. Clinically, we think about it in terms of the degree to which it’s interfering with your daily life, and so people can start to have mild progression of disease, where their thinking isn’t quite how it used to be. It’s not what you’d expect for someone of their age, but it doesn’t necessarily interfere with their daily routine, and so those folks would have what we would call mild cognitive impairment.
When the cognitive change is enough to interfere with their daily life, we call folks demented. In terms of the pathological change in the brain, there is also somewhat of a trajectory. The parts of the brain that are involved with memory– the hippocampus, temporal lobes– those tend to be involved earlier. And then eventually, we start to see that degree of degeneration spreading across other parts of the brain, and that correlates with the degree of cognitive impairment as well.
IRA FLATOW: Now, you are a neurogeneticist. Does that mean that you study the genetic connection to Alzheimer’s? And let’s talk about that. Is it genetic, or is it environmental?
SUMAN JAYADEV: The answer is yes. So there are– we learned long ago that there are rare forms of Alzheimer’s disease that are caused by single gene changes– mutations, we used to call them. Single gene changes– that’s enough to cause Alzheimer’s disease, if you have that one change. And so that’s the type of disease where you can inherit it from your parents. You may then have a 50/50 chance of passing it on to your child. And so that is what we think about when you think about genetic forms of disease– only a single gene.
Now, we know that other forms of Alzheimer’s disease, a much more common form of Alzheimer’s disease– we call it sporadic– still does have a genetic contribution. It’s just a contribution of many different areas of the genome, and each of those areas have very small risk of developing Alzheimer’s disease. So in other words, the type of Alzheimer’s disease that we get when we’re 75 still has a genetic contribution, but it’s much more complex, and it’s a combination of very small risk genes that can tip you over the edge to develop Alzheimer’s disease.
IRA FLATOW: I can see why this is so mysterious, then.
SUMAN JAYADEV: Right, exactly.
IRA FLATOW: About figuring it out. Are there environmental factors that we know of that affect development?
SUMAN JAYADEV: Yes. So we know things– so age is the biggest risk factor. We know that vascular disease, so other health comorbidities, can increase risk for Alzheimer’s disease. Now, there’s a lot of rich investigation going on right now about truly environmental factors, like pollution or other exposures that can increase risk.
And that research is moving, and I’m sure we’re going to be getting more concrete information about that type of investigation soon. But it’s likely environmental, and most importantly, it is likely the combination of your genetic background and how it intersects with your environment as you go through life.
IRA FLATOW: Let’s go to the phones, 844-724-8255. Lots of people want to talk about it. Let’s go to Lily in Chicago. Hi, Lily.
LILY: Yes, hi, Ira. Thank you for taking my call. The reason I’m calling is that I recently signed up for an Alzheimer’s study that’s being done in Chicago.
IRA FLATOW: Right.
LILY: And I was told that in order to participate in this study, I would have to take a blood test to find out if I had the marker for Alzheimer’s. I went ahead. I took the blood test, and they told me in the test results that I do not have the marker for Alzheimer’s.
IRA FLATOW: Huh.
LILY: Yeah. Also, I want to tell you that many years ago, prior to the blood test, I had a CAT scan of my brain, and I was told by the doctors at the Mayo Clinic that I would never have to worry about getting Alzheimer’s. So apparently, there are things in the blood and in the brain that are predictors of Alzheimer’s.
IRA FLATOW: Well, thank you. Thank you for calling. Let’s talk about that with my guest, Dr. Jayadev. What do you think of that? Are there markers?
SUMAN JAYADEV: That is a fantastic question, because I think what you’ve raised is a very important area of research called biomarkers. And so, Ira, you mentioned the amyloid beta and the tau protein in the brain, and that’s one way in which we make the diagnosis. Turns out we can measure those proteins in the blood.
And so there are a slew of investigations that have been reported the last few years that demonstrate that we can reliably detect that amyloid protein in the blood– in the plasma– and use that information to determine if someone really has an Alzheimer’s disease profile or not. And this is a terrific advancement because prior to that, we were able to measure that amyloid beta in living people, but it was through the CSF, which is fluid that has to be gone through a lumbar puncture.
