John Anthony Dunne: And we can get started.
Okay.
John Anthony Dunne: Professor Swinton, Welcome back to the podcast. It's lovely to have you. It's nice to be here. Thank you.
John Anthony Dunne: So we're really excited to have you back again. And in this episode we wanted to focus a little bit more on dementia specifically, and we wanted to here to open this conversation a a bit about. You know why you
John Anthony Dunne: folk, Why, you began to focus on dementia as a as one of the areas of disability so much in your writing especially, and and of course, in your your own personal personal work as a as a registered mental nurse. I wonder if you could tell us more about that?
John Swinton: Sure? Yeah, there's kinda 2 2 aspects to one. It does come out of my professional practice, because one of the things, both as a nurse and as a chaplain. One of the things that always fascinated me was
John Swinton: the whole area of dementia, and the way that dementia care was in these days, which was
John Swinton: people would be in what we're called big dementia awards, and the we're dimension, or it's like I mean it' be a bit such to people for it. People all sitting in the rules along one of these big, big, old fashioned hospitals
John Swinton: do nothing all day long
John Swinton: other than what's children's programs on television, which apparently was they was. It makes a pretty big statement, but the way people were thinking, that's it. But then, you know, when you come in and begin to do
John Swinton: worship with them, it's not a chaplain. You begin to see people changing.
John Swinton: and so the music begins to stimulate people in different ways. People begin to move. People began to take the shape and posture of prayer, and so forth. And suddenly you discover that people are
John Swinton: behave in the ways that they don't, and other times. No, it was fascinated me, and along with that big question, you know, what does it mean to know God when you've forgotten who go, it is because the guys that I was listen to, or or or minister into.
John Swinton: Some of them were academics. Some of them are like Christians. Some of them were highly intelligent people in their lives, and now something had changed, and they were different.
John Swinton: so that I was at the back of my mind. But the real reason I ended up getting involved with
John Swinton: dementia and academic level was because people kept asking me to go to conferences and
John Swinton: to speak a and dementia for no apparent reason, because I never written that
John Swinton: my friend Liz Mckinley, who it was a Canberra that's invite me to Australia to talk on dementia.
John Swinton: and eventually, as I got prepared for these lectures over for 2 or 3 years.
John Swinton: I began to see it. It's just a really important area for me to be thinking about.
John Swinton: although I hadn't really noticed it before that. I mean, I've always been interested in disability, mental health. But dementia was kind of almost forced upon me by the incessant invitations which i'm deeply grateful for over the years like. So I owe Liz Mckinley a a great debt on her.
John Swinton: but I also you also introduced me to Australia, and that was another great blessing in my life, but that these 2 dimensions are really how I came to to be involved with dementia
Steph Judd: And, John. I think that
Steph Judd: one of the
Steph Judd: one of the key things that comes up in a lot of people's experience with dementia, and when they encounter it personally is that
Steph Judd: almost visceral reaction.
Steph Judd: and I think that you mentioned it in our last episode.
Steph Judd: which is that
Steph Judd: what I recognize about this person is no longer there.
Steph Judd: So it's all through the lens of loss.
Steph Judd: and this person is no longer the person that they used to be.
Steph Judd: and I i'd like to unpack more about.
Steph Judd: Okay.
Steph Judd: the ways in which we understand personhood and and how
Steph Judd: this dementia, particularly as opposed to disability generally.
Steph Judd: is a
Steph Judd: kind of a crucible for what we understand personhood to be? Is it just rational capabilities, and and what happens when
Steph Judd: they're not there anymore? Could you? Some of those models of
John Swinton: Yes, no, rather ironically. I I can't remember what it was that we talked about in the last time. So if I repeat myself to be with me.
John Swinton: the
John Swinton: But to begin with your your comment about I no longer recognize person and the person, not the person who would.
John Swinton: That's a really interesting statement for for people to me, and I understand completely why people make it so I don't see that, judge mentally.
John Swinton: The the problem is that if you, if the person is no longer the person they used to be.
John Swinton: then who are they?
John Swinton: And why would you continue to cure for them in love with them? And that's when you get into issues, and you's an easier, because that's exactly the kind of argument that you
John Swinton: but I can understand that, you know. Let's the other say that I can. We know it's it's your mother or your grandmother, or I understand exactly why people use that language. So I i'm kind of sympathetic, and families use it. I'm very unsympathetic when friends use it. Other people do it because it makes a statement.
John Swinton: and
John Swinton: but they we in which we
John Swinton: develop our identity. It's very much based on our autobiography.
John Swinton: right? So that question. He, he, or she is no longer the person that used to be.
John Swinton: This is something about the way with within Western context that we construct our identity.
John Swinton: So to be who I am, I need to remember who I am. So I need to bring from the past certain facts and understanding of my I am into the present.
John Swinton: so that I can communicate something about the future. But I can also tell you who I am, because I am, is what I used to be a. If I can no longer remember my past, then people start to use that like language, you know. You can't remember who he is so they, for it can't be the person that used to be so. Your memory is constructed by the stories that you tell about yourself and other people tail about you
John Swinton: so in terms of person who is autobiographical person in that way.
John Swinton: But the fact that people would say something like
John Swinton: than not the person that used to be, or as as people. Obviously, I I don't really want to business person. I'd rather remember them the way they were. Tell me the important about the way in which person is just constructed. So you got the autobiographical dimension.
John Swinton: But you've also got the idea of what exactly is it holds you and yourself that makes you you in that sense.
John Swinton: and Stevens about a a a very important psychologist with a new of of dementia and his book, the Alzheimer's and Things called the Tangled Web. Some of that it is a really interesting piece of qualitative research. He he doesn't like this idea that you know you. You somehow lose yourself.
John Swinton: and he talks to people who are in various stages of the demand should generally, and the to a a big book short, he discovers it.
John Swinton: My! Of where you are not generally you. You remain yourself in that sense, not to say you're not changing yourself.
John Swinton: And he says one of the problems is that we have a particular way of thinking about the sales, which is an individualistic and just like i'm trying to say.
John Swinton: but it says a better way to think about the self as a as having 3 dimensions.
