What can moments of lucidity teach us about Alzheimer’s?

THEME MUSIC] IRA FLATOW: Hey, it’s Ira, and you’re listening to Science Friday. Watching a loved one with Alzheimer’s or dementia slowly lose their cognitive abilities can be heartbreaking, right? But there’s a very interesting side note. While the person you once knew seems to be slipping away, sometimes people with Alzheimer’s may briefly seem like their old selves again, remember a child’s name long forgotten, or suddenly regain the ability to have a fluid conversation.

So what do these moments of lucidity really mean for the progression of the disease? And what are their implications for those living with the disease and their caretakers? These are questions that Alzheimer’s researcher Dr. Andrea Gilmore-Bykovskyi hopes to answer. She’s an associate professor of emergency medicine and co-director of the Lucidity in Alzheimer’s and Dementia Network– that’s the LEAD Network– at the University of Wisconsin in Madison. Welcome to Science Friday.

ANDREA GILMORE-BYKOVSKYI: Thanks so much for having me.

IRA FLATOW: It’s so nice to have you. So tell me, what got you interested in studying these episodes of lucidity?

ANDREA GILMORE-BYKOVSKYI: OK. Well, I’ll have to try to give you a short version of a long story. You know, I first got interested in dementia because I worked as a nursing assistant when I was an undergraduate, actually, at the great advice of my mother. I wanted to become a scientist, thought I was interested in nursing. And she said, you better go make sure you can do this. And I had a lot of exposure and experience with people living with dementia.

And I think, you know, what really still sticks with me to this day are these moments that some nursing assistants in particular were able to create, not necessarily lucid moments, but just moments that showed me the person in a way that I didn’t always see, showed me their ability to engage in pleasantness, their ability to laugh, to have fun, to have appreciation, things that we might often, societally and sometimes individually, think someone can’t do. So that’s had a lasting impression on me. And I think that that’s the origin of what made lucidity interesting.

IRA FLATOW: That really is an interesting story. Is there a definition of a moment of lucidity in someone with Alzheimer’s, a specific criteria?

ANDREA GILMORE-BYKOVSKYI: Yeah. It’s a great question. Unfortunately, right now, what we’re doing as scientists is studying something for which we lack a definition, which is really challenging. But what we think these are these– as you mentioned, it’s a transient recovery of some type of ability. That’s how we observe it. It might look like improved communication. It might look like someone, all of a sudden, is coherent. They’re understanding what’s going on and responding appropriately. Or they’re doing things they haven’t done in a long time.

And a marker of that often is that it’s really surprising to other people. Having something be defined by what other people think about it is usually scientifically not optimal. So we have a long ways to go in understanding, definitionally, what exactly are these episodes?

IRA FLATOW: So because it’s really not defined, when you study it, you have to create, like, your own definition, right? How are you able to determine when somebody has a lucid episode?

ANDREA GILMORE-BYKOVSKYI: Oh my gosh. It’s such a wonderful and challenging question. It’s one of the things the LEAD Network in particular hopes to stimulate more research about. There are lots of different approaches that different scientists have used to try to address this. And this is one thing the LEAD Network in particular is hoping to really move forward. And in our research, what we do is, we do video observations of individuals who were living with advanced dementia. And we’re very grateful to our participants and to their family members for their contributions to this.

So what this video data allows is, it allows us to have a direct observational record of what someone’s doing, and it allows us to then triangulate different types of data features. So we have trained individuals review these videos. And they generate really concrete computational linguistic measures, which are like, ways to describe someone’s verbal output. We also look at eye gaze and gestures.

And then we bring those raw videos to very knowledgeable informants that the know person. And we ask them questions using what we call a provisional definition. And we even tell them, when we ask them, like, we don’t have a concise definition of a lucid episode, but we think they’re an event, you know, where someone demonstrates abilities that we thought were lost. You know, do you think that that’s what you’re seeing here, essentially?

And we kind of record the response. Then we take them through some more structured questions about what they think they’ve seen. And, you know, it’s really interesting because sometimes we might see something in the video that we think is a really big change, but maybe it’s not too meaningful to a person that knows the individual and is watching it.

But more commonly, what might happen is, maybe we think it’s a minor or a small change, but a knowledgeable informant identifies something very idiosyncratic, very specific to the person that helps them identify this as a meaningful return or a meaningful recovery, because of how unique it is to the person. So what this tells us is that, you know, these are highly individually-specified events, which also makes them really challenging to study.

IRA FLATOW: So the informant that you say is someone who knows the person very well, right?

ANDREA GILMORE-BYKOVSKYI: Yes. And I think that’s another challenge we have, is we have to identify, what are the criteria for being a knowledgeable informant? The field hasn’t decided that either, but really, someone who has an understanding of who they were before or has spent a lot of time with them.

