Lucid Episodes: Andrea Gilmore-Bykovskyi & Andrew Peterson

Eric 00:11

Welcome to the GeriPal Podcast. This is Eric Widera.

Alex 00:12

This is Alex Smith.

Eric 00:13

And, Alex, who do we have with us today?

Alex 00:15

We are delighted to welcome Andrea Gilmore-Bykovskyi, who’s a nurse, researcher, and associate professor at the University of Wisconsin. I know her from the Beeson meeting. Andrea, welcome to the GeriPal Podcast.

Andrea 00:28

Thanks. Happy to be here.

Alex 00:30

And we’re delighted to welcome Andrew Peterson, who is a philosopher and assistant professor of philosophy at George Mason University, and I know him through the Greenwall program. Andrew, welcome to the GeriPal Podcast.

Andrew 00:42

Hey, everyone. Thanks for having me.

Eric 00:43

And we’re going to be talking about…I don’t even know what to say. We’ll talk about…what should we call it? Terminal lucidity? Paradoxical lucidity? Episodic lucidity? Something lucidity. And I will ask that question to start off with. But before we talk about lucidity, I think, Andrew, you have a song request for Alex.

Andrew 01:02

Yeah. I Can See Clearly Now the Rain is Gone.

Eric 01:07

Why did you choose that song? And why did you not choose Queensrÿche? Silent lucidity. Do you know, I should have done that.

Andrew 01:15

I would have been way better. I know. I mean, I’m getting dinged right now. You know, I’ve been trying to think of metaphors for thinking about this. This phenomenon for a long time, and it just strikes me that this is one that everybody’s brain goes to, so. Particularly patients, families. So I think that, you know, it just seemed appropriate.

Eric 01:34

Yeah. This morning I actually had to play Queensrÿche for Alex. He’s never heard of the band before.

Alex 01:37

I had not heard that song before.

Eric 01:40

I don’t think many people actually recommend any hard heavy metal music, except for Dan Matlock. He’s the only person.

Alex 01:47

Yeah, Dan does that. Yeah.

Eric 01:49

All right, Alex. I can see clearly now.

Alex 01:56

(singing)

Eric 02:32

That was wonderful. Great song choice. It is actually more appropriate than, I think. A Silent City. Silent Silent City was about, like, dream states. And this is. What is this? What is paradoxical lucidity?

Andrea 02:47

That’s a really big question. I don’t know. You’re opening a big can of worms.

Eric 02:51

That’s a big question.

Andrea 02:53

It’s a big Question. I think, you know, Andrew, you and I probably have different definitional ideas, and I think a lot of these ideas are still a little bit hypothesis driven. We’re still waiting for a lot of data. But I think when I think about lucidity or paradoxical lucidity, I think about these as a transient recovery and some kind of abilities that someone has who’s living with a neurodegenerative condition, like some type of dementia. And it’s this recovery of some type of functional ability, usually communication, when it seems like this is a skill that was long gone.

So all of a sudden speaking incoherent sentences, maybe being able functionally to feed yourself well and swallow well for a meal when you’ve been having dysphagia for years out of nowhere. So that would be how I would describe what lucidity looks like. Andrew could talk about. I think we have ideas about are these paradoxical events, are they expected? And maybe, like, what I think about that has changed over time.

Eric 03:57

Well, maybe we could just. Do you have like a. So when I think about this, like a case, like putting it into perspective of, like, the work that we do every day. We were just had a podcast last week on music and medicine where we talked about Alive inside a video of somebody with advanced dementia. I think it was advanced dementia, Parkinson’s, I don’t know. I didn’t watch the video last week. But, like, waking up after hearing music and like participating music, I think singing along with it and then kind of going back to previous state after the music. Is that what we’re seeing? Could you give another example?

Alex 04:31

And on that podcast, Teresa Allison said, oh, you should have Andrea Gilmore Bokovsky.

Andrea 04:35

Oh, my gosh, that’s good.

Alex 04:36

We said, oh, we’re having her on on Monday.

Andrea 04:38

Yeah, Well, I can give some other examples. And I think Andrew’s going to have good ideas about, like, why the term paradoxical and are these events paradoxical, truly? And I really want to know what he thinks about that. I. I can share another example from some of our research would be, you know, sometimes we have people who retain a new memory and they demonstrate during a lucid episode some new retention of information that’s recent during a time when people, you know, just kind of thought this person was catatonic, didn’t talk, just taking everything in, and then out of nowhere, very spontaneously, you know, interjects into a conversation and demonstrates that they were aware, cognizant, or somehow retained details from another period of time. So that is different because the stimulus is different in that example. And we have a couple of those cases.

Eric 05:30

And Andrew, I remember when I was a med student, I had a patient with a diffuse brain injury in the ICU on a ventilator. Decision was made to transition to comfort care. My memory is a little bit foggy, but I do remember that right before he died, he actually, like, sat up and hugged the family member, then sat down and died for sure. Like, everybody was like, what just happened? Yes, what just happened? And even my recollection, like, did I dream that? Was that a real thing?

Alex 06:05

And, oh, for that family, it was so meaningful.

Eric 06:07

Yeah.