John Swinton: So when he says, is just when you're awake, when you're in the world when you're in feeling, being you're a sales, and nothing can take that away from you.
John Swinton: So you always sustain your percentage because you're there.
John Swinton: Self to, he says, is the social dimension of of yourself.
John Swinton: So you to your life you go through different rules. So you become a school boy or girl, a husband, the way for bank or whatever it is, you you accrue all of these identities, and they become part of who you are.
John Swinton: One of these identities you may pick up as you go along is that there's been somebody who lives with the men's ship.
John Swinton: The difference between oh, this key thing a bit. Self, too, is that if you get something like a diagnosis of dementia, it doesn't have to overtake your whole life. And so you know that dimension, like many other mental health labels.
John Swinton: tend to constrict you to the ship with that label so you can't lose your keys anymore. It's to make the man share. You can't miss your favourite tail. There's an organic dimension, so in everything it's subsequent to the man shit, and but it was self, too. He, he said, you you can tell a different story, somebody some to tell something that's not true about you
John Swinton: a and a bit your experience with the manager. Then you can tell another story, and people will listen to that.
John Swinton: It's problematic, because people downgrade you because they stigmatize your condition. But you can talk against that. So the social self in there
John Swinton: that is a such self. That's a that is it's very important. Self, Free says, as completely with your control.
John Swinton: because it's a gift.
John Swinton: It's a guess that's given to you by your community. You think about how you? How do you? How do you have your crew value.
John Swinton: Unless you're
John Swinton: a a narcissist, you don't accrue value by giving it to yourself.
John Swinton: I've got one of 2 friends that do that quick regularly, but in reality. You don't do that. It's always. If I was always in this given to you. So a guitar or a a wedding ring, it's not necessarily the course it's what it means to you. What if I use the songs you played at that moment in time? So volume is always wrapped up in in in in the in that process of getting like friendships, always a gift.
John Swinton: The problem with sales 3 is that very often for people with dimension that gets isn't given.
John Swinton: and so the assumption that is that they're no longer the person they are. So. Therefore why would we give them the gift?
John Swinton: And you say, Well, you get demands, so you lose value. You lose dignity, and of course you do.
John Swinton: because people stop giving it to you. It's not because you have to mention. You lose this because people still give it to me. So that levels the about says you can lose your personhood.
John Swinton: Yeah, because your community is lost you.
John Swinton: and I think that's a very helpful way of thinking about what we are as human beings. We're always people who are in the relationship with one another, we become who we are, as we as we live together as we are together
John Swinton: as we could probably.
Chris Porter: Yeah.
Chris Porter: I I think this is. It's really fascinating in this space, because a lot of the way that we relate to one another is by the narratives that we tell.
Chris Porter: And yet so many people want to say that because
people who are suffering dementia
Chris Porter: telling the same narrative as they used to telling, or is that you experiencing this, then, constitutes a
Chris Porter: a a change in identity. I'm. Reminded of the the the infamous famous. I can I can't never tell which one. The case of Finnish, the who had the tamping eye and blowing through his head.
Chris Porter: He had memory, loss, but continually knew he was Phineas gauge. He knew who he was.
Chris Porter: but he maintained for a while that he was no longer the same. The interesting thing that I find with this is similar to dementia. People want to say that we'll hit. They're not presenting themselves in the same way. They're not narrating themselves, and not in in case you at social interaction.
Chris Porter: in the same way as as you've been saying.
Chris Porter: but at the same time, then
Chris Porter: the people who are who are then rejecting this new identity, or or this new I personal structure, aren't allowing them to be able to interact in that same way. It's almost the imposition.
Chris Porter: or you know
Chris Porter: it. It's it's a a very so microcosm of Orientalizing. It's making someone out to be different from from the normate
Chris Porter: so interested within that that scope
Chris Porter: from a theological point of view.
Chris Porter: How how do we think about the personage of
Chris Porter: of of people in relationship to the the nature of Church and and the Christian belief in that way.
John Swinton: Well.
John Swinton: the way I would think about it is that all of this is changing all the time, You know i'm not the same as I was with the team, and
John Swinton: that you never really grew up. But you know.
John Swinton: think about the winds which you tell your life story. I mean at one level. It's. It's very clear that memory is not a place to trust, you know. If you you know, if you talk to any policeman, it'll tell you that 4 people saw the same accident, also something different, because you that memories didn't process the self in the way that we might think it does. And when you I know when you you know the better experience when you're really trying to remember something trying to remember some time of something, and then it pops into your mind
John Swinton: right
John Swinton: now. The next time you try to remember that you don't go back to the original memory. You go back to the time, and it pops into your mind. And of course, that's completely different. But you're a different person. You get different set of emotions. This set of feelings. So memory is fickle in that way. It's it's not something that is, as as as as as as we sometimes want it to be.
John Swinton: and and that has significance both at the mentioned, but also for our understanding of who we are as human beings before core. So you know what for? When I was a a younger man
John Swinton: before I became a Christian. I thought I was quite a decent failure, but I was level. I a good life. There was something discovered when I met Jesus that I i'm a horrible center in fear of cond condemnation. So everything that I thought about myself. It turns out to be not right. That's when I remember about myself. It turns out to be not right. So there is always that that that kind of uncertainty about the way you you. You can see the world because it's like Paul talks about. We see things to us a a glass darkly because you do
that.
John Swinton: But what Paul says it? He says
John Swinton: we are who we are in Christ.
John Swinton: So we're not who we remember ourselves to be.
John Swinton: that for obvious reasons we are who God remains to be. But we are who we are in trace. In other words, our identity. A true is held in Christ somewhere beyond our sales. In that way. Nobody knows what that means in the in specifics. But that's what that's what this Scripture seems to say.
John Swinton: and more than that in Colossian she says, your identity is hidden in Christ. So for all of us.
John Swinton: We're kind of mystery mysteries to ourselves what you might get, what what you might, might. What frame dementia is that kind of concentrated version that reminds us of who we are, and and that that's a fundamental way that we are.