IRA FLATOW: Do they get surprised themselves when they see these videos? Hey, look–

ANDREA GILMORE-BYKOVSKYI: Yes.

IRA FLATOW: –you missed something there. You know?

ANDREA GILMORE-BYKOVSKYI: Oh, absolutely. So, you know, this is what I think, as a nurse and a clinician, is really important about lucid episodes. It tells us that maybe there are things about the disease we don’t understand or things about resilience we don’t understand. But it’s also, you know, these events are really impactful to people that witness them. And that impact can be very positive. People might hold on to these events. They might do very many things to try to recreate it. It could be neutral.

But also, for some people, it’s negative, not because they don’t love that they had this moment, but perhaps what the lucid episode demonstrates conflicts with how they were processing this really challenging experience of seeing a loved one living with dementia. And so let’s say, you know, I think my mother is gone, and I haven’t seen her in seven years, and I’ve just decided she’s not there anymore. And I have this really cogent moment with her that’s deeply personal and is about– not just that she’s cognitively capable, but that she’s my mom and she knows I’m her daughter, and she’s communicating that to me. And maybe she’s communicating her love and care for me.

That is a experience that we, as clinicians and researchers, need to understand how to help people with. But one other thing I want to share, Ira, is, we also that clinicians are surprised by the events. And a lot of clinicians describe, after they might look at an event, saying they’re going to change how they treat someone who’s living with dementia. And I think that’s maybe one of the most important and exciting aspects of what we are discovering so far.

IRA FLATOW: Mm-hmm. So that’s one of the takeaways from this research.

ANDREA GILMORE-BYKOVSKYI: Absolutely. You know, in general, we know that there’s stigma about very many things in our country. And one of those things is Alzheimer’s disease and various types of dementia. As we all are aging– you’re aging. I’m aging. We’re going to have changes in cognition. And some of those changes will be disease based, and some of them will be what we call normal aging.

But, you know, I think with dementia, unfortunately, we treat people with this specific condition as though they’re gone. So as clinicians, lots of times, when we’re caring for, for example, older individuals, we might say something like, you know, we assume pain is present if someone has a painful condition. And I think something that we really need to think about a lot more with dementia is assuming the person is present.

There’s– not from a scientific standpoint or an empiric standpoint, but from a humanistic perspective, that when we assume that that person is present, whether we witness or observe a lucid episode or observe indications of what we wish were present or not, that we engage in different actions and that those different actions can create different opportunities for individuals living with dementia to engage in the world around them that may be meaningful to them.

IRA FLATOW: So that’s what caregivers and family members should do themselves– assume the person is present.

ANDREA GILMORE-BYKOVSKYI: I think so, absolutely. And, you know, it’s interesting because I’m speaking to you as a scientist. But that’s the part about this research that personally, for me, is most impactful and meaningful and exciting when I think about the years I’ve spent working with people living with dementia. You know, what is the application, and what does it mean for people?

Because I think there’s a risk of– you know, lucidity is exciting, and it’s important. And we need to understand mechanistically, neurophysiologically, how these events occur. And there is a lot of promise towards understanding that. Is this a change in the arousal system? Is this a mechanism that is triggering, but we’re just only witnessing it in infrequent moments, but people have more capacity and comprehension than we think they do a lot of the time?

And what we should do as scientists is set up strong, competing hypotheses and pursue study designs that allow us to query those hypotheses. But I also think what we need to do is recognize that regardless of what we learn and find, there are individuals, you know, around 7 million of them, living with dementia. And whether they’re lucid or not at different moments in time, this shows us and, hopefully, can inspire and encourage us to think about how we approach them in every single moment, no matter what they’re displaying to us.

IRA FLATOW: We have to take a quick break, but don’t go away. More on this when we come back.

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Do we know what might trigger someone to have a lucid moment after months or years of cognitive decline?

ANDREA GILMORE-BYKOVSKYI: Not yet. And, you know, I think it’s important, Ira, that we, as we’re talking about this, do provide listeners with some general caution that– we’re in really early stages of learning about this. So we’re not really to a stage of looking at mechanisms yet, but there are some hypotheses. Some of them have to do with– maybe there are different social hypotheses. Music is another area of interest. Changes to medications is another area of interest. And there seem to be a subtype of lucid episodes that seem to occur near end of life.

And it’s unclear whether those have a unique mechanism, like, sort of within the neurocircuitry, whether there are some system-level changes that occur as various organ systems are failing, for example. So I think that these are different hypotheses that can all be investigated. I also think that a reasonable hypothesis might be that lucid episodes are– maybe they’re on a continuum with regular cognitive fluctuations, and they’re an extreme end of that continuum. And maybe they share mechanisms.