Alex 06:08

And, oh, did they make the right decision?

Eric 06:10

And like, sometimes in our hospice unit, like, we have people who have these periods where they kind of wake up, right? Then they die. This idea of, like, I think it’s called terminal lucidity.

Andrea 06:21

People decide, is that another one? Tell us, Andrew. School us.

Eric 06:25

Yeah, tell us, Andrew.

Andrew 06:26

Yeah, well, I’m like, so I’m a philosopher, so I’m a stickler for definitions. And, like, where, like, how are we going to define this thing and then how are we going to operationalize it? Right? So, like, paradoxical lucidity is a concept that we can define, and then we want to, like, create a definition that we can measure, and then smart people like Andrea and others can go out and do studies and actually detect it in the world. Right? So when Andrea and others and myself and our group were thinking about this stuff and putting in a. Putting in grant applications to study lucidity because an RFA came out for it, that was coupled with a consensus paper of sorts, where a group of people led by Basil Adatta came together and gave this provisional definition of paradoxical lucidity.

And I had to look up the original paper again so I can get the definition. We can start with that. Because the definition, I think, just raises more questions than it actually answers. The way that they define it in this original paper is that an instance of paradoxical lucidity, which this instance, of all the examples that Andrew just described, or even this example of terminal lucidity that you just described, Eric, might fit into it, is classified as such an episode of unexpected, spontaneous, meaningful and relevant communication or connectedness in a patient who is assumed to have permanently lost the capacity for coherent verbal or behavioral interaction due to a progressive and pathophysiological dementing process. It’s a mouthful, right?

Eric 08:07

And a lot of labels that I’m not 100% sure what they mean.

Andrew 08:10

Exactly. Yeah. So this is like. Sounds like you’re. The inner philosopher is coming out on you right now. Right. Because it’s like, what on earth does that even mean? Right.

Eric 08:20

Meaningful to who?

Andrew 08:22

Right.

Andrea 08:22

Meaningful to who?

Andrew 08:24

Yeah. And so that, I think, is like where we started and then trying to figure out how we can take what. Because it seems like. And the clinicians in the room can correct me if I’m wrong, but it seems as though the more folks that we’ve talked to about this, they’re like, oh, yeah, I know exactly what that is.

Alex 08:45

Right.

Andrew 08:45

I see it all the time. But then it’s like trying to actually package a really nice definition so that you can measure it scientifically is pretty hard. And that’s what started the conversation about the theoretical and the empirical conversation.

Eric 09:02

And Andrew, why, again, this seems like in the field of ethics and bioethics, this seems like a rather niche. You can tell me if I’m wrong, like, topic area. How did you get interested in this?

Andrew 09:16

Me, the philosopher in the room?

Alex 09:18

Yeah, the philosopher.

Andrew 09:20

Well, I think there was a guilt by association because I was working with the PEN group on this as well. But my bread and butter work has always been in disorders of consciousness. Folks who have catastrophic brain injuries and are in a vegetative state or minimally conscious state, and then thinking how we can leverage really fancy technologies to determine whether there’s preserved cognition in these folks and whether they’re going to recover.

That’s where I’ve done all of my work. But then when Jason Carloish, one of my mentors through the Greenwall program, talked to me about paradoxical acidity and particularly the experiences of patients, families, I’m like, this sounds so similar. People are patients, families are wondering if their loved one is still in there. And using the same kind of language, the same way of thinking about the minds of the preserved minds or the hidden minds of their loved one because of these conditions. It struck me that there was a lot of parallels that were there, as we found when interviewing patients, families. It’s quite true that people, they’re thinking in these complex ways about the minds of their loved ones in this liminal space.

Andrea 10:35

Yes, they are. I think if someone were to ask me what a tagline is from what I’ve learned in studying lucidity, I would say, like, assume consciousness present, which. Which is a good, you know, in our. In our practice. Something we should think about anyways. Right? Yeah. But I do think that lucidity is offering us this kind of really unique avenue to actually have some empiric investigation around that, because we can capture these events, we can measure communication in really Complex ways. I think one of the challenging things is that we haven’t gotten to yet is taking it from. I think we all. Maybe not universally, but it’s very common for people to know exactly what we’re talking about. And I think this just hasn’t made it into, like, our academic clinical training space.

So when I’ve enrolled people for the study, I had one woman who told me, she was like, oh, I know exactly what you’re talking about. These are windows. I know, like, they come. You know, they’ve come less and less often, but, like, when a window comes, I get my sister, my brother on the phone, and. And she’s like, what do you mean you all haven’t studied this? Like, this is like, the mainstay. This is, like the fruit of the dementia process. I’m here for the windows. And she, you know, it’s very familiar, and I think are the hospice nurses in our study. They know exactly what we’re talking about. They’ve seen the terminal lucidity left and right. They’re like, oh, yeah, that’s the thing that. That happens. And, you know, when happens, we let families know.

This is not, you know, the resurgence of, like, dementia has gone away. That’s not what’s happening here. But I think we just haven’t done it in the scientific realm. And it’s hard because you know how you and I are going to demonstrate lucidity if we do it at some point, if we have dementia or at the end of our lives.

