1 00:00:00,660 --> 00:00:05,730 So thank you so much for inviting me to speak here today. 2 00:00:05,730 --> 00:00:12,750 I am indeed a researcher at the Neuroscience, Ethics and Society team at the Department of Psychiatry here in Oxford. 3 00:00:12,750 --> 00:00:22,360 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 4 00:00:22,360 --> 00:00:27,850 Here in Oxford. And I'm going to talk about what I call towards plasticity of the Mind, 5 00:00:27,850 --> 00:00:35,540 which discusses newish ethical conundrums in dementia care, treatment and research. 6 00:00:35,540 --> 00:00:43,740 I say new ish because these ethical conundrums at their base have been around for quite some time. 7 00:00:43,740 --> 00:00:47,670 If I look at the ethics of ageing and dementia in general, 8 00:00:47,670 --> 00:00:57,840 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? 9 00:00:57,840 --> 00:01:05,790 Closest, after all, a great length of time to which very fortunately, few of the human species ever arrive. 10 00:01:05,790 --> 00:01:10,750 And we arrive at the imbecility of the first epoch of the infancy. 11 00:01:10,750 --> 00:01:20,860 Similarly, Cicero, in the second century before Christ was talking about that, we ought to fight against that as we would fight any deceits, 12 00:01:20,860 --> 00:01:30,770 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. 13 00:01:30,770 --> 00:01:38,000 So if you're talking about dementia these days, then an age definition of dementia is the loss of cognitive functioning, thinking, 14 00:01:38,000 --> 00:01:46,640 remembering and reasoning and behavioural abilities such as that to such an extent that it interferes with a person's daily life and activities. 15 00:01:46,640 --> 00:01:55,640 And this includes a number of functions, of course, that impair our ability to keep on going with our lives, as usual. 16 00:01:55,640 --> 00:01:59,180 And it greatly affects our personality as well. 17 00:01:59,180 --> 00:02:03,190 In the end. Now, dementia. Just some quick. 18 00:02:03,190 --> 00:02:12,100 No numbers. It's very prevalent in the world. We're talking about about eight hundred fifty thousand people to a million. 19 00:02:12,100 --> 00:02:19,090 In the UK currently live with dementia and approximately 50 million people worldwide and per year. 20 00:02:19,090 --> 00:02:26,950 About ten more million. We'll get a diagnosis of Alzheimer's disease or vascular dementia or Lewy bodies and so forth. 21 00:02:26,950 --> 00:02:29,740 And I say here are the main causes of dementia. 22 00:02:29,740 --> 00:02:38,230 Are these diagnosis because typically you have a main triggering factor that causes dementia and then in the end, 23 00:02:38,230 --> 00:02:48,170 you will have a sort of a multi morbidity case where you will see symptoms from various conditions intertwined. 24 00:02:48,170 --> 00:02:52,640 Further, we can divide dementia into three stages. 25 00:02:52,640 --> 00:02:59,120 We have early stages, which is rarely discovered, actually, where we're talking about symptoms of forgetfulness, 26 00:02:59,120 --> 00:03:08,330 a losing track of time and so forth, which can be difficult to detect and separate from, as we would say, normal ageing. 27 00:03:08,330 --> 00:03:13,870 And we are middle stage where things get a little bit more severe and we start becoming worried, 28 00:03:13,870 --> 00:03:20,410 and that's usually when we detect these cases of dementia for various reasons. 29 00:03:20,410 --> 00:03:27,400 I find a late stage dementia, which is maybe the stage of dementia, which we mostly think about when we hear the word dementia. 30 00:03:27,400 --> 00:03:37,780 When people have difficulties recognising relatives and friends and have an increasing need for assisted self care and so forth. 31 00:03:37,780 --> 00:03:45,750 And here we also see serious implications for personality and alterations and so forth. 32 00:03:45,750 --> 00:03:54,310 Now, again, I will be talking about new ish ethical conundrums in dementia care, treatment and research. 33 00:03:54,310 --> 00:04:03,150 And I will be mainly talking about three things. And the first part, I will be talking about relational identity, adoption, 34 00:04:03,150 --> 00:04:09,790 paradoxical lucidity and transformative experiences, which are all phenomena emerging from dementia and dementia care. 35 00:04:09,790 --> 00:04:16,360 And the second part of this presentation also talk a little bit about what the implications might be for 36 00:04:16,360 --> 00:04:24,270 a philosophical and ethical frameworks or on dementia and for the practical constraints we have in care. 37 00:04:24,270 --> 00:04:29,240 Looking at these previous three cases or phenomenal. 38 00:04:29,240 --> 00:04:35,480 And then finally, I will make an argument or a case for what I call the plasticity of the mind, 39 00:04:35,480 --> 00:04:46,000 that is an understanding of the mind as having plasticity. Starting then, what part one phenomenon emerging from dementia and dementia care? 40 00:04:46,000 --> 00:04:52,720 I would like to start talking about the role of caregivers. I've coined the term relational identity adoption. 