John Swinton: And when you have, when you have a that, you've No, you you may find yourself
John Swinton: really thrown upon that identity in new ways, and the key would be what the other people see that the changes are difficult to manage. That's not the point, but the centre point of who you are. Isn't within your neurology. It's within.
John Swinton: So I think that's one way of of thinking about it that doesn't take away the suffering doesn't. Take it with the difficulties done to get where the need for lamentation. But it does give us a way to find hope. I hopeful identity even in the midst of profound changes.
Steph Judd: I think that
Steph Judd: that's a really helpful kind of
Steph Judd: holding intention. The fact that yes, there is lament
Steph Judd: with
Steph Judd: the grief
Steph Judd: that's associated with dementia.
Steph Judd: and I know that something that
Steph Judd: I think that I I definitely experienced with with my grandfather. He was, on the one hand, my dominant experience with my grandfather was his ability to know right, his life
Steph Judd: to me. That was the point of connection. To discuss ideas with him was a very, he was a hugely cognitive person, in a way that he related in the world. And so, when that changed the last
Steph Judd: 10 or so years of his life.
Steph Judd: It was really disorienting for us as his family.
Steph Judd: but it also was coupled with
Steph Judd: an unexpected
Steph Judd: gift, and I think there's something that
Steph Judd: I found in some of your work about the way that
Steph Judd: when you think of life as gift.
and particularly.
Steph Judd: I know that some of your work you've spoken about how to be human is to be dependent.
Steph Judd: and anything that
Steph Judd: forces us back upon
Steph Judd: that foundational truth
Steph Judd: is actually
Steph Judd: is, why is not always a bad thing. It can be accompanied with
Steph Judd: grief and things that cause us to limit. But that dependency can be a real, a real gift.
Steph Judd: something that I I wanted to hear him more from you about is.
Steph Judd: I know that you've spoken about the way that.
Steph Judd: understanding the kind of the relational model of personhood. And the fact that we're persons in relation can be a good corrective to the
Steph Judd: purely cognitive
Steph Judd: model of
Steph Judd: person toward it, as it were, just rational.
Steph Judd: my friends, on steaks.
Steph Judd: But you've You've spoken about some of the limitations of that model
Steph Judd: in your you just mentioned that before. Could you unpack for us a bit about what? What? Introducing
Steph Judd: the divine
Steph Judd: into that
Steph Judd: helps us with in in in?
Steph Judd: You know the fact that sometimes when you walk into a dementia.
Steph Judd: facility is like no one. There's no one with these people, and therefore how they.
Steph Judd: you know that compromises their personhood.
John Swinton: Yeah, it does.
John Swinton: and that but nothing. That's that's what's crucial about having that third dimension to a relationality, because in reality the people would dimension that or that that the the experience of dimension is highly stigmatized. So, therefore, people tend to avoid people with dementia.
John Swinton: We're not particularly good at relating with people who have communicational difficulties. So, therefore, that you've got that built into for you. You know the the the process of of relating.
John Swinton: and and so and and loneliness is one of the most profound and disturbing aspects of the experience of dementia. So you've got all of these factors. So if we are simply who we are, as we're late with other people, then it's very easy for people to
John Swinton: to lose that to the personality of a person each other in that stand is because people abandon them, then they can do that. You know you get lost in that sense.
John Swinton: But if you have that center point of that, your ultimate, you're always a contingent creature, and that you're always identifying that identified. What? By God, then, that that third dimension, if you like, enables you to sustain your person, even in the midst of
John Swinton: situations where you're abandoned in that sense.
John Swinton: No Haven't said that the fact that people are abandoned, and and and I'm in danger of losing who self-reference
John Swinton: is as
John Swinton: the phone challenge for the Church.
John Swinton: No, the Church claims to be the friends of Jesus it seems to be the community where friendship is the essence of what they are just to be at a place where Martin nice people can find a a place of value. And that's it
John Swinton: so it's ideally placed to re-personalize those who are be personalized by the stigmatic views of culture. So I think that's that's one of the crucial spaces
John Swinton: that the Church can't have it in a practical sense, but also in the theological sense, because it the rationale for doing that is not just when we we like to make yeah good to people. It's not just social care. It's actually a gospel and a power, if you like. Okay, gospel imperative that we do these things and do these things Well.
Steph Judd: yeah, I remember really distinctly when
Steph Judd: one of my grandfather's friends, he being someone who
Steph Judd: you know, that my grandfather had a significant impact on in his life, and he
Steph Judd: he stopped visiting him because, he said he to him, as he, Watts, you know, in full full power.
Steph Judd: and I think i'd like to hear from you what you think like. What? What are some of the big
Steph Judd: blockages that it
Steph Judd: and it this man was it?
Steph Judd: You know.
Steph Judd: the Reverend trained, theologically trained.
Steph Judd: What what is it? That's his problem? Well, I mean like it. Is it? Is it because, like 9, 10 of 10 you walk into a church, people talking about the Amago day Genesis 127 the first place I go is that this is a rational faculty that distinguishes us from
Steph Judd: the natural non-human world
Steph Judd: is that is that the main is that the source of a lot of this downstream
Steph Judd: neglect of
Steph Judd: of people that
John Swinton: no longer have that rational capability. Is that what it is, or is there something else?
John Swinton: Answer. The first one by which time I probably forgot the second one. So, but we'll come back to that.
John Swinton: But the first one is when you know that's that's the
John Swinton: I don't want to go and visit them, because i'd rather remember the way we are.
John Swinton: You can't imagine that some more selfish than that.
John Swinton: I mean. It's not about you.
John Swinton: It's not about what you'll get from this the encounter it's about the person and what they'll get from that in character which tells you something about the way in which we construct our friendships within Western societies.
John Swinton: and so we could start to fit friendship on the basis of social exchange. So I have some social boots that i'll get to you. You have to social cause you get to me. We exchange them, and then therefore we're friends. Stop doing that. We' to be friends. So you have that kind of
John Swinton: economics or capitalist dynamic that runs through relationships that just manifest itself in a in a a powerful way, in that situation. So the key thing that is, it's not about you.