Eric 12:14

I was thinking if I had to demonstrate it during this podcast, because I’m not sure.

Andrea 12:19

I mean, it’s just a good enough question. So I think that’s, like. Because you had asked, you know, meaningful to whom. And I think one of our big conundrums is in a lot of these studies so far, a good number of these episodes are only discernible because people are observing them who have great personal knowledge of somebody, and they’re deriving all this meaning from it that, like, you know, me the clinician, or me, the researcher, I would be like, well, I guess you’re just kind of having a good day.

Like, you’re really feeling yourself today. It, like, looks real good. And they’re like, well, this is really significant. This is, you know, has to do with our personal relationship. And I talk to them about this, and we wouldn’t pick up on how meaningful that is for people. And then I think the flip side of that is we don’t deal with it as clinicians and help them understand how to interpret that information. What does it mean for their progression for their course? And we know from a study Joan Griffin led at Mayo that some family members, it was only around 15%, but it’s not a negligible number, you know, see a lucid episode and they want to make a change to their plan of care or they want to, you know, think about their DNR status. And they’re like, well, maybe I shouldn’t do this because I didn’t know that mom was in there. And this is new news for them and they’re not getting any counseling on how to interpret what they’ve witnessed.

Andrew 13:34

So can I just follow to your point, Andrea?

Alex 13:36

Yeah, yeah.

Andrew 13:37

This is, this has been so. So. Right. Just thinking back to like, particular examples of lucid episodes. And Andrea, you can help me out here. And the Clin. The other clinicians in the room can help me out here too about just thinking of an example. Right. So I think the examples that we’ve seen is an individual will all of a sudden start using humor in a particular way or will using wry humor and that is reminiscent of the kind of humor the person used prior to developing dementia. Or Andrea, maybe you have an example.

Andrea 14:16

As well, like a number of examples about this.

Alex 14:20

Yeah, we love examples, for sure.

Andrea 14:23

So I think this is real, this like personality concordance when people. So in our study, and I’m not going to get into nuts and bolts, but we do video observations. We try to get as much video as we can of people and like, maybe we’ll see a lucid episode. Who knows? Right. And then if we think we see one, we show it to the family members. And usually when people will end up endorsing it and we use similar to this provisional definition Andrew gave. And usually what they’ll say is, they’ll say like, that’s my mom, that’s her. And it’s something very specific about their pre morbid personality.

So we had one participant who had a favorite expletive and like, it just had very, you know, colorful language her whole life and spoke very few words and not even phrases really as, as her baseline. And they had brought in a plush like, stuffed animal and like named it her favorite expletive. And you know, then like months later they’re back visiting and they pick it up, they say like, hey, mom, who is this? And she names it correctly. And they’re just like, in shock that she had picked up on it, that she had remembered it, that she knew. And like, she retained that information for so long, but she does not really Speak. So just the question about, you know, and what this meant for them, like, that’s my mom.

And the way she said it as a joke, like with the eye contact and with her laughter, it meant so, so much to these family members. Like, my mom is here. And it was their suspicion already that their mom was there. But not everybody’s thinking that way. They were like, I know that she’s here. They were so hoping that they were like, I hope she has a lucid episode, you know, like we’ve never seen one. And I wonder if they just noticed because we’re doing the study and we showed, you know, like, what would you think of it differently if you weren’t paying so much attention?

Andrew 16:06

So this is what Andrea is pointing out about this personality concordance is like one of the most fascinating methodological puz puzzles of this whole emerging area of research. Right. So we started with this provisional definition, right? And then you ask yourself, okay, how am I going to write a grant or design this experiment to like detect this stuff in practice? Right. And just as Andrea mentioned, it’s like, well, it turns out the best way to figure out what meaningful communication is, like when we try to cash out what meaningful means in this case is to actually just ask family members, right?

Because they’re the ones that are going to recognize whether that’s mom, right? In the using humor in the way that she used to use humor or not. It turns out they’re the most sensitive instruments in this case. Right. And yet they’re also probably the ones that are most prone to false hope in these cases too. Right. And so you get this methodological double edged sword when you’re trying to sort of sort this out, which is like, how can we try to get reliable information about the presence and distribution of paradoxical lucidity, right. From perhaps the most sensitive instrument that we can get the family members report, while at the same time trying to sort of screen out potential false positives that are due to false hope or something like that. Right.

Eric 17:28

But what if it’s the other?

Andrew 17:29

That’s what fascinates me. Is the philosopher in the room, I.

Eric 17:32

Guess, going to the philosopher, what if, like the other thing you said, spontaneous, like episodic, the definitions, but what if, if the measure is. It’s meaningful for somebody else? I could imagine that people are having lucid episodes all the time, that people may not be, sure, meaningful or are not meaningful for family members, but for the patient inside for a period of time, we’re just not noticing it.

Andrea 17:56

Yeah, I really, you know, My non scientific take that I’ll publicly endorse here is I suspect that people with dementia maybe lose it all the time and nobody knows, you know, and a part of this is to like really inadequately quote Sam Parnia, who’s a critical care physician at NYU. You know, we’re also dealing a little bit with concealment. And if folks like, enjoy. This is a philosophical thing, like reading about personhood or selfhood or like, what does that mean? And there are all these theories about personhood and a part of it is in the dementing process.