41 00:04:52,720 --> 00:04:58,300 There might be a more correct term to apply to this phenomena. And please let me know in the Q&A. 42 00:04:58,300 --> 00:05:07,840 If you think so. But in essence, it refers to the partial or complete relocation of habit's, intentions and values. 43 00:05:07,840 --> 00:05:18,190 And primarily in the in the direction of from cared for persons, that is, persons with dementia towards caregivers in dementia care. 44 00:05:18,190 --> 00:05:27,570 If we're looking at these three stages, it's easy to think again about dementia at this late stage condition. 45 00:05:27,570 --> 00:05:31,650 However, throughout this time, from early to middle to late stage, 46 00:05:31,650 --> 00:05:39,150 usually you will have a caregiver or several caregivers that are walking alongside you along the way. 47 00:05:39,150 --> 00:05:48,930 Jason Karlo recently said in an interview that we have failed to fully recognise our need for long term care services and supports, 48 00:05:48,930 --> 00:05:52,650 and that Alzheimer's in this case isn't just a cognitive problem. 49 00:05:52,650 --> 00:05:59,180 It's a disability that requires someone else to step in. The caregiver is the accommodation. 50 00:05:59,180 --> 00:06:05,720 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. 51 00:06:05,720 --> 00:06:12,020 But for the first two thirds, that is in early and mid stage dementia, 52 00:06:12,020 --> 00:06:18,350 it's about planning a day and staying social and engaged, paying bills, managing finances and so forth. 53 00:06:18,350 --> 00:06:31,100 And during this time, caregivers have increasingly been reporting that they start sort of taking on these habits and these actions as their own. 54 00:06:31,100 --> 00:06:39,350 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 55 00:06:39,350 --> 00:06:46,020 programme to watch all the way to deciding who to vote for and making medical decisions. 56 00:06:46,020 --> 00:06:50,460 And what's fascinating about this, 57 00:06:50,460 --> 00:06:58,980 this phenomenon is that caregivers performing these cognitive and emotive and physical tasks are doing it as if they were doing them 58 00:06:58,980 --> 00:07:08,760 for themselves while simultaneously recognising their own preferences and values as distinct from that of the cared for person. 59 00:07:08,760 --> 00:07:14,190 So they are doing it as if they're doing it for themselves by while still being aware that it's 60 00:07:14,190 --> 00:07:23,810 not their own sort of value system that lives behind it or their own intentions and desires. 61 00:07:23,810 --> 00:07:34,500 So that's the first phenomenon that I think raises some issues for how we typically perceive dementia and decision making. 62 00:07:34,500 --> 00:07:40,680 The second one is that a paradoxical acidity and paradoxical acidity. 63 00:07:40,680 --> 00:07:47,070 The term can be, again, contested, but mainly has to do with an episode of unexpected and spontaneous, 64 00:07:47,070 --> 00:07:53,950 meaningful and relevant communication or connectedness in a patient way is assumed to have been permanent, 65 00:07:53,950 --> 00:08:02,430 to have permanently lost the capacity for coherent verbal or behavioural interaction due to dementia or related processes. 66 00:08:02,430 --> 00:08:07,080 So here we are looking at the later stages of dementia. 67 00:08:07,080 --> 00:08:16,280 And I suppose that the term paradoxical is referring to this unexpectedness in that it shouldn't be possible. 68 00:08:16,280 --> 00:08:27,470 We have some examples. So here is a person, a mother that had dementia and didn't really know anyone. 69 00:08:27,470 --> 00:08:32,090 After a while, as happens in dementia, you forget about people in relationships. 70 00:08:32,090 --> 00:08:44,240 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. 71 00:08:44,240 --> 00:08:51,590 And in other case, a nurse said, you get times where people suddenly seem to perk up just before they die. 72 00:08:51,590 --> 00:08:58,660 They seem to get better. They become coherent. And then they just seem to go. 73 00:08:58,660 --> 00:08:59,910 In The Guardian the other day, 74 00:08:59,910 --> 00:09:09,290 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. 75 00:09:09,290 --> 00:09:14,340 Where the author writes that the next morning she visited Ward with her. 76 00:09:14,340 --> 00:09:21,910 So sort of sorry. And the next morning when she visited, Ward recognised this daughter instantly. 77 00:09:21,910 --> 00:09:27,860 And for the next two days, they spoke. It was as if his mind had been unplugged for so many years. 78 00:09:27,860 --> 00:09:32,150 She remembers. And then all of a sudden, you got to plug it back in again. 79 00:09:32,150 --> 00:09:36,410 Then he lost consciousness. Two days later, he died. 80 00:09:36,410 --> 00:09:44,960 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, 81 00:09:44,960 --> 00:09:50,380 which in many cases they haven't had for months or years. 