So yes, we can now measure amyloid beta and tau in the blood, and I’m hopeful, and I think the whole field is hopeful, that we’ll be able to use that to really start to tailor both our therapies as well as tailor the clinical trials, such that we’re not bringing in people into clinical trials that aren’t truly at risk for Alzheimer’s disease.
IRA FLATOW: Well, if we don’t know whether those plaques and tangles are a result of Alzheimer’s or a cause or effect, what does that mean that we know the level?
SUMAN JAYADEV: Fantastic question. So I’ll take a step back and say I think everyone feels confident that those proteins are markers of the disease. So if you can say that in people that don’t have Alzheimer’s disease, there aren’t those biomarkers, then at least we know that you can follow that to determine whether or not your medication may remove that protein or not. Whether or not that’s interfering with the progression of cognitive impairment is not clear, but I think it’s fair to say that we all agree there biomarkers.
IRA FLATOW: OK. Before the break, a quick question. There are Alzheimer’s drugs out there– two FDA-approval therapies. One of them was actually not approved by the committee that reviewed it. How effective are these drugs, and should people think they can rely on them to be cured?
SUMAN JAYADEV: OK, another $2 billion question you’ve asked, literally. So I think that these last two trials demonstrated that we can design and execute a trial that demonstrates a drug engages its target and does what it’s supposed to do, which is remove the amyloid plaque. In this recent case, it looked like there was some mild cognitive improvement, and there are thoughtful people who disagree about the significance of that improvement.
But I think it just shows that that armor around Alzheimer’s disease can be broken, that we have reason to think that we can get around this problem.
IRA FLATOW: Joining me now are my guests, Dr. Tia Powell, bioethicist and psychiatrist at the Albert Einstein College of Medicine and author of the book Dementia Reimagined. She’s joining me here in our studio in New York. Welcome to Science Friday.
TIA POWELL: Thank you.
IRA FLATOW: And Dr. Nathaniel Chin, geriatrician and assistant professor, University of Wisconsin in Madison. And we also have Dr. Suman Jayadev still on the line to take your calls and to talk about it. Welcome, all of you, to Science Friday.
NATHANIEL CHIN: Thank you, Ira.
IRA FLATOW: Nathaniel, let’s clear this up early. Alzheimer’s is not the same as dementia, right? It’s just one specific disease.
NATHANIEL CHIN: Wonderful way to start. Absolutely. Dementia is what we call a clinical syndrome, or as I like to say, it’s just a way of describing what someone is experiencing and what others are observing, whereas Alzheimer’s disease is the actual change in the brain that is causing those symptoms.
IRA FLATOW: Tia, let’s talk about what dementia care looks like in the US and the type of care people receive. It’s all over the map.
TIA POWELL: It really is, yeah. There are a huge number of people, maybe even the majority, who meet criteria for dementia and don’t even know they have it. So they cannot be said to be receiving dementia care because they haven’t even had the diagnosis yet. Sometimes that might be OK.
I think when people have multiple chronic illnesses– which is true of the majority of people, actually, on Medicare– it may not make such a difference. But for many, it does make a difference, and they’re not getting that diagnosis in a timely fashion so they can plan and think about what to do and situate themselves and just get a handle on their life generally. It’s their body, it’s their information– I would wish that they would have that.
IRA FLATOW: Do people, just some of them, just don’t even know they have it? They’re lonely at home and have no idea.
TIA POWELL: Absolutely. Many people now don’t necessarily have family members or involved family members. So they go in, they see their doctor from time to time, and the doctor says, how are you? And they go, well, OK. Or I have heart disease, you know, I have diabetes. But you yourself may not be a reliable reporter about your cognitive function. That’s one of the insidious things about dementia. It clouds your own sense of assessment for some people in how they’re doing.
IRA FLATOW: So what kinds of things, then, affect how people are diagnosed and cared for?
TIA POWELL: Well, if you have very obvious memory lapses, for instance, that other people notice. And we all think of dementia– and I always say dementia because that’s sort of the umbrella term, like cancer. We don’t know necessarily which type somebody has. But it may be that if there are very obvious lapses in memory, that comes to their attention or comes to the attention of somebody else. And we all think of dementia as being, oh, she’s losing her memory.
