So thank you so much for inviting me to speak here today.
I am indeed a researcher at the Neuroscience, Ethics and Society team at the Department of Psychiatry here in Oxford.
And this is what I'm presenting today, a little bit of work that I've been doing together with Ilina Singh, who's a professor also at the Neurosec
Here in Oxford. And I'm going to talk about what I call towards plasticity of the Mind,
which discusses newish ethical conundrums in dementia care, treatment and research.
I say new ish because these ethical conundrums at their base have been around for quite some time.
If I look at the ethics of ageing and dementia in general,
already Protagoras in the seventh century before Christ had a real piece of literature where you wrote What's the point in life or mortal existence?
Closest, after all, a great length of time to which very fortunately, few of the human species ever arrive.
And we arrive at the imbecility of the first epoch of the infancy.
Similarly, Cicero, in the second century before Christ was talking about that, we ought to fight against that as we would fight any deceits,
much greater care is due to the mind and soul, for they, too, like Lamp's, grow dim with time unless we keep them supplied with oil.
So if you're talking about dementia these days, then an age definition of dementia is the loss of cognitive functioning, thinking,
remembering and reasoning and behavioural abilities such as that to such an extent that it interferes with a person's daily life and activities.
And this includes a number of functions, of course, that impair our ability to keep on going with our lives, as usual.
And it greatly affects our personality as well.
In the end. Now, dementia. Just some quick.
No numbers. It's very prevalent in the world. We're talking about about eight hundred fifty thousand people to a million.
In the UK currently live with dementia and approximately 50 million people worldwide and per year.
About ten more million. We'll get a diagnosis of Alzheimer's disease or vascular dementia or Lewy bodies and so forth.
And I say here are the main causes of dementia.
Are these diagnosis because typically you have a main triggering factor that causes dementia and then in the end,
you will have a sort of a multi morbidity case where you will see symptoms from various conditions intertwined.
Further, we can divide dementia into three stages.
We have early stages, which is rarely discovered, actually, where we're talking about symptoms of forgetfulness,
a losing track of time and so forth, which can be difficult to detect and separate from, as we would say, normal ageing.
And we are middle stage where things get a little bit more severe and we start becoming worried,
and that's usually when we detect these cases of dementia for various reasons.
I find a late stage dementia, which is maybe the stage of dementia, which we mostly think about when we hear the word dementia.
When people have difficulties recognising relatives and friends and have an increasing need for assisted self care and so forth.
And here we also see serious implications for personality and alterations and so forth.
Now, again, I will be talking about new ish ethical conundrums in dementia care, treatment and research.
And I will be mainly talking about three things. And the first part, I will be talking about relational identity, adoption,
paradoxical lucidity and transformative experiences, which are all phenomena emerging from dementia and dementia care.
And the second part of this presentation also talk a little bit about what the implications might be for
a philosophical and ethical frameworks or on dementia and for the practical constraints we have in care.
Looking at these previous three cases or phenomenal.
And then finally, I will make an argument or a case for what I call the plasticity of the mind,
that is an understanding of the mind as having plasticity. Starting then, what part one phenomenon emerging from dementia and dementia care?
I would like to start talking about the role of caregivers. I've coined the term relational identity adoption.
There might be a more correct term to apply to this phenomena. And please let me know in the Q&A.
If you think so. But in essence, it refers to the partial or complete relocation of habit's, intentions and values.
And primarily in the in the direction of from cared for persons, that is, persons with dementia towards caregivers in dementia care.
If we're looking at these three stages, it's easy to think again about dementia at this late stage condition.
However, throughout this time, from early to middle to late stage,
usually you will have a caregiver or several caregivers that are walking alongside you along the way.
Jason Karlo recently said in an interview that we have failed to fully recognise our need for long term care services and supports,
and that Alzheimer's in this case isn't just a cognitive problem.
It's a disability that requires someone else to step in. The caregiver is the accommodation.
And then again, it's not until later in the disease that we're thinking about these things that normally we associate with dementia here.