82 00:09:50,380 --> 00:09:58,270 So usually this occurs shortly before death. Hence, this kind of phenomenon has sometimes been called terminal lucidity, 83 00:09:58,270 --> 00:10:04,000 and that's I understand the paradoxical acidity more has to do with the sort of loss 84 00:10:04,000 --> 00:10:10,440 of capacities that were typically encounter in dementia and and related conditions, 85 00:10:10,440 --> 00:10:19,450 while terminal acidity more refers to being close to dying for whatever reason and not being able to. 86 00:10:19,450 --> 00:10:23,550 Having conversations and so forth for various reasons. 87 00:10:23,550 --> 00:10:31,530 So in some studies where we're looking at small sample sizes, of course, but in a study using 49 cases, 88 00:10:31,530 --> 00:10:37,820 43 percent of these episodes of paradoxical acidity occurred within the last day of life. 89 00:10:37,820 --> 00:10:45,120 Forty one percent within two to seven days before death. So it's relatively close to death for these people. 90 00:10:45,120 --> 00:10:50,490 If we're looking at the length of these episodes, another study looking at 38 cases, 91 00:10:50,490 --> 00:10:59,510 we could see that most of these episodes last from 30 minutes to a couple of hours. 92 00:10:59,510 --> 00:11:07,730 And looking at how dementia and neurodegenerative diseases specifically such as Alzheimer's, 93 00:11:07,730 --> 00:11:12,500 it's unlikely that spontaneous neuronal regeneration is behind this, right? 94 00:11:12,500 --> 00:11:21,230 It's not that suddenly the brain grows back and we gain these abilities and then we die. 95 00:11:21,230 --> 00:11:26,540 There seem to be something else behind it. So what do patients do in this face again? 96 00:11:26,540 --> 00:11:34,100 They recognise and enquire about loved ones. They partake in coherent conversations, referring to different times in their lives. 97 00:11:34,100 --> 00:11:38,360 And as we could see from that Guardian quote, they appear as themselves. 98 00:11:38,360 --> 00:11:42,140 All of a sudden, even if they haven't done so in a very long time, 99 00:11:42,140 --> 00:11:49,520 what's one case which I read where someone recited poetry from memory all of a sudden a beautiful poem that they had loved, 100 00:11:49,520 --> 00:11:52,430 had loved earlier in their life. 101 00:11:52,430 --> 00:12:01,910 And as I mentioned earlier, these kind of phenomenon phenomena has has been observed in other conditions, such as strokes and tumours and chrome. 102 00:12:01,910 --> 00:12:09,650 But it really challenges, I think, our views of dementia and your degenerative disease that it's we have been giving us this 103 00:12:09,650 --> 00:12:19,690 constant decline on these functions and not a sudden revoking of of those very functions. 104 00:12:19,690 --> 00:12:24,190 The third case or the third set of phenomena? 105 00:12:24,190 --> 00:12:32,430 I want to look at the sort of the frameworks that have started being built around transformative experiences, 106 00:12:32,430 --> 00:12:40,540 transformative experiences in the literature, reference to experiences which are epistemically and personally transformative in some substantial way. 107 00:12:40,540 --> 00:12:48,790 So epistemically transformative in this sense means providing forms of degrees of knowledge and understanding that were previously unavailable. 108 00:12:48,790 --> 00:12:57,210 And more importantly, previous in a previously inaccessible insofar that they depend on having that very specific experience. 109 00:12:57,210 --> 00:13:02,320 So it's impossible to know now what it's like to have an experience before you have had it. 110 00:13:02,320 --> 00:13:09,640 And also that these personal these experiences are personally transformative in that they fundamentally change one's values, 111 00:13:09,640 --> 00:13:16,670 preferences, desires and in some substantive way who we are. 112 00:13:16,670 --> 00:13:28,370 And recently. This has gained a lot of traction, this idea of experiences being transformative in some fundamental sense. 113 00:13:28,370 --> 00:13:32,700 L.A. Paul published a book appropriately named Transformative Experiences, 114 00:13:32,700 --> 00:13:38,190 which really kicked off this debate and mainly saw it as a problem of decision theory. 115 00:13:38,190 --> 00:13:43,380 So you're not. No. It's like to have a certain kind of experience until you've had it. 116 00:13:43,380 --> 00:13:49,770 And so you cannot determine the value of any outcome that involves what it is like for you to have had that experience. 117 00:13:49,770 --> 00:13:53,100 And if you can determine the subjective values of their lives and outcomes, 118 00:13:53,100 --> 00:14:02,330 you cannot compare the values and therefore cannot rationally choose if you would be better off given those values. 119 00:14:02,330 --> 00:14:11,390 More recently, this has been sort of revamped whereat plus previously mainly a problem for decision theory as made the mention 120 00:14:11,390 --> 00:14:16,610 where we're looking at can you rationally decide to become a parent or gain a sensory ability through, 121 00:14:16,610 --> 00:14:21,470 for example, implants or acceptor that Paul uses? 122 00:14:21,470 --> 00:14:27,320 Can you rationally choose to become a vampire, given that it would be a very different way of existing? 