Support and Care

John Swinton: 0:00

In the end, to cut a long story short, I got sacked.

Colm Cunningham: 0:02

You got sacked? Why because you were bored or you were never there?

John Swinton: 0:05

Well there was an incident at sea

Colm Cunningham: 0:14

This is Dementia Podcast. I'm Colm Cunningham. That's John Swinton with myself having a laugh about some of the twists and turns that has led to the work he is now doing. John is a good friend and someone I've known for nearly 10 years. Professionally, John is a theologian, and a world leader in the field of disability theology. His formal title is Professor of Practical Theology and Pastoral Care at the University of Aberdeen in the north of Scotland. Understanding a person's background, their culture, more about their family. All these things help deepen our ability to care for the person beyond just looking at a diagnosis. John's work looks at understanding how our spirituality and faith shape who we are. Normally when I come to Aberdeen, the rain is that fine mist that seems to leave you 100% damp, but not today. As I look to my left the clear blue sky and sparkling Scottish North Sea. I've even brought Fergus my Bernese Mountain Dog puppy with me as his brother lives near John. So a doggy playdate awaits. After John tells me about his adventures on the high seas as a marine scientist, a man of many talents, we get onto high he found his way into nursing.

John Swinton: 1:39

And that was a turning point in life because that was where I found the first part of my vocation. So I trained originally in psychiatry, and then I retrained in learning disability intellectual disabilities as it is now and and asked for a total of a little bit 16 years. I liked it a lot. And then I read about Madden, oh, 89 and 80, I decided to leave and go into well, what I thought I would do is end up in hospital chaplaincy, because my father was a chaplain. So it was kind of and I was a health care worker. It's not that hospital chaplain is like genetically passed on. Just happens to be it's in the family. But as soon as I got to university, I knew that I wanted to teach practical theology for I don't exactly know why I knew, but I just knew it was the right thing to do. And so I finished my degrees did a PhD, got a job down in Glasgow to begin with. And I was in Glasgow for three weeks when a job came up in Aberdeen again. So I came back up to Aberdeen and hadn't moved I was I was living there myself, so the family was still here. And I've been here ever since. So basically, what's happened in relation to my academic work is, I spent my academic life reflecting on my life as a healthcare professional, and all the experiences I get had with people who see the world differently, they'll become things that helped me to understand theology differently. How do you understand God in relation to profound intellectual disability? Or how are people living with dementia? What does it mean to know God when you've forgotten who you who God is, or forgotten who yourself is? So these all these earlier days, was a kind of seedbed for what I ended up as a theologian? That's how I came. I don't know how I managed to get through these different, different avenues. But ultimately, it's a good place

Colm Cunningham: 3:32

I'm always pleased to hear a story like name. that, because I'm always disturbed when people describe this very straight line. Well, I did this, this and this, because it wasn't that for me, either, you know, life. You know. And in many ways, that's half the challenge is understanding that when we're meeting somebody with dementia is just unravelling. Because it's not as if it's something that you can just sit down once to say, oh, that's, that's their story. You are always telling exactly levelling it.

John Swinton: 4:01

Exactly. And that's one of the challenges of something like, reminiscence is you're reminiscing on a really complex life, some of which is good, some of which is bad. Some of the things you'll bring to the fore are good, some of the things you will refer won't be so good. So how do you untangle that and enabled people to live? Well, it's complicated because people's stories are complicated.

Colm Cunningham: 4:19

Is there a story you talk there about the fact that you know, faith has has a very important role in people's lives? Is there anything that led you to look at that in terms of your book Living in the Memories of God and the importance of that and people with dementia lives?