But for the first two thirds, that is in early and mid stage dementia,
it's about planning a day and staying social and engaged, paying bills, managing finances and so forth.
And during this time, caregivers have increasingly been reporting that they start sort of taking on these habits and these actions as their own.
But for the cared for person. So we're talking everything from what to cook and what to wear a certain day or which TV
programme to watch all the way to deciding who to vote for and making medical decisions.
And what's fascinating about this,
this phenomenon is that caregivers performing these cognitive and emotive and physical tasks are doing it as if they were doing them
for themselves while simultaneously recognising their own preferences and values as distinct from that of the cared for person.
So they are doing it as if they're doing it for themselves by while still being aware that it's
not their own sort of value system that lives behind it or their own intentions and desires.
So that's the first phenomenon that I think raises some issues for how we typically perceive dementia and decision making.
The second one is that a paradoxical acidity and paradoxical acidity.
The term can be, again, contested, but mainly has to do with an episode of unexpected and spontaneous,
meaningful and relevant communication or connectedness in a patient way is assumed to have been permanent,
to have permanently lost the capacity for coherent verbal or behavioural interaction due to dementia or related processes.
So here we are looking at the later stages of dementia.
And I suppose that the term paradoxical is referring to this unexpectedness in that it shouldn't be possible.
We have some examples. So here is a person, a mother that had dementia and didn't really know anyone.
After a while, as happens in dementia, you forget about people in relationships.
But the last 24 hours of her life, she recognised and and talked to loved ones and referred to them specific and said, I love you.
And in other case, a nurse said, you get times where people suddenly seem to perk up just before they die.
They seem to get better. They become coherent. And then they just seem to go.
In The Guardian the other day,
is this to say there was an article published also with a case that I just had to include because it was so explicit about its.
Where the author writes that the next morning she visited Ward with her.
So sort of sorry. And the next morning when she visited, Ward recognised this daughter instantly.
And for the next two days, they spoke. It was as if his mind had been unplugged for so many years.
She remembers. And then all of a sudden, you got to plug it back in again.
Then he lost consciousness. Two days later, he died.
So it's about this all of a sudden inclusiveness or a ability to have a coherent conversation and a new direction with the world,
which in many cases they haven't had for months or years.
So usually this occurs shortly before death. Hence, this kind of phenomenon has sometimes been called terminal lucidity,
and that's I understand the paradoxical acidity more has to do with the sort of loss
of capacities that were typically encounter in dementia and and related conditions,
while terminal acidity more refers to being close to dying for whatever reason and not being able to.
Having conversations and so forth for various reasons.
So in some studies where we're looking at small sample sizes, of course, but in a study using 49 cases,
43 percent of these episodes of paradoxical acidity occurred within the last day of life.
Forty one percent within two to seven days before death. So it's relatively close to death for these people.
If we're looking at the length of these episodes, another study looking at 38 cases,
we could see that most of these episodes last from 30 minutes to a couple of hours.
And looking at how dementia and neurodegenerative diseases specifically such as Alzheimer's,
it's unlikely that spontaneous neuronal regeneration is behind this, right?
It's not that suddenly the brain grows back and we gain these abilities and then we die.
There seem to be something else behind it. So what do patients do in this face again?
They recognise and enquire about loved ones. They partake in coherent conversations, referring to different times in their lives.
And as we could see from that Guardian quote, they appear as themselves.
All of a sudden, even if they haven't done so in a very long time,
what's one case which I read where someone recited poetry from memory all of a sudden a beautiful poem that they had loved,
had loved earlier in their life.
And as I mentioned earlier, these kind of phenomenon phenomena has has been observed in other conditions, such as strokes and tumours and chrome.
But it really challenges, I think, our views of dementia and your degenerative disease that it's we have been giving us this
constant decline on these functions and not a sudden revoking of of those very functions.
The third case or the third set of phenomena?
I want to look at the sort of the frameworks that have started being built around transformative experiences,
transformative experiences in the literature, reference to experiences which are epistemically and personally transformative in some substantial way.
So epistemically transformative in this sense means providing forms of degrees of knowledge and understanding that were previously unavailable.