You know, it’s not. Maybe part of it is things are lost, Things are progressively lost. They’re not what they were. But also our care processes and how we treat people are actively concealing what could be found. Like we have all of these beliefs and all of our stigma and our preconceived notions and then we reify each other with like, well, she doesn’t do that. When I first started working as a cna, which is how I ever got into dementia, you know, I want to go to nurse school. And I was like, you better make sure you can do that. And I was like, oh man, that’s rough. And one of the first people I ever cared for had dementia.

And everyone was like, she doesn’t talk, she doesn’t, like, she doesn’t do anything. This woman had told me like 500,000 things, like no one ever asked her. You know, there wasn’t an opportunity. So if we had this perspective that something might be present, would we have a different opportunity to see all that’s present and all that could be demonstrated? And you know, maybe some of this isn’t necessarily just what’s concealed, but also what’s expressed. And maybe some of what we’re detecting in lucidity is this capacity for expression. But I think we see from these events where someone integrates new information, that someone can be conscious and retain information, even though their baseline state for years is they don’t even speak in phrases and maybe they can reveal that to you later. And I think if anything should radicalize you as a clinician, it should be like knowing at any minute that that’s possible, like that that could be there. Right.

Eric 19:51

Well, it’s interesting that you brought up like, Sam, because if memory serves me correct, he was the one who did the cpr, right? So what I remember is, is multiple hospitals and they did EEG during CPR during a cardiac arrest. They also, like, I think, showed an image or played something by like audio to see if anybody Remembered it during eg. And I think a fair amount of people who actually survived the survived the rest and were able to talk to afterwards. Therema had waveforms consistent with consciousness during the arrest. I think only one though out of several 500 actually REM remembered like the audio cue or the video cue. But yeah, does that, am I reading remember that?

Andrea 20:37

Everybody else read that and then he had another one. Andrew, you might remember more about it with individuals who I think were maybe in the neuro ICU and they are undergoing resuscitation. And they looked at of those that were resuscitated that said they had a recalled experience of death, which is the scientific term, I think, for near death experiences. Like those people had very active brains while they were dead, which is, you know, I think they’re just all these unanswered questions about consciousness and the boundaries we have around what it means and where it is and isn’t compromised.

And I think Andrew and his colleagues have done a lot of important conjecturing, but like, also like some of that is necessary discourse about should we be thinking about dementia as a disorder of consciousness? Like, what would that mean for our science? And I’m personally much more interested in what would that mean for our care and like our society. If you, you know, thought of dementia as a disorder of consciousness. When someone with dementia goes into the Walgreens and is upset, you know, if you fundamentally believe that, you know, consciousness was present, how could we interact with people differently and how would their lived experience be different?

Eric 21:45

Andrea, so how would you interact differently than if it’s a disease of consciousness?

Andrea 21:51

Yeah, you know, I think that how you interact differently is you presume that while somebody cannot demonstrate to you the understanding and the socially appropriate responses that you understand that they may have a like an invisible capacity to respond to how they’re treated, which I think bears out in so much evidence about person centered interventions. And I think what you did last week with, you know, music and memories, like the prime example, like we all like listening to good music. And you see that when you have the opportunity, sometimes they’re people will be able to demonstrate that they enjoy it. We also know that music can like reduce agitation because maybe people are bored and maybe it’s nice. So maybe you would just have a fundamentally different orientation to their, you know, their real humanity and would think differently about how you want to demonstrate to them that, you know, that they exist and they’re real.

Alex 22:43

Yeah, this is, this is interesting. This is so fascinating to me. It seems like from what I’m hearing today and the little I’ve read about this issue, that there’s like a within person sort of event that happens and maybe it’s a state and it waxes and wanes to some extent. And that’s about lucidity within the person. And then there’s also like a lucid interaction with the family, caregivers, loved ones. Like I read one of your examples of a person with advanced dementia who was like being cleaned on the toilet and then looked at her, I think, daughter, and said, you don’t have much of a life, do you?

And the daughter felt like, seen, heard, understood in that moment was so deeply meaningful to her. That’s an interaction. And there’s like the emphasis on the relational component and what that means in terms of the relationship between the caregiver and the patient and the person. And then there’s also the like pointy headed scientific questions about what’s going on in that person’s brain. And then there’s the philosophical questions about are they conscious? What do we owe them as people respecting their personhood? And do we owe more to people who are conscious than we do to people who are not conscious? So all these layers are just so fascinating to me. Andrew, your thoughts?

Andrew 24:07

Thoughts, yeah. So we sort of just started writing about this and thinking about it without paying much attention to the term lucid or paradoxical, as Andrea brought up earlier. And there was, there was one day that I was having a conversation with, with Jason and I was like, what does it even mean to be lucid? Like, what is it like to be lucid? And what is it like to be the opposite of lucid? Which would be, I don’t know, opacity.

Alex 24:33

Me before coffee in the morning now?

Andrew 24:35

Well, yeah, well, look like that’s exactly that. You know, does it mean that, like you’re just completely drunk, like the kind of. Right. Or you’re, you’re in an.