But there are a lot of other things that go into dementia, which is a complicated disease that affects your entire neurologic system. So you might have difficulty physically balancing, walking. At the very end stages of the disease, you will have difficulty eating, and the majority of people at the very end stage of dementia have difficulty swallowing food. So it’s just a wide range of things.
Other people get irritable, or they show, very importantly, a decline in the ability to manage their money. So that’s a terrible symptom, and unfortunately it may come early. It may come before other things. So your loved ones aren’t with you when you’re paying bills, and they may not know that you’re sending $10,000 money orders to foreign nations and doing all kinds of stuff that is not in your best interest.
IRA FLATOW: And you never anticipated that.
TIA POWELL: Yeah.
IRA FLATOW: Yeah.
TIA POWELL: Well, you know.
IRA FLATOW: Yeah. Yeah. Nathaniel, I mentioned earlier that the number of people with dementia, which Alzheimer’s is just one form of, may triple within the next 30 years, and we can hear Tia talking about all the related problems and things that people are not prepared for. Obviously, our medical system is not prepared for that either in the US, is it?
NATHANIEL CHIN: Unfortunately, it’s not.
IRA FLATOW: Why? Why is it not prepared? I mean this is not something that’s just sprung up on us, has it?
NATHANIEL CHIN: No, I would say it’s probably just the lack of foresight in recognizing the needs that come with such a significant diagnosis. As Tia was saying, this is a condition that is not just about your brain, your mind. It is about your personality, your behaviors, your physical function, how you engage with others, how you engage in your environment. And each one of those aspects is going to require help as well as support, and from there, there’s teams of people who would be needed to identify the area of need and then to provide care and support for them.
IRA FLATOW: So this is a public health issue.
NATHANIEL CHIN: It certainly is.
IRA FLATOW: Tia, you are nodding.
TIA POWELL: I am.
IRA FLATOW: In recognition of that. How big a your public health issue, and why is it not getting, if it’s a public health issue, more attention? Because it would require so much money get us ready, that it’s a number that we don’t even want to think about?
TIA POWELL: It’s money, always, but it’s also that this crosses so many domains. I mean, if you think about it, your capacity to manage your money isn’t specifically a medical issue. We didn’t, in medical school, learn how to help people with that. The same with your driving, the same with taking all kinds of risks that adults are allowed to take, including how you handle a gun, which many, many Americans have.
In fact, more than 50% of US households that have a gun in them also have a person with dementia. So this goes way beyond just medical care, and our medical system, as you know, has had a lot to worry about lately. But it’s really a whole community-wide thing. This is how you live your life and what choices you make. So we need broader policies than just medicine can accomplish.
IRA FLATOW: Let’s talk about choices with my next caller, Anne, in Bangor, Pennsylvania. Hi.
ANNE: Hi. Oh, thank you so much for taking my call, Ira. I just want to share, personally, I retired out as a psychiatric family nurse practitioner, and basically since 1975, have on and off been a treatment participant with individuals with various forms of dementia.
And that includes my mother, my grandmother, my uncle, and they each did find some diagnoses. I retired myself out because I became aware of my own cognitive impairment, and did get testing, and was found to have microhemorrhages, and am living now without that level of practice that I used to have, and definitely the level of, I guess you could call it, the executive function.
IRA FLATOW: Mm-hmm.
ANNE: Given the nature of our current state of insufficient medical care for individuals such as myself, knowing that going forward, these new research studies won’t produce for me what [INAUDIBLE], I would like to hear the opinions of others on the right to die or compassionate care for individuals who can make these decisions now that I have made while I am capable of making them. And I’d love to hear the answers.
IRA FLATOW: OK. Dr. Chin, would you like to–
NATHANIEL CHIN: Yes. I appreciate you sharing that story, and I will say, it’s such a complicated issue in that when a person makes these advance care planning documents, they are in a certain state of mind, and they may not know exactly how they would feel in the future. And so that’s one of the arguments for why people are hesitant.
But I will say, the ideal of having autonomy and the right to decide is also something that is being heavily considered. And so you can see me going both ways because it really is something that is being debated and something that each state and each organization is having to consider.