And more importantly, previous in a previously inaccessible insofar that they depend on having that very specific experience.
So it's impossible to know now what it's like to have an experience before you have had it.
And also that these personal these experiences are personally transformative in that they fundamentally change one's values,
preferences, desires and in some substantive way who we are.
And recently. This has gained a lot of traction, this idea of experiences being transformative in some fundamental sense.
L.A. Paul published a book appropriately named Transformative Experiences,
which really kicked off this debate and mainly saw it as a problem of decision theory.
So you're not. No. It's like to have a certain kind of experience until you've had it.
And so you cannot determine the value of any outcome that involves what it is like for you to have had that experience.
And if you can determine the subjective values of their lives and outcomes,
you cannot compare the values and therefore cannot rationally choose if you would be better off given those values.
More recently, this has been sort of revamped whereat plus previously mainly a problem for decision theory as made the mention
where we're looking at can you rationally decide to become a parent or gain a sensory ability through,
for example, implants or acceptor that Paul uses?
Can you rationally choose to become a vampire, given that it would be a very different way of existing?
We're moving into now different domains and indeed dementia has been mentioned as a possible transformative experience and
that it's impossible for us to know what it is like to be in that state and intimate and safe until you are in that state.
So it's impossible to know what values and preferences you would have in that state until you are in that state,
and therefore the implications of this is like what what value or what weight should we
give to advance directives and other tools and procedures in preparing for dementia?
That is, if I get dementia, I want this to happen and that to happen.
How can rationally make those decisions if we have no idea what it is like to be in that position?
So looking a little bit deeper than that, the implications of these phenomena for philosophical ethical frameworks, but also for care in practise.
We can start looking at personal identity. That is what does it mean to be a person, the same person over time?
If we're look at dementia cases. Relational identity adoption, I think, is perhaps the most obvious one where it's a bit odd.
We're thinking who who is who? A little bit if we can support people's.
Cared for people's ideas and sort of helped them fulfil their their preferences and so forth.
But to what extent is that identity then? What those actions, those of the person in a paradoxical passivity,
we have the problem of someone seemingly disappearing and then coming back again later on before they die.
And transformative experience is perhaps less so a problem for a personal identity than the previous two ones.
But still, it's a question of is that me?
Later in the demented state and can I make those kind of decisions early on for what should happen to me later?
So if I look a little bit more specifically,
a common view of what it means to be a person over time is that in dementia we gradually fade away or wither away.
We will have hear people say things like my mother or father or a spouse is gone long before death, as we saw in some of the quotes from earlier,
that is this person hadn't been herself for several years and just wasn't contactable or
didn't recognise anyone in any meaningful way and couldn't express who they truly were.
But it seems then that. The way some people take on sort of the habits of these people that need to be cared for.
Sorry. You can call that into question.
And more importantly, in a paradoxical lucidity is the question if they're really gone.
If you look at philosophical theory about personal identity over time,
one prominent account is the psychological continuum theory that is that personal identity or will or what matters in persistence,
depending on how you look at it over time, depends upon the psychological connectedness of a person.
In the case of relational identity adoption, we can ask who and what can constitute such a connexion over time?
That is, is it enough that someone is carrying those personal traits or those connexions or
does do those connected connexions need to be carried out by the person themselves?
And then the question is,
how do we explain breaks and connectedness to see if there is no psychological connectivity and then all of a sudden on your deathbed,
you wake up in that sense. And there seems to be a correlation between who you used to be and who you are now.
But in between, there is this black space. How do we explain that?
If we think that what matters in personal identity is psychological continuum of this kind?
It's also a problem for a theory that has gained a lot of traction over the last decades, which is narrative identity theory,
that its persistence is essentially constituted by the ability to, say,
tell a coherent story about one's own life with a beginning, middle and an end.
And the question is here, then. Does it have to be self, is it enough that someone else can be telling the story or fill in the gaps of your story?
Second, can look at coherence without completion, as it were, in in a sense that there is this gap in between and paradoxical acidity.