Eric 24:43

I always thought it was awareness, like you’re aware.

Andrea 24:47

Yeah.

Andrew 24:47

So this is, this is the good point, right? Is that, is that there’s a way in which lucidity is sort of a modifier of consciousness here. Right. And I think Andrea’s point is that look like people who live with dementia, like they may always and already be conscious and we shouldn’t treat them as unconscious. Right. It’s just that there’s this sort of waxing and waning of lucidity that’s there. It’s sort of a clarity or lack of clarity. And then I think that there’s like A There’s another set of questions that we can ask is like, well, what is, what is clear and what is not?

What cognitive functions are becoming lucid and which aren’t right. This is again, it’s a focus, this provisional definition is a focus on communication and sort of relational dimensions or relational connection communication. But just as Andrea mentioned, there’s probably ways in which people become lucid in non relational facets that just like they’re, they, they, they understand where they are. They just sort of, oh, I’m in, I’m in my bedroom, right?

Eric 25:44

Science. Answer this, put on some EEGs, throw them FMRI. Like we can do this, right? With like we’ve been doing it more with people with minimal conscious states. You put them FMRIs, you ask them questions. You can play some music, see what parts of the brain lights up, maybe even see if they can answer questions based on that.

Andrea 26:04

I do think people have done this to like address I’m thinking of, and I hope I don’t get his name wrong and you’d help me, Andrew John Huntley, right. Who is an Exeter. And he’s done this with individuals with severe dementia where he or very advanced shows sort of some very common stimuli and they have appropriate like neurocircuitry responses to seeing that as you would see in other individuals. So I think there are attempts to like answer some of these questions. I think that what gets really challenging is what Andrew’s talking about, which is like we need to somehow differentiate between what’s meaningful to others and what, you know, what might be otherwise clinically significant.

And one of the hypotheses I think we need to test is this idea, like people are really sold that you are on this progressive linear decline pathway. And so many participants tell us, like this is not a linear process and they know that they really experience that, but they’re not coached around it and they’re not sort of prepared with what to expect. But I think that these, some of these lucid episodes really shock people. The shock isn’t always good. It can also be harmful for people and it can be traumatizing. If you thought your mom was gone and all of a sudden it’s like, well, maybe she’s not. But I think there’s this other question of like, what is a lucid episode that’s meaningful and what’s a, like this transient recovery of function idea that maybe people recover the ability to do certain things and like no one really cares.

And I like, I love the example of dysphagia because it sucks you know, choking on your food is painful, causes aspiration pneumonia. But, like, if someone needs a ton of eating and feeding support, and we had this in our study, but then spontaneously of one day, and like, it’s very cognitively complex to eat. You’re using like 52 different muscles to coordinate your swallow, and you’re picking up your food and you’re saying what you want and you’re doing like, is that a lucid episode? I think is a fascinating question. And like, what is allowing you to do that on that day? Like, are you more oxygenated? Did you have a different medication? Like, I think those are other lines of thought that no one cares. You know, I feel like part of.

Eric 28:10

Their brain may be, like, under a lock and key and that they almost find the key to open up that part of the brain. Do we know why? Like, we don’t know why.

Andrea 28:19

No, I mean, I think that’s the signs that needs to happen. Do you think we know why, Andrew?

Alex 28:23

That they.

Andrew 28:24

We know, like, what’s going on in the brain and that.

Eric 28:25

Yeah, like, everybody is asking the philosopher.

Andrew 28:28

In the room to figure that out.

Alex 28:30

I don’t know.

Andrew 28:32

I have. I, you know, look, so to my knowledge, there’s no good evidence of what the underlying mechanism is.

Andrea 28:42

Yeah, I agree with.

Andrew 28:43

But. But I think, you know, one of the things that’s, that’s kind of interesting, speaking to your metaphor of the lock and key, Eric, is that with thinking about lucidity and doing these provisional studies of lucidity, is that we’re coming to understand, like, kind of we have this sort of framework for thinking about the disease itself. Like, it’s, it’s like it, it’s like, are people trapped in there? And. And then they just are like, we’re seeing windows as Andrea, you know, Andrea, metaphor. And then, like, they’re able to peek out through the window, or we’re able to peek in. Or is it the case that there’s a, you know, a sort of a. A variety of different cognitive functions that are under lock and key, as you, as Eric, you just described.

And then it just turns out that they’re able to sort of find the lock one day and open it. Right. I find that as a philosopher, quite fascinating in the way in which lucidity is changing, the way in which we conceptualize the disease and the underlying mechanisms of the disease. Right. And especially if we’re going to start thinking of dementia as a disorder of consciousness, that sort of changes everything quite radically as well. Because now we’re. We’re thinking we’re potentially thinking of people who are having lucid episodes as akin to the kind of experience that a person with locked in syndrome has.

Eric 29:59

Or why? Why not both? Right. Why can’t it be a disorder of consciousness and multiple other aspects? Memory, executive function, everything. It seems like if the brain is really, like, progressing, it’s going to, you know, affect different parts. Part of that could be consciousness, your ability to be aware, awake, as well as memory and other things that maybe some parts kind of. Maybe it is more retrieval issues than some of these memories are still there. What do you think?