Steph Judd: Yeah. And like. And also, I think, one of the really
Steph Judd: the unexpected things that happened over the 10 years of you know i'd i'd go visit grandpa Every Every weekend is that you got acquainted with a different expression of who he was that that you wouldn't have encountered if you weren't paying attention to
Steph Judd: you know. If you weren't paying attention.
John Swinton: I I think that there's and there's a profound loss. There's a lost there when you're.
John Swinton: And on your second point
John Swinton: it was actually strange enough, Stephanie, at your house. I I was at your house one day, and
John Swinton: I was. I was going to off to S to to speak later on about the it's in dimension. I've speaking this person, if you're in an anonymous.
John Swinton: and I was saying that, but i'm the same kind of conversation i'm. Still this person said, Well, you know
John Swinton: surely
John Swinton: you can become financially incompetent.
John Swinton: and so, therefore, presumably, if you have some kind of brain down you become, you're logically incompetent and spiritually incompetent.
John Swinton: So if you're no longer able to do the things you did before then.
John Swinton: Well, you you do have a problem with Go
John Swinton: was effectively what it was, but it was what we said like
John Swinton: that smiles
John Swinton: because i'd say I had to control my overwhelming
John Swinton: people. Just write people off because they bang the heads.
John Swinton: So I said to the
John Swinton: think, much less we that You' to say both Jesus and and you, stand under the top of the steel.
John Swinton: and you strip, and you fall, and you tumble down the stairs.
John Swinton: At the top of this, in your bang. Your head top of your station is a pool button. The stairs you know it.
John Swinton: I mean what kind of a gold image. Do you have that? It can go to? So
John Swinton: exactly. So he he doesn't so that we we continue to talk about something else.
John Swinton: But yes, it is an important issue, and and the issue of the image you go. That is very, very important, because you know, historically, as you say, rationality. And the Internet. Reason has been as a thing that seems to mark people in terms of the image you go.
John Swinton: But what's always interesting to me is that in the Genesis kind of creation God creates a great servicing. Blue is his rocket to put it into everything. So at creaturely level we're all
John Swinton: exactly the same. You know it's it's you get the same spirit as a line. It seems to me the tiger we all do it. The only thing that, according to that kind of that marks human beings out, is it God once talked to us?
John Swinton: God wants to the list
John Swinton: which in the case it go to his love. Is it go to once to the late?
John Swinton: So it seems to me that they, the the idea that the image of God is to be discovered in relationality makes much more sense, because if it's rationality.
John Swinton: then not only do you have the problem with falling downstairs and losing your discipleship, your salvation. You also have the idea that the energy goes as a hierarchy.
John Swinton: But if you're in neuroscience to you're more in the image of God than if you are a person with a, and then to prefound intellectual disability which makes absolutely no sense to me, they go as a hierarchy
John Swinton: of being an image, which means that they all the most of you, get, the less and less you become a name as you go it, and eventually it gets a situation where you you have to mention, and you follow the average you go, and that makes no sense like. But the the idea of relationality does make sense, because it's not determined by you. God spoke to item.
John Swinton: I said, that we we reflect the image in our desire, and in her desire we do have a natural, they'll end up to relate to one another that could be good. It can be bad, it can be distorted, but it's always there, and and you know we You have to read basic psychology books to know that that's always there.
John Swinton: So I think the idea, the image you go. It's. Relationality is a much
John Swinton: more accurate, but also much safer place for all of us, because I think it reflects the love of God more fully than the the idea that the clever we are, the more holy we become
Steph Judd: so in that concept of relationality
Steph Judd: within
Steph Judd: the Divine Trinity.
Steph Judd: What happens when
Steph Judd: I'm. No longer.
Steph Judd: and participating in a like in a recognizably kind of
Steph Judd: reciprocal way in that relationship.
Steph Judd: When I, when I don't really like, you know, when I don't really know what the creep. I don't know the what the words in the creed main. I may be able to recite them, because it's kind of this.
Steph Judd: and I know You've spoken a lot about body memory, and that was that nature of my grandfather You could kind of, you know, sing along with the G that
Steph Judd: didn't really cognitively clock what was going on?
Steph Judd: Can you bridge for us the gap between? What does relationality mean
Steph Judd: when I don't know
Steph Judd: who got is in a kind of intelligible way.
John Swinton: Yeah, but you're when you flip, you frame in a in the context of loss. But for many people you know, it's something with a profound and license ability. It's definitely the possibility, in the first place, that the same kind of reciprocity that you're you're talking about. So that it's not an issue, so I I think participation doesn't require
John Swinton: in that sense. If you think about it.
John Swinton: to go back to the the genesis again the creation i'm, i'm open. I'm not repeating myself here, but you can You're You're fantastic editorial skills. You be able to be able to take away my repetition.
John Swinton: But you know there's 2 creation stories, one where God creates the world
John Swinton: and gives the Adam the 1 million over it to hold it down to crush it. I mean that he would really start to crush it, keep it in his place.
John Swinton: But the second creation of story is different. Creation story. God gives them responsible for the care and 10 for the world.
John Swinton: So a primal responsibility to human beings is to
John Swinton: That's the responsibility that God gives us to creation, to to one another, and necessarily corollary of he has to be cared for.
John Swinton: So go the what our primary responsibilities to care and to receive care. So when you get to that stage in your life whenever that is the beginning of your life or the end of your life, where all you can do is receive care. We can't re reciprocate in the way that that we've been talking about.
John Swinton: Then you don't lose your dignity. You don't lose your you don't lose your B. You discover something about what it means to be a human being that's forgotten
John Swinton: by a. By hyper cognitive society that assumes that you have to do something that 2 bit more to be anything.
John Swinton: and you have to do something to participate. You discover what you're doing.
John Swinton: You simply have to be.
John Swinton: and being clear for is is part of
John Swinton: that
John Swinton: God given
John Swinton: perspective, and what it is to be a human being.
John Swinton: So that's what I think of it in then.