But I certainly believe that this idea of talking about the future, this idea of having these advance care directives and having people that you have in your corner who are going to honor your wish are really critical, regardless of whether or not agree with the right to die and make that decision yourself. The fundamental principles of thinking about the future and having that in place is still critical. The details of it I think are really going to be sorted out as we move forward.
IRA FLATOW: Dr. Powell?
TIA POWELL: I would just add– and I imagine this is why you’re bringing this important topic up– in the US, none of the states that permit aid in dying permit it for people with dementia. The model law that was used to pass those statutes says that you have to have a diagnosis that we expect to be terminal and less than six months, and you have to have decision-making capacity now.
So effectively, that rules out somebody with dementia meeting criteria, unless they also have a diagnosis that’s going to– an additional diagnosis. So your question is very timely. Right now, we cannot do that in the US. And it’s really tricky. I mean, I fully support Dr. Chin’s statement. Advance directives, letting people your values, articulating them– you can do a lot.
You can say, please don’t try to resuscitate me when there’s no reasonable expectation that it will extend my life or improve quality of life. That’s super-important. You can do that today everywhere in the US. So the other one– I don’t know. And I think it’s hard when somebody– it raises really tricky question that are probably more than we can do today.
IRA FLATOW: Anne, have you heard about these dementia villages in France that I talked about– the Landais Village and places like that? Have you thought about those options?
ANNE: Those options are wonderful, and I explored them during my doctoral studies for individuals with developmental disabilities and mental illness. Our country obviously doesn’t handle that category of body, mind, illness, in a manner that meets the needs of the patients. And I know that. I see that. So I’m not going to put myself through that or my family through that, and I do support any advocacy on anybody’s part to expand the ability for us to write our advance directives based on dementia.
IRA FLATOW: Well, I hope we’ve given you some comfort today.
ANNE: Oh, well, I’m glad to get the word out. That’s very comforting. That gives me a job that I accomplished.
IRA FLATOW: Thanks for calling and sharing. Good luck to you.
ANNE: Thank you.
IRA FLATOW: Tia, there’s a stigma around people with dementia– that a person’s a zombie or a burden to others. And as our caller was talking about, she’s worked with a lot of people in her own family this way. How does that affect how we, as a society, treat these people?
TIA POWELL: Oh, I’m so glad you asked that. It’s such an important issue. The illness is about illness– just the biology, what it does to you, how it changes you, and we’re working on that part of it. But the stigma is something we add on top of that burden. It doesn’t have to be there.
So a number of years ago, a young woman I know told me that her parents had lifelong friends that lived right next door, and they had a fence dividing the two backyards. And over decades, the two couples would have dinner together every Friday. And when they learned that the wife in one of those couples had dementia, they stopped those dinners.
Now, I assume these are good, loving people. So I assume that they were frightened. Everybody’s worried about their own mortality. They were getting older. Or maybe they were embarrassed. They didn’t know how to deal with somebody with dementia. Or I don’t know what else, but that story, unfortunately, is common.
So not only do you have the burden– the biological burden, the weight of that– but you have this other one that even people who are not bad people place on you– this sort of avoiding you, not including. And it’s hurtful. And there’s enough isolation and loneliness anyway in our country, and particularly with older people, but then you add this on top of that. People, and even the caretaker, can be completely isolated because nobody will include you anymore. It’s such a shame.
IRA FLATOW: Dr. Chin is a geriatrician. I’ve heard– do you hear stories about how doctors don’t know how to deal with dementia patients?
NATHANIEL CHIN: Yes, unfortunately, one, there’s a stigma among health professionals, which actually was identified in a really important report from Alzheimer’s Disease International. And so it’s not just the community and patients that have this sense of stigma. It’s providers. And along with the stigma is just the lack of knowledge in proper identification of symptoms– full assessments, which often takes a great deal of time and staff and expertise, but even the belief that there are things that we can do.
So there’s still a misconception that there’s not a lot of care options for people living with cognitive impairment. And that, frankly, is not true, and there’s a lot that we can do for quality of life and to maintain independence and function.