Andrea 30:28

I agree with Andrew. I don’t think we know about mechanism, but I do think these studies can be designed now, and I think we can start to look at different, reasonable hypotheses. And I think the most interesting case to look at it is in terminal lucidity. I do think these terminal lucid episodes near end of life, they tend to be much more remarkable. They’re socially a little bit more meaningful to people. We had one in our study that was roughly two days long. They’re really often shocking to people. So one of my questions is, is the mechanism for that different?

And we know that terminal lucid episodes in particular are very common across very many different pathologies and disease states. Near end of life. Like, this is not just a dementia thing. So I would imagine, like, maybe there are some different shared mechanisms. And I think one hypothesis is that you just kind of have this gross system reorganization because you have so much failure that you get like this kind of like the last flicker, right? Like this last rally as. As we describe. And maybe that’s happening.

Eric 31:33

Catecholamines, maybe.

Andrea 31:34

And yes, I. And I think that that’s, you know, in some mouse models, some of, like the hypothesis hypotheses that were advanced, but nothing in humans yet. But I think this is research that could, you know, with adequate infrastructure, like, reasonably be done. But I think in the meantime, the question for us is, what do we, as, you know, average Joes and Janes tell people they should do about this? I think that’s the real. What we haven’t done a good job of yet is like, what does the hospice nurse need to tell the children who witness this so they can interpret this event and, you know, not change somebody to a full code because they’ve seen 10 minutes of something wonderful? And I think that while we know the rates of that happening are probably low, I do worry about, like, no one seems prepared to talk about this. And that seems like a problem.

Alex 32:25

The analogy, I would say Andrew, this goes to your research on people who’ve had devastating brain injuries is we cared for patients like this who’ve had devastating like anoxic brain injury, for example, and family member feels like they’re still responding. You know, this patient’s in probably in persistent vegetative state and yet twitched their finger.

Eric 32:46

They blinked their eyes. Yeah.

Alex 32:47

This was in response. You know, I asked them to do something, they did it, you know, and here you have these lucid episodes and sometimes maybe, you know, we were talking about these sort of difference between the internal lucid episode and what the family witnesses. And you, you mentioned false hope. One of the issues that might come up here is that the family member may be seeing what they want to see, and that’s hard. Andrew, thoughts on the ethical issues that these raise?

Andrew 33:18

Yeah. So false hope is one thing, and you certainly don’t want people to start making sort of rash changes to clinical care based on these sort of, of very short episodes. I think one thing we haven’t mentioned yet is like sort of the length of these episodes and how, how sort of fleeting they are. Right.

Eric 33:39

How long are they usually?

Andrew 33:41

Andrea, what does your data say?

Andrea 33:43

So our, ours are short, you know, and again, this is, we’re in the, we’re in early stages, but I would say like almost all of them are under an hour, like minutes. But again, very significant, like minutes someone will remember for years.

Alex 33:58

Yeah.

Andrew 33:59

So there’s, so there’s a false hope issue. Right. Another issue is like the kinds of miscommunication that you’re going to get with a clinician when you report this to a clinician and then the clinician just sort of writes it off and says, oh, like that was just a blip. Right. Or they used, like that’s just a glitch. Right.

Eric 34:19

I actually had a family member tell me that, like, you actually, if I tell you, you’re just going to notice. Pay attention. But yeah, you have to see it.

Andrew 34:27

Yeah.

Eric 34:27

And see it for you to believe it, because you’re not going to believe it if you don’t see it.

Andrew 34:31

And that’s, you know, from a, like a therapy standpoint, that’s just an issue of validation there. Right. It’s like the family’s feeling validated in the way in which they’re. They’re grieving process and then understanding what’s going on with their loved one and then trying to report that to someone that they respect and then not feeling validated when, when it’s sort of dismissed by a clinician. Right. So that’s another kind of place where it just feels like it gets ethically sticky. So those are two places that we’ve been thinking about it. Andrea, are there any other places that you have been thinking about it?

Andrea 35:04

So I guess I think it’s also helping people understand that this is maybe a normal part of the condition. And that’s where the word paradoxical comes in. Initially, I think when this group, that baseline pulled together, Matt, the idea was like, this is really rare. When we first did our study, we thought this was like, rare disease rare. Like, we’re probably not going to find anything. And I think what we’re seeing from these studies is like, this isn’t actually that rare. So in the survey studies, and I think Andrew and your studies, like most people with longevity and caregiving can require, can recall at least one of these events. And then in the large national survey studies, it’s like somewhere between 60 to 100% recall an event.

Eric 35:45

This is in patients with. Patients with dementia.

Andrea 35:48

With dementia. Yeah. So, you know, that tells me, like, we don’t have good estimates of prevalence yet, but this is not actually that rare. So maybe this is a part of something we should expect people who have these degenerative, you know, disorders to exhibit. And we want family members to know, like, and what do you do when it happens? And what I think we’ve learned from our study is when the lucid episode gets interrupted and derailed, it stops. So, like, one easy recommendation might be, and maybe we want more research, but, like, just let it run, you know, just roll with it. Enjoy this time, enjoy this moment and letting families know that this is a thing that can happen. And like, also, can I ask a question, though?