John Swinton: Just be
Chris Porter: one of the things that strikes me what you've been
Chris Porter: just a expanding from Genesis, and and in terms of that, the nature of memory and repetition which comes up so often in dementia is
that
Chris Porter: dementia seems to have have
Chris Porter: parallels with
Chris Porter: the memory patterns that we find with trauma where people get locked in to set memories or regress to certain memory and and and focus on a certain period of time. So for many people
Chris Porter: end up focus on on on important periods of time in their life, when they're often when they're a teenager, and things like that.
Chris Porter: There was a study done in, You know. I was in Denmark of
Chris Porter: nursing home.
Chris Porter: where the the the the
Chris Porter: sort of pivotal period of time for all of these dementia patients was the end of the war, and so
Chris Porter: the the understanding and and the the the the fact that they recreate the village as a in 1945, 6, 7 period, actually reduce their anxiety. It reduce their the the challenges that they had in navigating that that village.
Chris Porter: How how can we then think about
Chris Porter: so? If if we do think about dementia is this memorial struggle, the the memory loop that people get into, and and how how can we then help in terms of
Chris Porter: working with people's memory. I mean
Chris Porter: so many so many people say, oh, yeah, someone has changed. But that's often because people don't actually know who they were before X day, and they, the people, might have regressed past, or have have focused on a certain period of time prior to
Chris Porter: that their first encounter. So so what? What are some ways that we, as as individuals with the Church as well, can, can really lean into that for those who are suffering with dimension.
John Swinton: That's a good question. The
John Swinton: I I think
John Swinton: it's a it's a difficult question actually, because very often people come to that station in the lives where many people who hold their memories may no longer be there.
John Swinton: and so, therefore, as a as a cater or a supporter, you have to kind of work out from second time history what this person was like, and how they, perhaps Why, they're interested in the things that they're the the book is there or not interesting things, and to some extent
John Swinton: you this was 2 things I would say you. You have to do your homework.
John Swinton: So it's the people that I' to know this person. Well, then, you need to have conversations with them.
John Swinton: You you! You must not load these conversations to determine what it is that you're doing in the sense that she never used to like this. So they thought what would do that, so she never used to like this gives you that the sense that well, maybe this. There's a challenge here that we need to think about. But maybe she does know.
John Swinton: because dementia is is brain damage and debris, and you change so the things you didn't look to like you maybe do like now to do your homework. Having these kind of conversations in and around.
John Swinton: gather as much information as possible, so that this, the strategy that you use to communicate at this moment time are at least informed by what you can find out but history, but not determined by that. Yeah. So like I have.
John Swinton: I have a friend who she's not something that dementia, but she has. She's put together a memory box just now, because that's that's one good thing that can be done that you know. Put in that memory box and all the things that you you want people to help you to remember later on. So she's doing this early, and she's putting in the
John Swinton: music selects like deep purple like Les Zepp. Let me see DC. The. Because he's terrified in case people will play a Scottish country dance music.
John Swinton: but it's a lot of it's funny, but it's a logic in that like. So to make sure that people you you you, you have your own voice and the things that people remember when they're reminisced to see if there's a key, so you can do that earlier rather than later.
John Swinton: But there is a kind of shadow site, and all of that as well.
John Swinton: because there is some interesting research on
John Swinton: what happens when you, when you reminisce with somebody, and that that this comes away, and by memories come up.
John Swinton: and so you show a picture of Uncle Out. But the parsing cries you think oh, like Monday is supposed to be missing up. But but then the the history of the Uncle Alber. It could be all sorts of things, and it's some fascinating stuff that that goes on with in relation to
John Swinton: the holocaust survivors and your inputs. Their memories are a reprocess, and in the midst of dementia. So that is that difficult, dark side that has to be. Look at it, and I think for at least more complex issues. The key thing for a church community is to to have conversation with professionals.
John Swinton: so I don't know how best to respond to difficult situations, and and I actually think, having that collaboration with fish is is actually very important, because the professionals and learn things from from the perspective of the touch. And it's here, and it's just for that, so that that kind of collaboration is is a way of dealing with
John Swinton: all of these things.
John Swinton: So getting for this, is it?
Chris Porter: It's interesting. You mentioned music in there, one of the one, the areas
Chris Porter: that keeps keep coming up with dementia is music, and and people's ability to be able to remember music more and and have a have it. Have it emotionally affect them more, even if
Chris Porter: that they've long since forgotten the lyrics that they'll who act as a memory prime in in many ways.
Chris Porter: In some ways do we have like, yeah, it is the church almost a a a microcosm of memory for people in that. People have gone to church, you know. If they've been to church their their entire lives.
Chris Porter: or for a while at least, they they have the memories of the songs I've sung. They've often some of the weekend week out. It's participatory. They've actually sung them as opposed to just listening to them. And things like that.
Chris Porter: Do you know, if there's been a research on it. I know that there was a large study in the Uk.
Chris Porter: Done on on music and and participatory music in choirs and dementia, but I was wondering if if you know whether that's filtered through into church.
John Swinton: well, the the
John Swinton: 2 things it one. When we think about memory, we often think of it, recall memory, and the way that those talk about earlier on that you you, you PIN things from the passenger that you share, and remember in that sense
John Swinton: but a very important part of being a human being is
John Swinton: aud your memory, your body remembers things. You know that you practice things over time, and your your body just takes on the shape and form of that.
John Swinton: and it's the same with spiritual practices. So when you practice prayer, when you practice singing, or really practice whatever physical aspects of your worship communication
John Swinton: that stays with you. And so, when you come to that time in your life, and you can no longer coordinate or talk about it. I think that it never used to do it's still there. So when you see people putting their hands together in prayer, for example.
John Swinton: and what you see there is the fruit of you know many, many years of spiritual practice that now have become in body and have been in green. This has been part of who you are, and unless you're a dualist, that's that's important, because it is who you are.
John Swinton: and I may. So you have. So you, you kind of you watch memory in in that sense you you look at it, and you see it used to thinking about it because you can see it. And so you really respect. And these kinds of movements are very, very important.
John Swinton: And the second thing is.
John Swinton: and the the neurologist all over sacks. It's a really interesting group called Use Ecology, and the last chapter of that book is on a.
John Swinton: and one of the things that he says in that book is that.