123 00:14:27,320 --> 00:14:35,060 We're moving into now different domains and indeed dementia has been mentioned as a possible transformative experience and 124 00:14:35,060 --> 00:14:43,020 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. 125 00:14:43,020 --> 00:14:48,550 So it's impossible to know what values and preferences you would have in that state until you are in that state, 126 00:14:48,550 --> 00:14:55,300 and therefore the implications of this is like what what value or what weight should we 127 00:14:55,300 --> 00:15:00,070 give to advance directives and other tools and procedures in preparing for dementia? 128 00:15:00,070 --> 00:15:03,280 That is, if I get dementia, I want this to happen and that to happen. 129 00:15:03,280 --> 00:15:12,610 How can rationally make those decisions if we have no idea what it is like to be in that position? 130 00:15:12,610 --> 00:15:22,730 So looking a little bit deeper than that, the implications of these phenomena for philosophical ethical frameworks, but also for care in practise. 131 00:15:22,730 --> 00:15:29,750 We can start looking at personal identity. That is what does it mean to be a person, the same person over time? 132 00:15:29,750 --> 00:15:38,810 If we're look at dementia cases. Relational identity adoption, I think, is perhaps the most obvious one where it's a bit odd. 133 00:15:38,810 --> 00:15:46,700 We're thinking who who is who? A little bit if we can support people's. 134 00:15:46,700 --> 00:15:55,130 Cared for people's ideas and sort of helped them fulfil their their preferences and so forth. 135 00:15:55,130 --> 00:16:03,500 But to what extent is that identity then? What those actions, those of the person in a paradoxical passivity, 136 00:16:03,500 --> 00:16:11,750 we have the problem of someone seemingly disappearing and then coming back again later on before they die. 137 00:16:11,750 --> 00:16:17,720 And transformative experience is perhaps less so a problem for a personal identity than the previous two ones. 138 00:16:17,720 --> 00:16:20,570 But still, it's a question of is that me? 139 00:16:20,570 --> 00:16:28,210 Later in the demented state and can I make those kind of decisions early on for what should happen to me later? 140 00:16:28,210 --> 00:16:30,830 So if I look a little bit more specifically, 141 00:16:30,830 --> 00:16:40,540 a common view of what it means to be a person over time is that in dementia we gradually fade away or wither away. 142 00:16:40,540 --> 00:16:49,460 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, 143 00:16:49,460 --> 00:16:56,020 that is this person hadn't been herself for several years and just wasn't contactable or 144 00:16:56,020 --> 00:17:01,930 didn't recognise anyone in any meaningful way and couldn't express who they truly were. 145 00:17:01,930 --> 00:17:15,010 But it seems then that. The way some people take on sort of the habits of these people that need to be cared for. 146 00:17:15,010 --> 00:17:19,150 Sorry. You can call that into question. 147 00:17:19,150 --> 00:17:27,360 And more importantly, in a paradoxical lucidity is the question if they're really gone. 148 00:17:27,360 --> 00:17:32,040 If you look at philosophical theory about personal identity over time, 149 00:17:32,040 --> 00:17:38,880 one prominent account is the psychological continuum theory that is that personal identity or will or what matters in persistence, 150 00:17:38,880 --> 00:17:46,200 depending on how you look at it over time, depends upon the psychological connectedness of a person. 151 00:17:46,200 --> 00:17:53,250 In the case of relational identity adoption, we can ask who and what can constitute such a connexion over time? 152 00:17:53,250 --> 00:17:58,590 That is, is it enough that someone is carrying those personal traits or those connexions or 153 00:17:58,590 --> 00:18:08,240 does do those connected connexions need to be carried out by the person themselves? 154 00:18:08,240 --> 00:18:09,260 And then the question is, 155 00:18:09,260 --> 00:18:17,420 how do we explain breaks and connectedness to see if there is no psychological connectivity and then all of a sudden on your deathbed, 156 00:18:17,420 --> 00:18:24,080 you wake up in that sense. And there seems to be a correlation between who you used to be and who you are now. 157 00:18:24,080 --> 00:18:27,590 But in between, there is this black space. How do we explain that? 158 00:18:27,590 --> 00:18:36,140 If we think that what matters in personal identity is psychological continuum of this kind? 159 00:18:36,140 --> 00:18:42,950 It's also a problem for a theory that has gained a lot of traction over the last decades, which is narrative identity theory, 160 00:18:42,950 --> 00:18:46,280 that its persistence is essentially constituted by the ability to, say, 161 00:18:46,280 --> 00:18:51,700 tell a coherent story about one's own life with a beginning, middle and an end. 162 00:18:51,700 --> 00:19:03,110 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? 163 00:19:03,110 --> 00:19:12,710 Second, can look at coherence without completion, as it were, in in a sense that there is this gap in between and paradoxical acidity. 