IRA FLATOW: Tina in Tucson, before we go to the break, hi. Welcome to Science Friday.
TINA: Yes, can you hear me?
IRA FLATOW: Yes, go ahead.
TINA: Oh, thank you so much. What an honor to talk to you. Yes, I just– well, I just had the thought that as folks get older, they– by the way, my grandfather passed away at age 95 of Alzheimer’s.
IRA FLATOW: Sorry to hear that.
TINA: That was just in December, so it’s fresh. But one thing I was thinking is I know that diet has been linked to progressing, like eating a lot of pasta, eating a lot of rice, breads, things like that. I’ve heard that that’s a big link and can make dementia and Alzheimer’s worse. So I have a question. Is that true, if someone can confirm that for me?
And then secondly, I would just think on a mass scale we have folks living alone in their homes, making these little meals that have a lot of pasta in them and a lot of preservatives, and I just would think that that would be contributing. And I don’t know, I just think on a grand scale how important having our own gardens would be so we can grow our own vegetables, and I’m sure that would make a difference.
IRA FLATOW: Let me–
TINA: Anyway, a couple of questions there. Thank you.
IRA FLATOW: Before the break, thank you. Dr. Jayadev, what about diet?
SUMAN JAYADEV: I think that’s a great question, and of course, a lot of people are interested in it. I’d say that there’s a fair amount of research that the Mediterranean diet can be helpful and protective. We know that there is the brain-heart connection that is borne out in research– animal studies and in human studies– that what we do to keep our heart healthy is good for keeping our brain healthy.
I think those types of avenues are well supported.
IRA FLATOW: And of course we would need more research to study all of these connections.
SUMAN JAYADEV: Absolutely, right. And I think that there is a growing interest in it, and I think any further statements, but yes, we would need to do more work.
IRA FLATOW: Do you think, Dr. Chin, that doctors, when they speak to dementia patients, give them the respect they deserve? Or are they just not– I’ve heard stories about doctors yelling at their patients, as if they could control that.
NATHANIEL CHIN: I think many doctors do, and I think those that don’t, I’d like to believe that it’s just a lack of awareness and understanding. I haven’t seen doctors yell at patients, but what I do see, and what I was trained to avoid in a geriatric fellowship, was actually speaking to the family member. By acknowledging that a person has dementia, the provider is actually excluding the person that’s in front of us and speaking to their care partner or their child, as if the person wasn’t there. And I was trained to completely avoid that and actually address the person–
IRA FLATOW: Interesting.
NATHANIEL CHIN: Who’s front of me.
IRA FLATOW: Interesting. Taking the calls and your tweets, like this one from Misty from Eastern Oklahoma. She says, health care desert– caring for 87-year-old mother. Want to see more dementia villages. Tia, do we want more dementia villages?
TIA POWELL: I certainly do. The one in France was so delightful sounding to me that I would move there tomorrow if I could.
IRA FLATOW: Yet there was some pushback in that article about people who were saying, but we’re putting them in islands. We’re isolating them. That’s maybe not what we want to do.
TIA POWELL: I agree with that also. I think there’s a lot of room for experimentation. We know we haven’t solved the problem of having a lot of different options that are attractive to lots of different people for where and how they should live when they have dementia. I personally would love to see a more multigenerational model, where people are better integrated into a community. So it might be a planned community where you have levels of different care for people with cognitive impairment, and maybe the staff is also housed there, and their little kids.
And maybe there’s a school or a daycare center, which is delightful for most older people that I know. They want to see little kids. Little kids can come visit to them. They can read to each other. So I’d love to see that connection, and I think it helps retain and attract the best health care workers to care for people dementia, because we don’t pay them very well. They don’t get benefits, but housing in a lovely village– that would be great. So I think we can do better.
IRA FLATOW: It’s certainly better than what we’re doing now.
TIA POWELL: Yes.
IRA FLATOW: OK. Nathaniel, what’s your idea on this. As a geriatrician, how do you look at whether that’s a good option or not?
NATHANIEL CHIN: Well, I like Tia’s comment about a variety, because we’re all unique people and we have different preferences and different tastes. And I will say, here in Wisconsin, many people want to live in their home until the very last day. And I honor that, and I try to do the best we can for people to stay home, whether that’s with supports with more caregivers, adult activity centers.