Eric 36:30

Because, yeah, actually I was talking about this with my son Kai last night, and he was all like, yeah, that, that’s nice. But what if this lucid episode is really scary for them? Is it all like, good lucid episodes or is it ethical?

Andrew 36:47

I think that brings you to yet a third ethical issue too. As Andrea mentioned earlier, not all these episodes are enjoyable. We’ve only looked at this with regard to the experience of the person who witnesses it. So the caregiver. But it’s plausible that it might not be enjoyable for the person experience in it themselves. Right. For the person living with dementia. And so to follow on with Andrea’s comments that, like, we can not only be reactive, to prepare ourselves ethically as clinicians to be reactive in the right kind of way to when these. These episodes are reported to us, but then additionally, we can, we can prepare Patients, families, for the presence of these. Of these episodes and say, look, this may actually be kind of distressing too, so just prepare yourself for it.

Andrea 37:38

Yeah. We published one case report. We actually had someone reach out to us who didn’t know if their spouse was eligible for the study, but they were like, they really, really wanted to talk to us so badly to tell us that their husband would have these occasional instances when he was very aware of. And what he would communicate during this time was essentially like his brain didn’t work, like, he didn’t want any additional measures to prolong his life. Like he was hoping this wouldn’t last too much longer. But it was essentially, you know, it was meta awareness or insight, which is a whole nother can of worms.

And there’s questions about, like, do you have to have meta awareness to have a lucid episode? I don’t. I don’t think you do. But he was having these lucid episodes that were full of insight and the insight was unpleasant for him and. Or the other flip side is it was an opportunity for him to communicate his wishes and say, hey, I’m not enjoying this very much. But distressing for his wife also to, you know, hear that reality.

Alex 38:36

Can I ask to take it a different direction here? I’m gonna go low brow.

Andrea 38:41

Yeah.

Alex 38:41

Did you see the movie the Notebook? And what did you think of it if you saw it?

Andrea 38:45

Boy, it’s been a. Been a minute.

Andrew 38:47

A while ago, been a minute.

Alex 38:49

I remember. So that movie, they’re like, the one person is reading the other person who’s in a nursing home, a notebook about their young lives. And now they fell in love and there was like a love triangle. And at the very end, when I think she gets to the end of the Notebook, he becomes lucid for a period of time, or maybe it’s a he reading it to her, and then she becomes lucid for a period of time, and it’s like, emotionally manipulative and it’s heartbreaking. And I think I cried and I thought, oh, no, this is going to give people false hope.

That in states of dementia, if you just like, you know, say the right things, you can bring them back. Yeah. Find that key to unlock it. Sounds like not a big. Okay, I’ll ask a different question. Any depictions of paradoxical acidity that you’ve seen in media or movies that strike you as accurate, or any links we could provide to YouTube videos or anything like that. Sounds like maybe no off the top of your heads, but if you think of any, send them our way. And we’ll add them to the show notes.

Andrew 39:52

Well, I think that there’s, like, a popular conception that this is like kind of a Lazarus kind of event. It’s like that people just. It’s like it’s back from the dead. Right. But it’s that. And if you witness a lucid episode, it’s going to be so obvious for you to get it right. It’s going to be like night and day. And I think that what I’ve found through our own work and reading the work of others is that it’s so. They’re so subtle and it’s. It’s not like a. Yeah, it’s not like a coming back from the dead kind of event. It’s like. Yeah, it’s not that big hug.

Eric 40:27

When I was a med student.

Alex 40:29

Yeah.

Andrew 40:29

The emotional aspect, on the other hand, is. Is a bit of a Lazarus event is particularly that Have a very profound sort of reaction to it. Whoa.

Andrea 40:39

I totally. I totally agree. And I think, you know, the thing with the notebook as well is, you know, I think there’s this idea that you can stimulate these episodes. And one, they might not all be good, so we don’t want to do that. But two, what we see from our data is that these are transient and I think data from other studies, and they’re spontaneous. So we, you know, have heard from caregivers who are like, I have tried so many times to recreate that day. Like, was it the breakfast? What. Like. And it doesn’t work. So, you know, I think that’s the real misconception. And I totally agree. I think when people hear lucid episode, they’re thinking someone’s, like, gonna be 25 again. Like, that’s not what these look like.

Eric 41:19

So, Andrew, I hear one thing that you’re saying, which is something I was. I learned very early on my career from hospice nurses is preparing family members, you know, for what to expect when somebody’s dying. And part of that is, like, they’re going to be good days, the bad days. Their cognition may kind of wax and wane. They may have periods where they’re awake, but they’re going to spend more and more time sleeping.

Andrea 41:41

Right.

Eric 41:42

When you think about, like, talking to people about paradoxicality and dementia, what are the things that we should be given that it’s actually not uncommon? What are the things I should be saying to those family members to prepare them?

Andrea 41:56

Well, I definitely.

Eric 41:57

Preparing. You’re saying preparing is good, right?