164 00:19:12,710 --> 00:19:23,570 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. 165 00:19:23,570 --> 00:19:31,350 So some people that sort of have these paradoxical lucidity episodes. 166 00:19:31,350 --> 00:19:36,720 We'll remember very specifically and act within a specific, coherent space of their life. 167 00:19:36,720 --> 00:19:41,250 That is not necessarily the press in time, but some time in the past. 168 00:19:41,250 --> 00:19:51,500 But that whole section is still incoherent and they interact in that universe, as it were, very coherently. 169 00:19:51,500 --> 00:19:59,410 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? 170 00:19:59,410 --> 00:20:08,560 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, 171 00:20:08,560 --> 00:20:16,900 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? 172 00:20:16,900 --> 00:20:26,450 Is that what we're telling the true story of our lives? Moving on until the question of autonomy. 173 00:20:26,450 --> 00:20:34,210 That is difficult to imagine how we would, should, would or should understand autonomy distribution in these cases. 174 00:20:34,210 --> 00:20:42,100 More specifically, I mean, if you look at frameworks such as the famous couple and Childress. 175 00:20:42,100 --> 00:20:50,170 Account in biomedical ethics, which is widely referred to and used an action, is autonomous if it is intentional. 176 00:20:50,170 --> 00:20:58,040 Taken with an understanding of that action and is not controlled by an external or restrictive internal conditions. 177 00:20:58,040 --> 00:21:05,450 But the question is, then, who has the intention then who interprets them in the case of relational identity adoption? 178 00:21:05,450 --> 00:21:12,680 And in some cases, it seems also that sort of co intentionality and co understanding that it's that someone 179 00:21:12,680 --> 00:21:21,170 is assisting people with dementia and understanding issues or carrying out intentions, 180 00:21:21,170 --> 00:21:30,260 those kind of actions or those kind of supportive actions are required for not having your external 181 00:21:30,260 --> 00:21:37,540 conditions or your internal conditions and that you have the manager restricting your wishes. 182 00:21:37,540 --> 00:21:44,830 And the question, again, looking at transformative experience is when do we have the right sort of understanding is that when we 183 00:21:44,830 --> 00:21:52,490 don't have not yet suffered the loss of capacities typically associated with dementia before we get it? 184 00:21:52,490 --> 00:22:05,720 Or do we need that transformative experience of dementia to fully understand the situation and the choices we would like to make? 185 00:22:05,720 --> 00:22:14,550 Additionally, if we look at other more perhaps comprehensive frameworks for autonomy. 186 00:22:14,550 --> 00:22:17,610 Joel Fineberg defined capacity, autonomy. 187 00:22:17,610 --> 00:22:25,170 That is the fundamental capacity of rational choices, excluding infants and insane persons and severely retarded, 188 00:22:25,170 --> 00:22:30,110 senile and comatose and including virtually everyone else. 189 00:22:30,110 --> 00:22:41,040 A genuinely incompetent being below the threshold is incapable of making even foolish, unwise, reckless or perverse choices. 190 00:22:41,040 --> 00:22:45,750 And if we're look at these relational identity adoption cases, the question is, 191 00:22:45,750 --> 00:22:52,290 can someone else than ourselves bring us above the threshold in that sense that someone else takes on 192 00:22:52,290 --> 00:23:01,160 these tasks or helps us with the cognitive work to bring us over the threshold and make decisions? 193 00:23:01,160 --> 00:23:06,920 And are we ever truly below the threshold of dementia here? 194 00:23:06,920 --> 00:23:13,910 Feinberg seems to believe that is the case. Looking at paradoxical acidity, that is the question that is. 195 00:23:13,910 --> 00:23:20,450 Are we fundamentally incapable of making such decisions or being competent? 196 00:23:20,450 --> 00:23:25,460 Or is dementia sort of a blanket that lies on top? 197 00:23:25,460 --> 00:23:34,460 Through which we cannot sort of pop up and realise our autonomy and our competence. 198 00:23:34,460 --> 00:23:42,860 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? 199 00:23:42,860 --> 00:23:51,450 That is where we are temporarily restricted from exercising our autonomy. 200 00:23:51,450 --> 00:23:55,810 Looking at other values, stress and depression, it's already very common. 201 00:23:55,810 --> 00:24:02,730 And not only the patients with dementia, but all same family caregivers and health care professionals working or and or living 202 00:24:02,730 --> 00:24:08,030 with persons with the mention this uncertainty and the clarity about what is going on. 203 00:24:08,030 --> 00:24:16,490 And so paradoxical acidity, for example. Sort of. 204 00:24:16,490 --> 00:24:24,150 If you add that the ineptness of our frameworks that we have just looked at is likely 205 00:24:24,150 --> 00:24:28,110 to contribute to poor mental health and reduced well-being in those populations. 