But there is a time when some people may need to be in an environment where there is more support, and the idea of what you guys are talking about is amazing, where we’re actually allowing people to live and exist more freely instead of putting them in our own box of what we think things should look like. And so I think there needs to be a variety of options for people, and the support in each of those environments.
IRA FLATOW: Let’s go to Amanda in Kansas City. Hi, Amanda. Welcome to Science Friday.
AMANDA: Hi. Thank you so much. So I’m a COVID long-hauler, and I was actually in a National Geographic article about exactly this subject last year. I started I stopped driving over a year ago, when I started falling down stairs. And I know that a threefold increase sounds like a lot, but when we take COVID into consideration, that actually seems like a conservative estimate. Was that part of that projection?
And just as a side note, many of us in the long-COVID community have talked about having our own villages like that. We want that. Thank you so much.
IRA FLATOW: Tia, do you know anything about that, or Dr. Chin?
TIA POWELL: I can say I think it’s too soon. There’s so much we don’t yet know about long COVID. We are just working out what symptoms are part of it, how can we intervene, who is more likely to be subject to that kind of long tail of symptoms sticking out? So it is certainly a potential risk. But as far as I know, there’s no solid data on whether or not it increases Alzheimer’s disease and other dementias.
IRA FLATOW: Let’s go to Wendy in Rochester, Washington. Hi, Wendy.
IRA FLATOW: Hi there.
WENDY: Hi. So my father was diagnosed six years ago with Alzheimer’s. It started out with Lewy body dementia, and then it went to Alzheimer’s, and now it’s back to Lewy body dementia. And I’m just curious if your guests could talk about the differences between the two. I know my father had a lot of problems with severe paranoia. So I’m just curious if there is [INAUDIBLE] about Lewy body.
IRA FLATOW: Let me– that leads me to a larger question. Is there a definite diagnosis? Because doctors are looking at the symptoms, right, and then taking blood tests. Dr. Chin, is there a definite diagnosis?
NATHANIEL CHIN: Right now, the diagnosis of Lewy body disease is a clinical one, based on certain criteria and symptoms. I will say, though, there is a huge push in research to find biomarkers of other non-Alzheimer’s diseases, like Lewy body disease. And so I do feel like we are on the cusp of having more of those tests.
They might be spinal fluid related or hopefully blood related, but right now it’s seeing an expert, a neurologist, in particular, who has great experience in seeing individuals with those symptoms. But this example is very prevalent of going back and forth between one etiology and another for cause of dementia.
IRA FLATOW: I have Dr. Jayadev beck again. Doctor, is there a connection between long-haulers and dementia?
SUMAN JAYADEV: Right. So you know, I think there’s very good reason to think that there could be a connection, and there are some recent work that suggests that there may be an increased risk for Alzheimer’s disease. I think we’re still getting the data. But certainly, one of the significant risks for Alzheimer’s disease invokes implication of the immune system and inflammation. And if long COVID has to do with how your immune system changes over time, that’s one clear connection.
IRA FLATOW: Mm-hmm. Here’s a tweet that came in from Eduardo, who says, glad you touched on the need of a geriatrician as you age. My wife and I are 82 and unable to find one in our area of southwest Orlando. This is Florida. Why is that? A zip has 13% over 65, Dr. Chin.
NATHANIEL CHIN: It is shocking. I would think that you would have people going to Florida, especially in the weather that we’ve had in parts of this country. There is just– there’s a dearth of geriatricians. There’s just a huge shortage, that we don’t have the training, we don’t have enough fellows, and we certainly don’t have enough full-time employees or geriatricians.
And right now, the field is torn as to what to do. I will say, we are trying to improve our geriatricians in this country, but also geriatricians teaching primary care providers on the principles of geriatrics.
IRA FLATOW: In the short time we have left, let’s talk about– let me begin with you, Tia, about how we can make the world socially more inclusive and accessible for people with dementia? What do we need to do?