John Swinton: and sometimes with certain forms of of dementia, it's not that your memory is lost. It's just you can't get to, because you don't have to sign up to a broken, so you can't get there.
John Swinton: but because it brains plastic, and because it's always constantly reconfiguring. It sometimes uses the the some of the usual pathways that relate to memory are close to the the neural path that is used to music in memory process a little place, but some of the major places.
John Swinton: And and what happens when somebody here's music is that it changes pastly. It goes through that, but it redirects it
John Swinton: to that place where that memory is.
John Swinton: And of course, when you hear a piece of music, you don't just hum a long way it it may as you as an identity. You once had people that you knew emotion feelings. And so when you see somebody singing along, just so it's not like I'm not nice to sing it along, but actually
John Swinton: remember, and things that you can't remember any other moment in time. And and you can remember or access that memory of that, but only as long as the music
John Swinton: please. As soon as the music stops.
John Swinton: the memory is no longer accessible, so personally the left, with that kind of warm, happy feeling because something happened, but they won't be able to identify it.
John Swinton: So the key thing for those of us who are engaging in and worship or engaging with people in that kind of context is to be in the moment.
John Swinton: It's because it's a for the frustration, because in that moment something very special is happening, but that moment will pass.
John Swinton: No, it's our Ted temptation. This was what to be in the moment. But, like Peter in the mountains, you know Well, the building on the top of that I want to be up here forever like. But patience is is is a key that I not a knowledge in that present moment it'll pass. But if you're there that moment.
John Swinton: then
John Swinton: special things to happen.
Chris Porter: I I wonder if, as as well, you've just given a a brief insight into one of the steps questions where
Chris Porter: she was asking about, Why do people consider that people change so much? It's because we're you know, so many people are functional jewelists. The you know, find distinguishes right in the West. I find it fascinating.
Yeah.
John Anthony Dunne: So you've talked a lot about the limitations of sorry. Let me get this for me. So you talked a lot about different types of human memory and different, you know.
John Anthony Dunne: ways of kind of holding the person together, and and and these different models. The subtitle of your book on dementia is living in the memories of God. And
John Anthony Dunne: you know. Chris was just asking about whether the church could be a kind of like, you know memory prime, you know, for for for people could could you say more about what it means to kind of have this like ex existential safety net of God's memory. And what does it mean to be held in God's memory.
John Swinton: Yeah, that's it.
John Swinton: The idea of living in a member of God is simply that that we are in Christ that I, this is really code, remembers as it matters, and the holes in in this we are, and that can change that doesn't change, that we would never change.
John Swinton: The task of the church
John Swinton: is to operationalize that.
John Swinton: But so this lovely idea! Let me feel it's like these lovely idea. It was the look like. And so what it looks like is a community that the members people will. I don't. I don't mean that just by thinking. Well, I remember how that person used to be, but you remember how they are now. So you remember in the present.
John Swinton: and remember, I arguably run in the future.
John Swinton: And so it this: the chunk shit is the
John Swinton: place where we hold one another in memory
John Swinton: and and a a a and and practice practicing memory. We hold one another and physical ways as well as, but it's always probably the thing about. And so it becomes a place where our memory lives and where we can feel secure, even though I can't remember things you won't forget me.
John Swinton: So you you are in that sense.
John Anthony Dunne: Let me think about how I want to phrase this.
John Anthony Dunne: You you know another aspect about. But the church that i'm thinking of in this conversation is ritual, and the way in which you know
John Anthony Dunne: we can participate in certain rituals like the Eucharist, you know, with varying degrees of understanding of you know, the the the nature of the ritual, or what might be taking place, You know, from from little kids all the way on up, and and all kinds of different sort of
John Anthony Dunne: rationalizing that might might be taking place or not. And I'm: i'm curious about
John Anthony Dunne: how you see ritual factoring into some of this, and and and specifically thinking about, You know an amnesty. The idea of remembering right this, this injunction to do this in remembrance of me. I'm wondering if you could say a bit about that, as it pertains to this conversation.
John Swinton: Well, the only thing i'm sure is that some of like the the sacrament.
John Swinton: It's not something that simply you and I do it something we do together.
John Swinton: So there for us. It's a calm, you know, ritual that reminds us of certain things of in relation to a salvation in relation to you. Go. It is the presence of going, and so forth. So it may be that at some moment time I don't have as much understanding of what it is as you do.
John Swinton: but you're just possible to hold that from me, because we we are the body of trace. And then, when Paul talks about the body, trace, he's not talking about it as a metaphor. It's it's meant to be a reality, which means we kind of all do the same things, but we can't all be the it's. We can't open the brains. We can all be the memory, man
John Swinton: and women. We can all do to him. So if I get to a situation where I can't remember something. We remember it for me. I'm enjoying the wine. You don't know who ha, ha, ha! I'm processing that so please don't stop me from doing that.
John Swinton: And if you want to be orthodox, then you remember for me
John Swinton: that that's the way I I would. I would think it's really I mean, I. I have a trouble, because the same thing with with people to people, with intellectuals is it's it's it's excluded from the Sacrament that way. First, My first question is always.
John Swinton: Why would you ask them questions that you wouldn't ask everybody else who in this congregation knows what this is about? And how do you know they don't know, unless you're gonna go down and interrogate everybody. But you don't do that. You pick in the one vulnerable person in your congregation. You say? Oh, it must be you. You don't know, so you can't have it so it throws up all sorts of of the interesting things.
so that that's how I would
John Swinton: process that that which I think is a very important point.
Steph Judd: and i'd like to ask you a question. That's a little bit.
Steph Judd: So it's kind of adjacent to this conversation about how in the church we
Steph Judd: can
Steph Judd: that are, relate to people with dementia, and that's to ask you a question. I've seen more close to home in terms of how.
Steph Judd: when we change the way we think about this, how does it change our model of care for people
Steph Judd: in.
Steph Judd: particularly in residential care facilities and those kinds of things. And I I've seen the way that that's been really impactful, and i'd like to hear from you. How? What? What are some tangible ways that.
Steph Judd: changing the ways we think about
Steph Judd: dementia can trickle down into the the model of care.