206 00:24:28,110 --> 00:24:37,610 While if we had good frameworks and good theories to explain what is going on, perhaps we could remedy that somewhat. 207 00:24:37,610 --> 00:24:47,620 If we're looking at practical care implications, relating to that is one question is, of course, who should do what and for whom? 208 00:24:47,620 --> 00:24:54,780 If we accept somehow that other people can support autonomy and maybe even support our identity. 209 00:24:54,780 --> 00:25:05,350 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? 210 00:25:05,350 --> 00:25:16,250 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? 211 00:25:16,250 --> 00:25:20,480 Again, the question about sort of competence comes up. 212 00:25:20,480 --> 00:25:29,000 We're talking about paradoxical acidity and that adults and lucidity imply competence. 213 00:25:29,000 --> 00:25:36,560 I haven't yet come across any studies that sort of investigates to what degree we would call these people autonomous or calm, 214 00:25:36,560 --> 00:25:41,810 medically competent in that sense that they could potentially make decisions for themselves. 215 00:25:41,810 --> 00:25:47,370 But it seems at least not. Impossible that that is the case. 216 00:25:47,370 --> 00:25:54,380 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. 217 00:25:54,380 --> 00:25:59,590 They are referring to their own condition as being in dementia and dying. 218 00:25:59,590 --> 00:26:05,500 In a way that we could possibly imagine that they could be competent. And in other cases, less so. 219 00:26:05,500 --> 00:26:11,540 So it's difficult to sort of make the distinction there. 220 00:26:11,540 --> 00:26:19,370 And again, looking at their are advance directives, it's difficult to see how we would best respect the autonomy. 221 00:26:19,370 --> 00:26:28,820 Is it best retained through these documents that our advance directives or do we better trust caregivers where that is possible at all, 222 00:26:28,820 --> 00:26:32,630 where there aren't caregivers that have been living with people for a long time? 223 00:26:32,630 --> 00:26:36,790 Or do we dismiss the documents completely in the light of dementia being transformative? 224 00:26:36,790 --> 00:26:41,840 That is like you shouldn't have. You shouldn't put much weight to these documents because when you wrote them, 225 00:26:41,840 --> 00:26:48,680 you didn't have sufficient information about what it's like to be in a demented state. 226 00:26:48,680 --> 00:26:58,720 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. 227 00:26:58,720 --> 00:27:05,290 As I see it, the problem is that Kohlman contemporary theories of what dementia entails in terms of autonomy, 228 00:27:05,290 --> 00:27:10,660 identity and other related constituents of personhood are too rigid to explain and or 229 00:27:10,660 --> 00:27:15,520 allow widely reported phenomena in dementia and dementia care and would allow here, 230 00:27:15,520 --> 00:27:24,560 I mean, in a theoretical sense and not in a legal sense or permit commitments in that sense. 231 00:27:24,560 --> 00:27:32,120 So what I'm leaning toward this is that perhaps the solution would be to allow for these constitutive parts of the self, 232 00:27:32,120 --> 00:27:42,380 such as elements of your personal principles, desires, values and preferences to be relocated and still considered as that of the person. 233 00:27:42,380 --> 00:27:48,940 As long as those elements are in principle, accessible to that person in some intimate and substantial way. 234 00:27:48,940 --> 00:27:58,050 And in this way, move towards an understanding of the mind which entails its plasticity. 235 00:27:58,050 --> 00:28:03,600 It sounds a bit far out there, perhaps, so I thought it could help to relate this, too, 236 00:28:03,600 --> 00:28:13,540 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, 237 00:28:13,540 --> 00:28:20,370 obviously, than the idea of the class. Plus, this is the of the mind comes from plasticity in neuroscience. 238 00:28:20,370 --> 00:28:26,520 That is the anatomic and functional changes that the central nervous system is based on. 239 00:28:26,520 --> 00:28:31,770 So the activation of parallel pathways to maintain function within the damaged area, 240 00:28:31,770 --> 00:28:37,810 activation of silent pathways while the formation of new connexions in the brain. 241 00:28:37,810 --> 00:28:47,210 And we are already using this on this understanding of plasticity to to inform our building of brain computer interfaces and deep brain stimulation, 242 00:28:47,210 --> 00:28:52,160 to sort of help the brain repair itself. 243 00:28:52,160 --> 00:28:59,600 That is increasing plasticity through engineering in some sense. 244 00:28:59,600 --> 00:29:08,320 The second concept that it's more of a framework of understanding autonomy and care instead of relational autonomy. 245 00:29:08,320 --> 00:29:17,450 This comes from the care ethics literature. Originally, you were seeing relationships as essential for autonomy, support and retention. 246 00:29:17,450 --> 00:29:27,570 That is, no one can be truly autonomous if there is not others there to respect or sort of support that autonomy. 