That is what happens with that story in the middle. Or for that matter, that it is part of your life, maybe that is very coherent.
So some people that sort of have these paradoxical lucidity episodes.
We'll remember very specifically and act within a specific, coherent space of their life.
That is not necessarily the press in time, but some time in the past.
But that whole section is still incoherent and they interact in that universe, as it were, very coherently.
And when it comes to cars, formative experiences, the question is, when do we tell a true story in that sense a coherent story about yourself?
If your writings are the final chapters with your advance directives or what it might be when you are deemed to be competent or fully competent,
or do we tell the story later on when we are in a state which we could previously not access or imagine what it would be like?
Is that what we're telling the true story of our lives? Moving on until the question of autonomy.
That is difficult to imagine how we would, should, would or should understand autonomy distribution in these cases.
More specifically, I mean, if you look at frameworks such as the famous couple and Childress.
Account in biomedical ethics, which is widely referred to and used an action, is autonomous if it is intentional.
Taken with an understanding of that action and is not controlled by an external or restrictive internal conditions.
But the question is, then, who has the intention then who interprets them in the case of relational identity adoption?
And in some cases, it seems also that sort of co intentionality and co understanding that it's that someone
is assisting people with dementia and understanding issues or carrying out intentions,
those kind of actions or those kind of supportive actions are required for not having your external
conditions or your internal conditions and that you have the manager restricting your wishes.
And the question, again, looking at transformative experience is when do we have the right sort of understanding is that when we
don't have not yet suffered the loss of capacities typically associated with dementia before we get it?
Or do we need that transformative experience of dementia to fully understand the situation and the choices we would like to make?
Additionally, if we look at other more perhaps comprehensive frameworks for autonomy.
Joel Fineberg defined capacity, autonomy.
That is the fundamental capacity of rational choices, excluding infants and insane persons and severely retarded,
senile and comatose and including virtually everyone else.
A genuinely incompetent being below the threshold is incapable of making even foolish, unwise, reckless or perverse choices.
And if we're look at these relational identity adoption cases, the question is,
can someone else than ourselves bring us above the threshold in that sense that someone else takes on
these tasks or helps us with the cognitive work to bring us over the threshold and make decisions?
And are we ever truly below the threshold of dementia here?
Feinberg seems to believe that is the case. Looking at paradoxical acidity, that is the question that is.
Are we fundamentally incapable of making such decisions or being competent?
Or is dementia sort of a blanket that lies on top?
Through which we cannot sort of pop up and realise our autonomy and our competence.
And so the question is then, are we truly below the capacity threshold in this sense, or is it more what you later called conditional autonomy?
That is where we are temporarily restricted from exercising our autonomy.
Looking at other values, stress and depression, it's already very common.
And not only the patients with dementia, but all same family caregivers and health care professionals working or and or living
with persons with the mention this uncertainty and the clarity about what is going on.
And so paradoxical acidity, for example. Sort of.
If you add that the ineptness of our frameworks that we have just looked at is likely
to contribute to poor mental health and reduced well-being in those populations.
While if we had good frameworks and good theories to explain what is going on, perhaps we could remedy that somewhat.
If we're looking at practical care implications, relating to that is one question is, of course, who should do what and for whom?
If we accept somehow that other people can support autonomy and maybe even support our identity.
It's the question always who is making this choice? Is it the person with dementia making a choice with the help of a caregiver?
Or is it the caregiver making a choice based on what they think that the person with dementia is trying to say or would like in this situation?
Again, the question about sort of competence comes up.
We're talking about paradoxical acidity and that adults and lucidity imply competence.
I haven't yet come across any studies that sort of investigates to what degree we would call these people autonomous or calm,
medically competent in that sense that they could potentially make decisions for themselves.
But it seems at least not. Impossible that that is the case.
In some cases, in other cases, maybe less so. But in some of these cases, it seems that they are aware enough of the situation.
They are referring to their own condition as being in dementia and dying.
In a way that we could possibly imagine that they could be competent. And in other cases, less so.
So it's difficult to sort of make the distinction there.