John Swinton: And
John Swinton: well, one of the what it
John Swinton: When I was a few years ago I did a piece of research for Aberdeen City 10, so we were interested in developing new, but and if it models a dementia here
John Swinton: it was. It was interesting. I'm not sure in some of it, like lots of reports that they done, and they're going. But hopefully, this is good work. But one of the things that I noticed early on in that was the the nature of the dementia pathway.
John Swinton: so the best possible way within our own city was, You begin with the symptoms you then you go to your general practitioner. You have a diagnosis.
John Swinton: Then you go to specialist services, bless you!
John Swinton: And then you.
John Swinton: then you, then you, that it goes all the way down, and eventually it ends up in the
John Swinton: so you end up in like. So you get this kind of pathway that you was from from diagnosis went to death like, and it's to me as as an institutionalized
John Swinton: negativity towards the intervention generally.
John Swinton: So I think one way in which we can begin to rethink that that structural level that you suggest is by changing the the language from pathway to Germany.
John Swinton: So like generally is, is a complicated. It's it's it's a mode of getting from one place to another.
John Swinton: but it's just. Some journalists could be difficult, some of the complex, the but the jump, the terrain that you cover is sometimes easy. Sometimes it's not, but a Germany always has a destination.
John Swinton: It's not going nowhere. It's going somewhere.
John Swinton: The key is where that somewhere is.
John Swinton: and as the best that possibly ends in this the journey
John Swinton: includes life.
John Swinton: It includes a possibility that there are things to be learned that the possibilities in the present, but the structures that we can create that can help people to live well, even in the best of difficulties.
John Swinton: So simple adjustment to the language or to the concept of the metaphor that's used for the way in which a services structured actually in principle can be quite transformative to the options that carers have at the end of the day in relation to what they hope for
John Swinton: as a destination for the the person that people that they're working alongside.
Steph Judd: Yeah. And I think that one of the helpful correctives that you point out in
Steph Judd: in your book on time. The coming friends of time is just this for question. You know. What? Why is it that we that we assume that
Steph Judd: some ways of being in the world, or waste of time, and opposed to others that are
Steph Judd: what worthy.
Steph Judd: and I think that
Steph Judd: as as a final question.
Steph Judd: when we live in a world that is so fast-paced
Steph Judd: and
Steph Judd: so Ted and wedded to notions of productivity as being the grounds of
Steph Judd: It's one thing to say, and I know that I've I've really appreciated your your work and talking about, you know, being present and and
Steph Judd: being present to people and slowing down the pace.
Steph Judd: Ha! How do we? How do we do that when? And I I feel it in myself, like I feel a frenetic pace that we kind of absorb from the culture around us.
Steph Judd: What are some? What are some tools that we can keep in our toolkit
Steph Judd: to help us to do those do that hard and good work of
Steph Judd: being present and expectant and attentive to people
Steph Judd: in the moment that we're in
John Swinton: some really interesting research on what's described as micro breaks. So a microbreak is when you in a really busy environment.
John Swinton: and you take even 2 or 3 min to step outside that environment and then step back in.
John Swinton: When you step outside you get perspective.
John Swinton: When you're inside you lose perspective. So you're so caught up in the moment to cut in the task that you you no longer know what you're doing. But it's actually a very dangerous situation for people who are working in care because you're so wrapped up in the in the the the miniature of the task that you don't notice the culture of absence that goes on around you in that sense. So you miss a lot of things and and and unpleasant things to come normalize.
John Swinton: But by stepping out
John Swinton: for a few moments, I think, in
John Swinton: differently reflecting the second back end, you actually go in with a different perspective, and you have void that dangerous culture that that can come from not noticing things, and it seems to me that that there's a kind of interest in that analogy that that's what it would
John Swinton: between what God says about Sabbath?
John Swinton: No, in the bits of all the time model that people of visual we're going through. Go, it says, take a Sabbath.
John Swinton: take some time out of the of your week. Think about me.
John Swinton: and then go back and we can. And you do things, since it that it's like, Go in, take a micro break. It's it's a bigger microwave than 2 or 3 min, but it's something that I like like a put. Whatever I think, describe the Sabbath moments moments when you can step outside of the business. Think about God.
John Swinton: Step back and say it again. It's just a simple meditative practice that you can incorporate into your dates to work. But it makes a difference, because you just see things differently when you have just a little bit of perspective. So that's something. I think this is a time for practice. It could be useful.
John Anthony Dunne: Well, Professor Swinton, thanks so much for joining us again. It was lovely to chat with you, and to to hear more about your theological reflection on dementia. And just this beautiful image of this, you know, emphasizing more of this corporate sense of of of the Church than we often do in the West, and and just the the
John Anthony Dunne: the the implications that that that has for not only thinking about dementia, but just rippling out further from there to be to be the body at a, as you as you've called us towards. And just really appreciate that. Thank you.
John Swinton: No, it's been a pleasure, and I hope your cool gets better.
John Anthony Dunne: Thank you.
Chris Porter: Thanks so much, John.
Chris Porter: I have more questions than than know what to do with. Oh, it's just it's a really interesting area. Isn't: it. Yeah, it's it's thoughtful. So we used to do a lot of work in memory prime and less length. 3 call a test for
Chris Porter: people with dementia and looking at
Chris Porter: at memory fixations. So
Chris Porter: yeah, the Mary Regression all often leads to memory fixation. So my grandmother, grandmother in law.
Chris Porter: I think that's the right
Chris Porter: end up. Every morning would wake up.
Chris Porter: I have her breakfast, go through all the motions, then ask for a horse to be brought, so she could ride to school, which she used to do in Sussex in in 20 something. And so this is this is her
Chris Porter: memory fixation. It's on this one period. But.
Chris Porter: like the the memories actually had, were scattered throughout our life, so
Chris Porter: memories of people were mainly in the 60 seventies
Chris Porter: and in the Uk especially, and then memories of family, was much much later in the eighties, and it's just interesting how that's stretched radiation seem to work. Did you buy a Did you buy out a horse?
Chris Porter: I think the horse would have?
Chris Porter: I used to say, i'm pretty sure the nursing home would have said nay.