247 00:29:27,570 --> 00:29:33,480 Suskin Argel wrote in 2015, Framing autonomy as embracing subject intersubjectivity, 248 00:29:33,480 --> 00:29:40,080 the values of mutual respect and all responsible care for the vulnerable as well as allowing autonomy support can 249 00:29:40,080 --> 00:29:47,230 circumvent an essentially individualistic view of autonomy when its strong commitment to safeguard individual autonomy. 250 00:29:47,230 --> 00:29:53,650 So it's not a completely alien idea to sort of not only see autonomy as relational, 251 00:29:53,650 --> 00:29:59,800 but perhaps other constituents of personhood as well, such as identity. 252 00:29:59,800 --> 00:30:07,060 Thirdly, we can look at extended mind theory, which just mainly a philosophy of mind sort of item. 253 00:30:07,060 --> 00:30:11,440 But basically the hypothesis is that cognition can extend beyond the brain 254 00:30:11,440 --> 00:30:16,150 and into the world in general more than being a supporting tool of the mind. 255 00:30:16,150 --> 00:30:21,070 Things like a notebook actively co constitutes that mind. 256 00:30:21,070 --> 00:30:27,980 And most famously, David Chalmers is the proponent of this theory. 257 00:30:27,980 --> 00:30:31,460 And he argues that the notes of a book, for example, 258 00:30:31,460 --> 00:30:38,080 are no less part of your mind than your neurones that would otherwise hold the information that is in the notebook. 259 00:30:38,080 --> 00:30:43,310 And as long as they contain sort of the same information and work functionally the same way. 260 00:30:43,310 --> 00:30:46,460 So in these days, 261 00:30:46,460 --> 00:30:57,310 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. 262 00:30:57,310 --> 00:31:05,080 If we imagine that an interest objectivists account of extended mind theory, you would be able to allow mine mine extensions like the notebook. 263 00:31:05,080 --> 00:31:12,160 But not only into items, but between persons, if indeed neurones and cognitive items. 264 00:31:12,160 --> 00:31:19,960 As I call them here. That is notebooks. Smartphones are equally part of my mind as long as they fulfil the same function. 265 00:31:19,960 --> 00:31:25,790 Then why shouldn't the neurones of another person's mind also qualify for the status? 266 00:31:25,790 --> 00:31:29,180 As long as the phenomenal consciousness is left out of the equation, 267 00:31:29,180 --> 00:31:36,590 because we imagine at least that that is something very subjective that cannot directly be shared with others. 268 00:31:36,590 --> 00:31:41,950 And and as long as Condit cognition or access consciousness is what matters. 269 00:31:41,950 --> 00:31:47,210 I don't see any great barrier to take this step. 270 00:31:47,210 --> 00:31:56,040 So the plastic mind, as I envision it, is, and part of this difficult philosophical phrasing, 271 00:31:56,040 --> 00:32:03,140 an entire subjectivist and relational extended mind accounts of personal persistence and dementia. 272 00:32:03,140 --> 00:32:11,360 So this would allow that in progressive dementia as neural networks and neurones become damaged or disrupted or destroyed. 273 00:32:11,360 --> 00:32:20,210 The mind may increasingly relocate substantial elements of its constitution into other vessels if they are neurones, tools or persons. 274 00:32:20,210 --> 00:32:28,520 Doesn't really matter. But they should be somehow performing corresponding functions in some causal way. 275 00:32:28,520 --> 00:32:35,870 I imagine. I put this one in parentheses because I'm not entirely sure if causally is the most important connexion between them. 276 00:32:35,870 --> 00:32:45,180 But it seems as if there seems to be a role that needs to be a relationship between why, for example. 277 00:32:45,180 --> 00:32:51,990 Someone is voting a certain way and or performing a certain task. 278 00:32:51,990 --> 00:33:01,680 That is because it is a intention that I would have had otherwise or that I have but cannot sort of act upon. 279 00:33:01,680 --> 00:33:12,100 So it needs to be I my intentions or my desires need to be the reason for this happening, this function taking place. 280 00:33:12,100 --> 00:33:17,470 And this way of looking at the mind in dementia specifically could make paradoxical acidity 281 00:33:17,470 --> 00:33:21,880 less of a problem in terms of understanding the apparent sudden retention of personnel. 282 00:33:21,880 --> 00:33:27,940 At least from a philosophical perspective, because it's not that it disappeared and got chopped off and then reappeared. 283 00:33:27,940 --> 00:33:34,000 But it just has been sort of working its way around the fact that it could no 284 00:33:34,000 --> 00:33:41,030 longer remain in the brain or being expressed by that brain at that very moment. 285 00:33:41,030 --> 00:33:46,550 Secondly, it could inform the debate on transformative experiences and help us make sense of how the mind may 286 00:33:46,550 --> 00:33:52,400 change into something beyond what is considered sort of event horizon and progressive dementia. 287 00:33:52,400 --> 00:33:58,670 That is that we don't know what it's like to have dementia before we have it, 288 00:33:58,670 --> 00:34:05,390 and that this happens in a nonlinear manner, which I think is something that is often under emphasised. 