Andrea 42:00

I mean, I. I like to think that giving people more information rather than solely Responding to something happened and what does it mean? It seems optimal to me. I think that probably people could do research about this and that would really be ideal. I think that letting people know that especially in the setting of end of life, that, you know, sometimes people, we don’t really fully understand why and it doesn’t happen to everyone. So, you know, we know like it may or may not happen, but sometimes they, you know, may have sort of a resurgence in, in their energy levels or their communication. And sometimes it feels surprising to people and we don’t know why this happens.

But for some people, this is something that happens. Sometimes they might, you know, talk to you when you don’t expect it and just, we want you to be prepared in case it happens and to know you can just spend that time with them, hear them respond, validate to what they’re saying. And, you know, we’ll. We’re happy to debrief with you if you feel, you know, that would be helpful.

Eric 42:56

And do you ever talk about that? Like, it sounds like a lot of family members try to recreate that experience, but it’s hard to recreate it. Do you ever.

Andrea 43:03

I don’t know that they’re recreatable. I mean, for some of our participants, we have individuals who are in our study for like 18 months, and the number of opportunities that they have the same stimuli and the same opportunity to have the same response is. It seems empirically fairly certain that something. There’s some spontaneous mechanism that must trigger this. So I would certainly, you know, shift. I wouldn’t maybe say, like, oh, don’t do that. I would shift towards, you know, maybe thinking about reek.

Like, instead of trying to make this event happen, think about what parts of that day felt really nice to you and how do you want to get that routine in place so that, you know, you know that you’re supporting a positive day so you’re focusing on outcomes that are in your control. Right. It sounded like, you know, you had breakfast together and that was really nice. Maybe that’s something you want to focus on working in. Like, that’s your goal. Not that you’re going to have breakfast together in a certain way and this event’s going to happen again.

Eric 44:01

Oh, I love that.

Alex 44:02

Okay, I’m going to go sideways again because it’s fun. Like, I was having dinner.

Eric 44:07

Stick to rom coms.

Alex 44:08

Here’s a different sideways. My family loves to make fun of me because when I’m interacting with, like, ChatGPT, I say thank you. That was like, a terrific summary. I appreciate that good job. And my family just laughs at my kids especially. They just laugh and laugh. There’s this great article in the New York Times yesterday about how maybe we should be treating AIs more respectfully because it’s possible they’re conscious. And then, so we were talking about, well, someone’s like, well, what is consciousness? Who’s conscious? Are we conscious? How do we know? Are we living a simulation? All this sort of stuff.

But I wonder if there are so many analogies with AIs here, right? And maybe we have it wrong when we’re thinking about, like, is the AI conscious or not? You know, Sam Altman says, like, there’s 15% chance that it is already, but maybe it’s not that it is or isn’t. It’s that it’s like the lucidity, it runs along the spectrum. And maybe there’ll be moments, right? As it’s rather when we think, like, oh, suddenly it’ll become conscious. Maybe there’ll be moments of paradoxic lucidity.

Eric 45:10

Really took this one sideways.

Andrea 45:11

That is really more of a philosopher question. It’s so for Andrew.

Andrew 45:17

Okay. Yeah, I. I was like, yeah, I’m gonna answer this one, by the way.

Eric 45:21

You got one minute.

Andrew 45:24

So. So look, like there. There’s a difference between asking whether someone, a person living with dementia is or isn’t aware or lucid or not. Right. Or if we’re going to ask about AI, whether it is or isn’t conscious or not. That’s a different question from asking whether I ought to treat them as if they are lucid or as if it is conscious as a precautionary principle. Right. And so it strikes me that in the case of people living with dementia. Yeah. It seems like a pretty good rule of thumb to assume that they might be lucid or they might be conscious or there might be something going on in there. And to treat them as if that’s the case and to interact with them as if that’s the case, because, man, if I didn’t do that, there’d be lots of harm that might befall them.

Eric 46:14

Great answer.

Alex 46:14

Thank you.

Eric 46:15

Okay, I got one last very important question, and this is one’s for you, Andrew. For those who are not on YouTube, Andrew has a sign that says Bikini Kills right behind. I gotta ask. What. What. What does that mean?

Andrew 46:31

Wait, you know, so. So we talked about Queens, right? But you don’t know Bikini Kill, the band?

Eric 46:35

I don’t. I don’t know. Bikini Kill.

Andrew 46:36

Bikini Kill is like the. It’s like the. The like number one riot girl band.

Eric 46:42

Get out of here. Really?

Andrew 46:43

Yeah. Listening. It’s like, it’s like where feminist punk rock came from.

Andrea 46:50

Now you have to do a Bikini Kill song.

Alex 46:51

And I think there is. There’s one of our next guests is listening to this podcast and is getting ideas.

Eric 46:57

Alex, to end our podcast, you can either do right now, do a Bikini Kill song, Queensrÿche song, or I can see clearly now. [laughter]

Alex 47:05

All right, we’ll see what happens.

Alex 47:11

(singing)

Eric 47:47

Andrew, Andrea, thank you for joining us on this GeriPal podcast. That was fantastic.

Andrea 47:52

Thanks so much for having me.Thank you.

Andrew 47:53

Thank you.

Eric 47:54

And to all of our listeners, thank you for your continued support.

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