TIA POWELL: That’s such a great question. There are some really wonderful projects, experiments– I’m not sure what to call them– where people are running dementia cafés. So they set up the restaurant, and they may just set aside a night where you can be yourself. You can come here. It’s all right if you– we bring you your order, and you say that’s not what I ordered, and we say it was. We sort of work it out. So setting up public places where we’re welcoming, you can be you– that’s all good.
There’s also– I know in the theater, I went to a fantastic theater performance before COVID that was very inclusive of people with all sorts of disabilities, including tics and shouting and moving around and stuff like that. So that kind of experience where we’re welcoming all sorts of different people means all the world to people, where they’re not feeling shunned, they don’t be embarrassed if they can’t do everything right.
IRA FLATOW: Yeah, and accepting how they view the world. Not telling them how they should view it or how it is, but accepting this is how they view it.
TIA POWELL: Yeah.
IRA FLATOW: And making it comfortable for them to view it that way. So if they want to call a house a car, you don’t get into an argument about it’s not, right? Because–
TIA POWELL: It can be hard to do. I myself was not as good about this as I wish I had been with my mother, where we would get into things, and I say, yeah, I don’t think so. And she’d say, if you say so. And she was teaching me to be more patient.
IRA FLATOW: Because we have to learn these things, right? These are not things that you encounter when you are a young person.
TIA POWELL: Yeah.
IRA FLATOW: Yeah. Nathaniel, I’ve heard that improving quality of life, and I mean being socially connected, happy, that can slow down the progression of Alzheimer’s. Is that true?
NATHANIEL CHIN: I would say that it’s yet to be seen that that actually slows the progression of the disease in the brain, but it certainly enhances a person’s quality of life and potentially, then, their overall experience day to day, where people may notice an improvement in symptoms or slower change in symptoms, slower change in daily function.
And so what matters most, of course, is not exactly what’s happening in the brain but what a person is able to do and the joy that they have each day. And certainly, those things are meaningful, and we see that in people who are active socially and emotionally.
IRA FLATOW: Let’s go to Ankeny, Ohio. Hi. Hi, welcome to Science Friday.
AUDIENCE: Oh, hi. Hi, hi.
IRA FLATOW: Hi there.
AUDIENCE: Can you hear me?
IRA FLATOW: Yes.
AUDIENCE: Hi. I’m a little on the younger side. I’m 32, and so my question is twofold. First, I know that there can be some stigma. We talked about earlier about having dementia and Alzheimer’s. What types of things can I look for in my neighbors or my family members that may help me encourage them to seek care if they themselves may not want to believe, right, or if there’s an ego sort of in the way to not want to go seek care? And the second part of my question is, how important is it to identify early and start treatment early?
IRA FLATOW: Let’s get some answers. Dr. Chin, let me begin with you.
NATHANIEL CHIN: I love this question, and I appreciate being asked. I find that having evidence, and not that you would show this into the person’s face and say, look, look, you’re making mistakes. But denial is very powerful, and so being able to say, well, the other day this happened. And instead of making it about the person, you make it about you and say, I’m worried. I’m concerned this is happening. I would feel better if we could do this, so that they know they’re not alone. And that’s one way of being able to encourage a person to speak to their primary care provider.
And I say that because there are many different causes of thinking change, not all of which are brain diseases and incurable. Other things, like sleep apnea, medications, mood, your thyroid, can affect your thinking ability, and those are all treatable. And I think if people knew that, they might be more willing to be evaluated. But that is a huge barrier, and so being able to encourage people through real-life examples, your support, and this idea of reverse cause I think can be a way to get people to talk to their doctor.
IRA FLATOW: OK. Thanks. Thanks for the question. One thing we can’t overlook here is the importance of caregivers, which is what this young caller says is that they’re going to become after a while. Do we have a good enough job support for them? How do we support these people who have to take a huge burden on? Tia?
TIA POWELL: I wasn’t sure if you were looking at me.
IRA FLATOW: I’m sorry.
TIA POWELL: Sorry.
IRA FLATOW: Yeah, my fault. Sorry.