John Swinton: 4:39

Well, the thing that made me begin to think of it that was my my nursing room in the first my first day on the wards in nursing was in what used to be called the Dementia Ward, which is called upper garden dementia ward. And I went in there like and it was just chaos, like those people running around, no idea what they were doing. I couldn't understand what people were saying like and that was just the staff. And people with dementia who were kind of getting no stimulation, you some people just get up in the morning, you sit in front of the television and watch kids programs, and then go to bed at night, not because people were deliberately neglectful, it's just because people just assumed that that was the case. But at the same time, when you sit down and speak to people, and when you begin to spend time, once you get past the initial strangeness of of a ward like that, in a ward environment is always a bit odd. You began to see things differently. So the the basic questions that I began to think about in that dementia book came out of probably a lot looking back at that first day, that sense of confusion or my confusion, rather than confusion, the people that were there, and realising the impact of a carer's confusion or lack of clarity about what's going on, on the people that they're seeking to offer care to. So some of these basic care questions came out of that. And then I worked as a community mental health chaplain for a number of years, as well. And within that context, I was responsible for getting to worship with people with dementia and visiting people with dementia. And again, these same issues come up when you're in the middle of a worship service, and people who are not very often normally not particularly responsive, suddenly become responsive, saying a prayer, or whatever, you have to ask the question, What's going on there? Yeah, so you have to ask the question, What was that about? And then you can say, well, it's just psychological or just, you know, well learned memory. Or you can say, No, there's something else going on here. So that same experience, I had in early in my nursing career for you know, there's something more to people than you're able to facilitate in a ward in 1976, or whoever, whenever it was, came back and my chaplain said, you know, there's more going on here. And so it's working out what that more was within a spiritual context. And the beginning point for that, I think in that book,

Colm Cunningham: 7:00

After our initial chat, I was curious about the training faith leaders might have about dementia. And I put this question to John, when we again met down under in Sydney, for the 2022 International Dementia Conference.

John Swinton: 7:15

Well, one of my roles in Aberdeen University is a Master of Christ's College. So Colm you can call me Master

Colm Cunningham: 7:23

Master?

John Swinton: 7:23

Yes. And, but one of the responsibilities I have is to for the training of ministers for the Presbyterian Church of Scotland. And I think it always strikes me as it within their curriculum, there's nothing on mental health, nothing on dementia. So they go out after their theological training, and trained in lots of different things practically and theologically, but then suddenly discover a lot of mental health challenges out there. And there's people with dementia, and they don't know what to do with it, either in terms of theology, what they think about God in that situation, or in practice, so I think there's an educational gap there. And so as you know, we're in the process of developing a new research project, looking at how we can best we can enable ordinands and pastors to become dementia aware, and to create dementia friendly ways of thinking and ways of practising. So over the next two years, we're going to be speaking with theological educators with people who are training for ministry and people with dementia to try to work out the best way to train ministers.

Ailsa Wild: 8:28

I've been talking with Clare and Jim for almost an hour. Clare suggests it's time for a break. So we get some tea and crack open the macarons. Colm and I have talked about reactions from friends and family. And I was curious about the people around Clare and Jim, and what reactions they might have had to Clare's diagnosis. Do you remember telling your sons about your diagnosis? Is that something you did? Or did you get a little bit Did you get Jim to do it?

Clare: 8:56

Did that happened as well?

Jim: 8:58

Well Daniel was involved, he was involved in the trial interview and he was involved in pointing us to Dr. Mocellan and knew who Dr. Mocellan was. And so every time we went to Dr. Mocellan over in Glen Iris, Daniel would want to know how we got on and he stayed close about that. Yeah. And and as a result, he knew as quickly as what we did, what the the diagnosis was. Andrew down in Bell Bray, joined the knowledge base by perhaps just family word of mouth, Daniel through Daniel and perhaps me. I don't recall any big announcement that we made. Luke, again, found out through family word of mouth. Luke's never approached us about Clare's diagnosis. He he doesn't cope very well with that. Other than to support me, he's made a few comments to support me. But it's interesting, the boys all had different reactions to Clare's diagnosis. Daniel took it as a very, in a very professional way. Well, this is how it is and and then Andrew wouldn't, wouldn't address the issue directly with us. And Luke still hasn't really addressed the issue directly with us. We have friends who are medicos. Yeah. And one of them is an oncologist. Now retired. He wasn't at the time. And his wife is a an obstetrician and gynaecologist and she was retired at the time. So we took them into our confidence, because they are very good and close friends. Beautiful. And they they gave us some interesting support. Yeah. Well, they gave us lots of support. Yeah. And when I was breaking down,

Clare: 11:14

You broke down,

Jim: 11:16

They helped me through it

Clare: 11:17

good. Yeah. Well, that was what happened. Just. Yeah, that's what goes on.

Ailsa Wild: 11:27

That's good that you've got those people in your life, isn't it? Yeah, yeah.