And again, looking at their are advance directives, it's difficult to see how we would best respect the autonomy.
Is it best retained through these documents that our advance directives or do we better trust caregivers where that is possible at all,
where there aren't caregivers that have been living with people for a long time?
Or do we dismiss the documents completely in the light of dementia being transformative?
That is like you shouldn't have. You shouldn't put much weight to these documents because when you wrote them,
you didn't have sufficient information about what it's like to be in a demented state.
So that being said, they're moving on to part three, which is more and what I hope to be the constructive part of this presentation.
As I see it, the problem is that Kohlman contemporary theories of what dementia entails in terms of autonomy,
identity and other related constituents of personhood are too rigid to explain and or
allow widely reported phenomena in dementia and dementia care and would allow here,
I mean, in a theoretical sense and not in a legal sense or permit commitments in that sense.
So what I'm leaning toward this is that perhaps the solution would be to allow for these constitutive parts of the self,
such as elements of your personal principles, desires, values and preferences to be relocated and still considered as that of the person.
As long as those elements are in principle, accessible to that person in some intimate and substantial way.
And in this way, move towards an understanding of the mind which entails its plasticity.
It sounds a bit far out there, perhaps, so I thought it could help to relate this, too,
to a number of books and ideas that are already out there that we have observed and that we are accepting to a higher or lesser degree,
obviously, than the idea of the class. Plus, this is the of the mind comes from plasticity in neuroscience.
That is the anatomic and functional changes that the central nervous system is based on.
So the activation of parallel pathways to maintain function within the damaged area,
activation of silent pathways while the formation of new connexions in the brain.
And we are already using this on this understanding of plasticity to to inform our building of brain computer interfaces and deep brain stimulation,
to sort of help the brain repair itself.
That is increasing plasticity through engineering in some sense.
The second concept that it's more of a framework of understanding autonomy and care instead of relational autonomy.
This comes from the care ethics literature. Originally, you were seeing relationships as essential for autonomy, support and retention.
That is, no one can be truly autonomous if there is not others there to respect or sort of support that autonomy.
Suskin Argel wrote in 2015, Framing autonomy as embracing subject intersubjectivity,
the values of mutual respect and all responsible care for the vulnerable as well as allowing autonomy support can
circumvent an essentially individualistic view of autonomy when its strong commitment to safeguard individual autonomy.
So it's not a completely alien idea to sort of not only see autonomy as relational,
but perhaps other constituents of personhood as well, such as identity.
Thirdly, we can look at extended mind theory, which just mainly a philosophy of mind sort of item.
But basically the hypothesis is that cognition can extend beyond the brain
and into the world in general more than being a supporting tool of the mind.
Things like a notebook actively co constitutes that mind.
And most famously, David Chalmers is the proponent of this theory.
And he argues that the notes of a book, for example,
are no less part of your mind than your neurones that would otherwise hold the information that is in the notebook.
And as long as they contain sort of the same information and work functionally the same way.
So in these days,
I suppose the notebook could just as well be a smartphone or laptop or other tools that sort of assist us in cognitive task forces in.
If we imagine that an interest objectivists account of extended mind theory, you would be able to allow mine mine extensions like the notebook.
But not only into items, but between persons, if indeed neurones and cognitive items.
As I call them here. That is notebooks. Smartphones are equally part of my mind as long as they fulfil the same function.
Then why shouldn't the neurones of another person's mind also qualify for the status?
As long as the phenomenal consciousness is left out of the equation,
because we imagine at least that that is something very subjective that cannot directly be shared with others.
And and as long as Condit cognition or access consciousness is what matters.
I don't see any great barrier to take this step.
So the plastic mind, as I envision it, is, and part of this difficult philosophical phrasing,
an entire subjectivist and relational extended mind accounts of personal persistence and dementia.
So this would allow that in progressive dementia as neural networks and neurones become damaged or disrupted or destroyed.
The mind may increasingly relocate substantial elements of its constitution into other vessels if they are neurones, tools or persons.
Doesn't really matter. But they should be somehow performing corresponding functions in some causal way.