John Anthony Dunne: my dad would have been trying to let you
Chris Porter: and and I was thinking, John, maybe maybe in June i'll have to take the train north and and have a chat about social Trinity sort of stuff.
Chris Porter: I think. I think we, as I said.
Chris Porter: tripping up after
Chris Porter: the S. Andrews conference in
Chris Porter: the start of June, because if i'm with Jack up there.
Chris Porter: But I was like thinking about all we
Chris Porter: when when Stephen said about
Chris Porter: Yeah, the intriguing area relations. I'm like.
Chris Porter: Oh, there are a few people I I I actually think I i'm in Sydney that week.
John Swinton: That's a big get in touch.
John Swinton: Yeah.
John Swinton: Alright, and how lovely day! Evening, morning. I'm going to sleep. I'm starting my day. My day is just beginning. What are you up to the rest of the day. John.
John Swinton: They
John Swinton: I am. I have one more meeting.
John Swinton: and then i'm going to go to the supermarket and by myself. Beer!
John Swinton: Excellent. What are you gonna get? I'm just saved yet, but I've been thinking about it a lot. It's not been talking to you guys, because of that. I was you. You do have a reasonable selection. And yeah.
John Swinton: how we do there's also some in just in make for brooding help this week is now
John Swinton: that's awesome. Yeah, I may. I may just explore that. I'll let you know. Lovely.
John Anthony Dunne: Okay.
John Anthony Dunne: this is it so? 1 59? Okay.
John Anthony Dunne: 1, 5, 9. All right. Let me let me.
Chris Porter: All right, I this this this this is Episodes episode.
Hmm.
John Anthony Dunne: And this is episode 1, 59.
John Anthony Dunne: So we just okay. I was thinking about this with this episode, the dyslexia. So what what did we call the dyslexia episode? Do we just call it dyslexia
Chris Porter: really needs to be called this dexia.
John Anthony Dunne: Oh, my gosh! I I don't remember if we just called it dyslexia. So I was wondering, what do we call this one? Do we just call it dementia, or do we
John Anthony Dunne: do we
Chris Porter: dogs? And this text here
John Anthony Dunne: do we give it a
John Anthony Dunne: a specific name like dementia and
John Anthony Dunne: memory, or dementia? And
Chris Porter: I can't. What this episode is. Question: oh, my gosh!
Steph Judd: I think it's like just to mention it's fine.
Steph Judd: Just to mention. Okay.
John Anthony Dunne: Okay, okay.
John Anthony Dunne: in this episode we're talking about dementia with Professor John Swinton.
John Anthony Dunne: Professor John Swinton is Chair of Divinity and Religious Studies, and Professor of Theology at the University of Aberdeen, in Scotland.
John Anthony Dunne: He's also a registered mental nurse and a registered nurse for people with learning disabilities, and the author of a number of books, including Dementia, living in the Memories of God, published by Airedman's and becoming friends of time, disability, timefulness, and Gentle Discipleship, published by Baylor University Press
John Anthony Dunne: team members on the episode from the 2 cities include Stephanie Kay, Judd.
John Anthony Dunne: Reverend Dr. Chris Porter
John Anthony Dunne: and myself. Dr. John Anthony done
John Anthony Dunne: so. Carry on in our series on on disability and theology in the next couple of episodes. We are going to be looking specifically at intellectual disabilities, specific ones, disorders, and neurodiversity. And for this conversation we had
John Anthony Dunne: Professor John Swinton to talk about his research and theological reflection on dementia drawing upon his own professional experience as a nurse as well. Steph and Chris, what were some of the takeaways from our conversation with Professor Swinton.
Steph Judd: I think i'm one of the
Steph Judd: K shifts in thinking that
Steph Judd: that John's work has helped
Steph Judd: Mate undergo is
Steph Judd: in not just thinking about
Steph Judd: dementia in through the lens of loss.
Steph Judd: but saying dementia as
Steph Judd: what something that can actually
Steph Judd: help a culture more broadly, that has had its own moment of an amnesia in forgetting what it is to be a creature, and that is to be dependent.
Steph Judd: and dependence involves gift. And I think that one of
Steph Judd: one of the real
Steph Judd: shifts that can take place when you realize that your life is a gift.
Steph Judd: and that
Steph Judd: you know so much of my life. I kind of the kind of tacit assumption is that
Steph Judd: I prescribe the things that happen in my life.
Steph Judd: and one of the real gifts of
Steph Judd: something like dementia is
Steph Judd: in recognizing that
Steph Judd: i'm not the only one who has
Steph Judd: complete control over what happens in my life, but I receive
that life is not just fear, but response. And I think that
Steph Judd: when
Steph Judd: yes, there is it
Steph Judd: a proper place for lament
Steph Judd: in the changes that take place
Steph Judd: when someone experiences dementia of different kinds.
Steph Judd: but that ultimately our personhood is not jeopardized by that experience that we are held
Steph Judd: in the memory of God, and I think that that is a really yeah, real, precious insight that we need to hold on to.
Chris Porter: Yeah. And I I really
Chris Porter: enjoyed by
Chris Porter: Yeah, I really appreciate it. I can't say that.
Chris Porter: Yeah. I really appreciated John's focus on
Chris Porter: on the nature of relationality as one of the big challenges with dementia as people who.
Chris Porter: as people are suffering with with dementia.
Chris Porter: often lose their relationships with others, and others perceive them as different people. And so, therefore we draw from the relationship that they once had. And and I think that this is one of those areas that our society is so.
Chris Porter: So
Chris Porter: this is one of the areas that I think I want to society so thin on being so in incipiently dualist that we focus so much on on cognition as opposed to embodied being and and relationality in that way. And so having that as a as a distinct corrective, is really beneficial.
John Anthony Dunne: If you haven't already, please, subscribe wherever you get your podcast and leave us to review. You can also follow us on Twitter, Facebook, Instagram, or visit us at our website at the 2 cities.com.
John Anthony Dunne: and with that. Here's our conversation with Professor John Swinton.
John Anthony Dunne: All right.
It's past.
Chris Porter: Thank you. I just got a splinter in my finger.