Colm Cunningham: 11:38

In Ailsa's conversation with Clare, one thing that might be invisible, is the relationship as neighbours as people running into each other in the elevator, finding out more about her as a person and her career long before they ever got on to the topic of dementia or Clare's diagnosis. During IDC, Ailsa had a chat with John, about the importance of understanding and knowing the person.

Ailsa Wild: 12:05

I want to hear more about what you think, like how you think theologically about dementia and thinking about supporting people of Christian faith and supporting people who don't have Christian faith in in that kind of spiritual way. I think that's something you've done a lot of things. Yeah,

John Swinton: 12:28

I think theologically, to begin with. There's a fundamental problem with Western culture. But there's a fundamental problem with the way we create people and understand who people are. And so you've probably heard the line, some people might use it, he or she is not the person they used to be. They want to remember them that way. There's a reason why people think like that, it's because they have a particular understanding of what a human being is, and what memory is in the context of being human. Right. So people assume that memory is something you bring from the past, into the present, and then project a possible future So recall is what memory is that it does look as if people with dementia begin to lose that like, the problem there is that when you forget your past, they can't really project into the future. It looks as if you're no longer there. Because you can't do that you can't you can't give a sense of who you are, because you can't remember who you are in that way. But in reality, we are not because of what we remember ourselves, we actually become, we are who we are, because of the people around us. Because you know, we hold each other in the simple thing of, we call each other by name. So if for whatever reason, everybody's decided to call me David, instead of John, eventually I'll become David because I just resign myself to it. It's the same dynamic with dementia, that we hope we can, if you can call somebody a dementia sufferer, and eventually they'll feel that way and you'll treat them that way. They'll lose that identity as Mary or Jane, but if you call them a person, you remember their name as you treat them accordingly, then the health now they may not remember certain things, but the strong sense of who they are. In the theological dimension is that ultimately, we're not who we are because of what we remember ourselves to be. We are who we are, because God remembers us. And that's the centre point, a theological point of perspective of what holds you in place, that if you're not a religious person, you still get that same dynamic with the community. You are who you are, as long as your community holds you there. The problem very often is the community doesn't. So one of the main problems, maybe with dementia is not that they just forget, it's their forgotten. As soon as your forgotten person pushed away there, then you live into that role. And so part of that's neurological but part of that is social and psychological.

Ailsa Wild: 14:51

It's towards the end of the conference. We're right beside the publishing stall, and a couple of staff are packing boxes of books on the floor nearby. I wonder how much the recording equipment will catch the sound of packing tape tearing out of the dispensers? I feel like John is someone I can dig deeper with philosophically and politically. Maybe that's just something we expect of a theologian. There's something I really like about feeling as though it's appropriate to ask about the big stuff. But maybe it's not just our friends or families that might be part of this. Clare, and Jim's journey to care is a journey I was somewhat familiar with. But I was curious about where it might not be so simple. I wanted to know John's thoughts on how within health or religious organisations issues might start popping up? And how sometimes institutions can fail people. How does that happen?

John Swinton: 15:48

There's an ambiguity to all institutions in that sense. They can be what you use for great Good and used for great Evil. And the fact that we're talking about healt,h doesn't make it any less of an institution. Yes, it's the same dynamic runs within organisations. And as I was saying in that presentation yesterday, when I was doing some stuff on carer presence, that organisations have mental health problems. There's a psyche that runs through your organisation like so. An organisation can be psychotic, which means that if you're inside, it feels great. If you're outside looking in you say what the heck is going on here? And they can be neurotic, because everybody's anxious and they're terrified. They can be depressed because so you have an organisation with psyche, that actually is really important. And within health and social care, for example, you suffer exactly the same dynamic, you can have a healthcare place where you really are doing a lot of good healing work. But over here you have a real mental health chances going on, if which really profoundly affects staff, for example, we may be doing really good care, but you've actually got an atmosphere in there that's something else and that's when difficulties begin to emerge.

Colm Cunningham: 17:04

Thanks for listening. The Dementia Podcast is produced by Joel Martin, and is edited by Sally Grosvenor mixing and technical support from Neil Blanco, with fact checking and research by Gina Pirello. In partnership with our friends at Sydney University's Conservatorium of Music, the music team is managed by Dr. Narelle Yeo with compositions supervised by Erin McKellar, who is also the composer of the dementia podcast theme. The composer for this episode's music is Katherine Bombardieri. Our website is dementiapodcast.com. The Dementia Podcast is a production by HammondCare's Dementia Centre.