TIA POWELL: No, no, not at all. This is a very difficult job, and there are a lot of programs, a lot of people who are trying to help those who provide care so that they can keep at it. Because so many people, as Dr. Chin was saying, do want to stay in their home. And to do that, paradoxically, the more you have support available, the more you accept support, the longer you’ll be able to live independently.
But getting that support is really tricky. The vast majority of care for people with dementia is provided unpaid by their family members– family defined broadly. It might be your neighbor, somebody in your faith community. But to do that, to stay with it, to be patient, to never get angry if you have to repeat things, if you have to clean up in some psychological or physical way after various things– that’s really tough.
So the Alzheimer’s Association, some local groups, they’ve done a great job, and actually in some ways, COVID maybe helped us here, because they moved a lot of programs online. So there can be support groups, and then you don’t have to get through the snow and ice and figure out who’s going to take care of your loved one with dementia while you go.
And those support groups can mean all the world for people, with a place where you can express your frustrations and people won’t think you’re a bad person, a place where you can laugh with somebody else who’s faced the same issues, and a place where you can get useful, practical tips of somebody who’s doing this.
So those programs are too few and far between, but they’re getting there, and they’re super-helpful.
IRA FLATOW: That’s good to hear.
TIA POWELL: Yeah.
IRA FLATOW: Dr. Chin, do you see that there is an increase in awareness and a call for more support for caregivers?
NATHANIEL CHIN: I do, and I feel like it goes back to one of your original statements, Ira. People know people who are living with cognitive change or the family member or the caregiver of someone living with cognitive change. And when you see that on the personal side, it raises this awareness that this is happening and that more and more people have it.
And to some degree, it normalizes the fear that we all may experience about our own mortality. But with that comes this push for, how can we help? How can we be a part of this? And I do think there are more conversations related to, how do we support the people supporting those with thinking changes?
IRA FLATOW: Interesting. Tia, I can imagine that one thing that’s really difficult about dementia is when your loved one is in another time and space, right, and they have forgotten who you are. When is it helpful to try and bring someone back to our reality instead of letting them live in theirs, or is it not helpful to do that?
TIA POWELL: That’s such a great question, and I think many people struggle with that. I think it depends on the case. The classic example is someone who’s lost their spouse of decades, and they don’t remember that. It shouldn’t– why on Earth would you go to that person every day and say, your lovely wife Lucy is dead. And the person has to go through that all over again.
If there’s some reason– if they say, I’m waiting for Lucy. Where is she? Then you may need to do something. But a really great caregiver comes up with creative solutions and might say, you know, I don’t see her here. But I know you have a wonderful scrapbook with pictures of you and Lucy together. Let’s go look at that while we’re waiting.
So you don’t want to patronize somebody, but neither do you need to force upon them something that they may not be able to retain and isn’t helpful and useful to them again.
IRA FLATOW: Where can a caregiver go to learn how to do these things?
TIA POWELL: Yeah, so a lot of caregivers– I think these support groups, but there’s also lots of educational materials. We need a lot more we need education. We need support.
IRA FLATOW: Are there organizations that you can go online or to join?
TIA POWELL: Absolutely. The Alzheimer’s Association has some, but there are also local organizations that have a lot of education. The Dementia Action Alliance, I think, has some educational programs.
IRA FLATOW: Because it’s going to change your life as much as it’s changed the patient’s life.
TIA POWELL: Yeah.
IRA FLATOW: Yeah. Possibly even more.
TIA POWELL: Yeah.
IRA FLATOW: Because it may involve getting a lot of your siblings together, or a lot of other caregivers, to cooperate with each other.
TIA POWELL: Yeah.
IRA FLATOW: Well, we have run out of time. I want to thank you all for taking time to be with us today. Dr. Tia Powell, bioethicist and psychiatrist at the Albert Einstein College of Medicine, author of the great book, Dementia Reimagined, and she’s here in our New York studios.
Dr. Nathaniel Chin, geriatrician and Assistant Professor at the University of Wisconsin, and Dr. Suman Jayadev, neurogeneticist at the University of Washington School– neurogeneticist, excuse me, at the University of Washington School of Medicine. And we’ve put together some resources about Alzheimer’s and dementia care for you to visit on our website at sciencefriday.com/alz. Sciencefriday.com/alz.