289 00:34:05,390 --> 00:34:09,870 When we talk about dementia is the fact that it's not a straight slope down, 290 00:34:09,870 --> 00:34:18,110 but it's goes up and down when it comes to a cognitive functions and emotion, oceans and personality coherence. 291 00:34:18,110 --> 00:34:26,460 And I think the paradoxical acidity is also just an extreme case of this sort of influx and outflux. 292 00:34:26,460 --> 00:34:33,260 Of coherence. Thirdly, it could help us explain what is going on in a relational identity adoption in terms of 293 00:34:33,260 --> 00:34:40,610 caregivers partially taking on the autonomy and identity of persons living with dementia. 294 00:34:40,610 --> 00:34:47,150 So there are still some remaining issues. I think there are. I mean, more than the once on this thing here. 295 00:34:47,150 --> 00:34:56,780 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. 296 00:34:56,780 --> 00:35:08,980 I mean, just because we imagine that. People can in principle express the autonomy of a person with dementia. 297 00:35:08,980 --> 00:35:16,240 It doesn't mean that every choice they make will be that an extension of that person's will. 298 00:35:16,240 --> 00:35:22,510 And how do we determine when they should be able to make those choices that those calls? 299 00:35:22,510 --> 00:35:29,680 That's a philosophical problem about who makes decisions. That is, 300 00:35:29,680 --> 00:35:36,460 even if we allow that people can share intentions or someone can take on the intentions of 301 00:35:36,460 --> 00:35:44,140 someone else or desires or preferences of someone else in order to sort of retain their identity. 302 00:35:44,140 --> 00:35:49,320 It's not clear exactly when I make a choice or I make a decision. 303 00:35:49,320 --> 00:36:00,360 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. 304 00:36:00,360 --> 00:36:09,210 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? 305 00:36:09,210 --> 00:36:19,070 Or can we both do we both forced form sort of a new mind entity that is a co-op in that sense? 306 00:36:19,070 --> 00:36:25,040 Again, it's not even if it helps, I think, informing the debate on the advance directives. 307 00:36:25,040 --> 00:36:32,570 I don't think it solves the debate. It's not clear exactly how we should understand advance directives in the light of this. 308 00:36:32,570 --> 00:36:41,570 Maybe they should still they could serve a purpose as advisory documents at most or something like that. 309 00:36:41,570 --> 00:36:45,850 But looking at. Transformative experiences. 310 00:36:45,850 --> 00:36:55,090 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. 311 00:36:55,090 --> 00:37:03,320 I think it's somewhere in between there. Well, it's also unclear to me, and I want to stress that, 312 00:37:03,320 --> 00:37:13,360 that it's not clear what impact it has on our view, on other that is non dementia conditions. 313 00:37:13,360 --> 00:37:19,480 If the mind is indeed plastic in the sense, why should it only be plastic and dementia? 314 00:37:19,480 --> 00:37:25,060 I focus on the dementia cases because that is the problems sort that I'm addressing. 315 00:37:25,060 --> 00:37:33,920 But it's not entirely clear to me that that means that that's how we should understand a mine in general. 316 00:37:33,920 --> 00:37:39,580 Or that it's the best way to understand the human mind in general as plastic. 317 00:37:39,580 --> 00:37:46,620 And that is something that I'm happy to discuss in the Q&A afterwards. Finally, and that's something that all philosophers. 318 00:37:46,620 --> 00:37:55,350 I suppose, and many research struggle with this is asking ourselves honestly, if if an idea of the minus S. 319 00:37:55,350 --> 00:37:59,850 Plastic would be available unbelievable to caregivers, health care professionals and patients. 320 00:37:59,850 --> 00:38:07,030 That is the second. Is there any easy way to communicate this to people at how they should understand dementia? 321 00:38:07,030 --> 00:38:11,790 It's through this. That is, you will not just decline straight down, 322 00:38:11,790 --> 00:38:23,170 but actually you could share your your identity and your autonomy with other people in this way and therefore persist over time. 323 00:38:23,170 --> 00:38:31,690 So some concluding remarks. Then again, I I think these are old issues or even if new shapes. 324 00:38:31,690 --> 00:38:35,020 That's why I call them a newish ethical conundrums. 325 00:38:35,020 --> 00:38:44,170 But what's clear to me when we're looking at this recent research leaps, it's an art in need of assessment. 326 00:38:44,170 --> 00:38:50,440 It has serious effects on how we conceive of identity and autonomy and other values in dementia. 327 00:38:50,440 --> 00:38:56,500 And we need to understand this phenomena. And in order to evaluate and act upon them. 328 00:38:56,500 --> 00:39:02,140 Finally again, my account here that I've been drawing up will not solve any of these issues, 329 00:39:02,140 --> 00:39:07,762 but hopefully it can contribute to us moving in the right direction.