So when you’re at this early of a stage in researching something, we need to really be open about what might be explaining the phenomenon that we’re observing. So I think it’s premature for us to restrict any of these hypotheses right now. But a real need is for more researchers to get engaged in studying lucidity so we can generate really strong hypotheses with what we know about Alzheimer’s and other pathologies already.

IRA FLATOW: Is there any way– I don’t imagine there is, so I’m asking. Is there’s any way to judge what the lucid person is going through–

ANDREA GILMORE-BYKOVSKYI: Oh, gosh.

IRA FLATOW: –at that moment?

ANDREA GILMORE-BYKOVSKYI: That’s such a great question. That’s another– you know, you’re just generating more and more questions for scientists to answer here.

IRA FLATOW: This is what I do.

[LAUGHTER]

ANDREA GILMORE-BYKOVSKYI: Yes, please.

IRA FLATOW: Sorry.

ANDREA GILMORE-BYKOVSKYI: Generate good work. It’s wonderful. I don’t think so, but, you know, one concept that has been discussed is the concept of meta-awareness. And some have suggested that that is maybe a core feature of a lucid episode. I personally don’t necessarily think it is.

IRA FLATOW: What does that mean? What does that mean, meta-awareness?

ANDREA GILMORE-BYKOVSKYI: Yeah. Meta-awareness is, you know, one’s own awareness and insight, really, into their state, insight into their condition, and insight into their situation. So in some of our work, we’ve received reports from individuals about people experiencing a lucid episode and one case in particular, where whenever the person had the lucid episode, they were very aware of their cognitive impairment, and they were really upset by it. They would say things to their spouse such as, my brain isn’t working, I don’t want to do this much longer.

And this person’s concern was really wanting us, as researchers, to know– stimulating these events may not be good. You know, this isn’t pleasant for my husband. But at the same time, this individual was sharing with them information about their goals of care. But we knew that in this case, there was demonstrated insight and awareness into their condition. Whether we’re always able to observe that or not, I don’t know, but I think it’s a really good question for us to think about.

You know, I think we can probably qualitatively say, if someone’s looking at you and saying, hey, it’s my daughter, it’s my son,and they’re recognizing you and smiling, you know, we might interpret that as experiencing some joy, right?

IRA FLATOW: Right.

ANDREA GILMORE-BYKOVSKYI: But we don’t know whether or not they have insight into whether they were or were not cognitively as present as they appear to be to us in that moment.

IRA FLATOW: Yeah. Is it possible that people with dementia are processing more of the world around them than they are able to communicate to us?

ANDREA GILMORE-BYKOVSKYI: I think it’s a great hypothesis that will require wonderful scientists far beyond the abilities of myself to investigate. And going back to this, assuming the person is present– because there’s a possibility that we don’t understand a lot of things, and we know that they’re human beings, you know– I have a real interest in, let’s– let’s assume that’s the case, whether we find out it’s the case or not.

And I think that’s a really important imperative, that we– you know, Alzheimer’s disease and dementia are horrible. And we know that individuals impacted by this disease have expressed, in various forums, their interest in treatments, their interest in also accommodations, things that support them to engage in life, despite their limitations. And I think these are also really good questions for us to bring to people who are living with dementia, who have mild cognitive impairments, or who have been caregivers to tell us what they care about and how they feel it should be addressed, because they can also tell us things.

And that’s where, you know, while I’m so excited about what we can learn in this field, I want to make sure we don’t, you know, lose sight of the forest, right? And that we don’t forget about the fact that– you know, even if we discover that people aren’t present that much and that these lucid episodes are just really brief snippets, should we treat them any differently?

And I would say we have to make sure that we set up our science with a strong foundation of ethical and humanistic principles that say no. No matter what we learn, we really need to understand that people are present and use this as inspiration to better strengthen and improve the care that they receive, the dignity that they deserve in any moment, for individuals living with dementia for any moment. And we know that they may very often be living in the moment, more than many of us might be.

IRA FLATOW: So fascinating. Thank you so much for taking the time to be with us today, and good luck to you in your research.

ANDREA GILMORE-BYKOVSKYI: Thanks so much.

IRA FLATOW: Dr. Andrea Gilmore-Bykovskyi is an associate professor of emergency medicine and co-director of the Lucidity in Alzheimer’s and Dementia– that’s the Lead Network– at the University of Wisconsin in Madison. This episode was produced by Shoshannah Buxbaum. Did this conversation reframe how you think about dementia and Alzheimer’s? We want to hear from you. Yes. And do you have other scientific questions you want us to help answer for you? Give us a call. Our number, 877-4-SCIFRI. That’s 877, number 4, SCIFRI. I’m Ira Flatow. Thanks for listening.

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