I imagine. I put this one in parentheses because I'm not entirely sure if causally is the most important connexion between them.
But it seems as if there seems to be a role that needs to be a relationship between why, for example.
Someone is voting a certain way and or performing a certain task.
That is because it is a intention that I would have had otherwise or that I have but cannot sort of act upon.
So it needs to be I my intentions or my desires need to be the reason for this happening, this function taking place.
And this way of looking at the mind in dementia specifically could make paradoxical acidity
less of a problem in terms of understanding the apparent sudden retention of personnel.
At least from a philosophical perspective, because it's not that it disappeared and got chopped off and then reappeared.
But it just has been sort of working its way around the fact that it could no
longer remain in the brain or being expressed by that brain at that very moment.
Secondly, it could inform the debate on transformative experiences and help us make sense of how the mind may
change into something beyond what is considered sort of event horizon and progressive dementia.
That is that we don't know what it's like to have dementia before we have it,
and that this happens in a nonlinear manner, which I think is something that is often under emphasised.
When we talk about dementia is the fact that it's not a straight slope down,
but it's goes up and down when it comes to a cognitive functions and emotion, oceans and personality coherence.
And I think the paradoxical acidity is also just an extreme case of this sort of influx and outflux.
Of coherence. Thirdly, it could help us explain what is going on in a relational identity adoption in terms of
caregivers partially taking on the autonomy and identity of persons living with dementia.
So there are still some remaining issues. I think there are. I mean, more than the once on this thing here.
But some of them that I've considered myself are unclarity is about it doesn't help us make this decision decisions about who should make decisions.
I mean, just because we imagine that. People can in principle express the autonomy of a person with dementia.
It doesn't mean that every choice they make will be that an extension of that person's will.
And how do we determine when they should be able to make those choices that those calls?
That's a philosophical problem about who makes decisions. That is,
even if we allow that people can share intentions or someone can take on the intentions of
someone else or desires or preferences of someone else in order to sort of retain their identity.
It's not clear exactly when I make a choice or I make a decision.
For even if I consider it to be sort of in line with what a person with dementia that I'm caring for would have made.
It's not clear who makes the decision. Is it is it mainly then an extension of that person with dementia or is it me making that decision for them?
Or can we both do we both forced form sort of a new mind entity that is a co-op in that sense?
Again, it's not even if it helps, I think, informing the debate on the advance directives.
I don't think it solves the debate. It's not clear exactly how we should understand advance directives in the light of this.
Maybe they should still they could serve a purpose as advisory documents at most or something like that.
But looking at. Transformative experiences.
It's not clear that's plasticity of mind sort of makes the final call if advanced sectors are should be abolished or if we should still keep them.
I think it's somewhere in between there. Well, it's also unclear to me, and I want to stress that,
that it's not clear what impact it has on our view, on other that is non dementia conditions.
If the mind is indeed plastic in the sense, why should it only be plastic and dementia?
I focus on the dementia cases because that is the problems sort that I'm addressing.
But it's not entirely clear to me that that means that that's how we should understand a mine in general.
Or that it's the best way to understand the human mind in general as plastic.
And that is something that I'm happy to discuss in the Q&A afterwards. Finally, and that's something that all philosophers.
I suppose, and many research struggle with this is asking ourselves honestly, if if an idea of the minus S.
Plastic would be available unbelievable to caregivers, health care professionals and patients.
That is the second. Is there any easy way to communicate this to people at how they should understand dementia?
It's through this. That is, you will not just decline straight down,
but actually you could share your your identity and your autonomy with other people in this way and therefore persist over time.
So some concluding remarks. Then again, I I think these are old issues or even if new shapes.
That's why I call them a newish ethical conundrums.
But what's clear to me when we're looking at this recent research leaps, it's an art in need of assessment.
It has serious effects on how we conceive of identity and autonomy and other values in dementia.
And we need to understand this phenomena. And in order to evaluate and act upon them.
Finally again, my account here that I've been drawing up will not solve any of these issues,
but hopefully it can contribute to us moving in the right direction.