Talking Dementia: Being Present and Creating Connections

Colm Cunningham: 0:12

Hello to you and welcome again to The Dementia Podcast. I'm your host, Colm Cunningham, and together with my dementia podcast team, it's great to have you with us. We're joined today by Professor John Swinton. He's the chair in divinity and Religious Studies at the University of Aberdeen in Scotland. And it's great to have him with us today. Today, we're talking about what it means to be present with somebody with dementia. And that's particularly important when as a progressive condition, it becomes more complex and challenging as communication verbally becomes more absent. It's great to have the spiritual aspect that John brings to this conversation, especially as we're not far off Easter, Passover and the Hindu New Year to just name a few. It's been a privilege to work with John over many years, including on our publications in the "Faith for Life" series. And today, working on a research project that, again, is looking at what it means to be present. Welcome, John. I guess where I'd like to start is what exactly does it mean when we talk about being present with somebody with dementia, especially in the complex world of compliance driven aged care, and even more so now, the technologies, mobile phones and social media intruding on our world?

John Swinton: 1:33

This year communication, I think, is important because it raises the issue of presence quite profoundly. If you think of it communication, over all over the we talked, all the ways that we talk to one another, involves some kind of social exchange. So I talk to you, and I expect you to say something back to me that I can understand. And then I respond, and you've moved, so we'll go backwards and forwards and backwards. And that's just the kind of normal way if what comes back to you is unusual, or is kind of not at all, what you thought was going to be coming back from you, you get kind of dissonance, you get a nice discordant way of you're not quite sure what to do, and you get anxious. And when you get anxious, you withdraw simple, always the simplest way to deal with anxiety is to withdraw. And similar symptoms, as we deal with fear is to run away from it really. And when that happens, you know, communications break down, and people become isolated. At least part of the issue of presence in relation to particular people with advanced dementia relates to that kind of confusion over communication. So to be present, is to recognize somebody for who they are. And even in the midst of the difficulties that you're encountering, to do everything you can to make sure that you're with them, and not to allow yourself to drift off or to be fearful to be anxious, but to be with them. And to try to understand that even though you can't understand the language, it's maybe coming back to you, it's meaningful, and it's meaningful, because people are speaking, and people don't just speak for no reason. People speak for good reasons. And you may not be able to understand that, but you can recognize that. And you can acknowledge that. And you can work overtime towards some kind of understanding, which breaks down your anxiety and opens you up to the possibility of being present. But of course, the problem, the presence, we acknowledged or recognized was that actually, culturally, we're getting used to being absent. And one of the things that came to mind as when I was doing the work with you guys was just the way that social media begins to break down the idea of presence. So you're kind of used to being on your phone to people who are hundreds of miles away, even though there's people right in front of you, that are you know, you could be communicating or you certainly should be present to. And so you get into that strange habit of just always be an absent. first offense I'm interested in statistics says that this will make you smile. So we check our phones every 12 minutes, during our waking hours, 7% of us saying that we never turn off or for phones, 40% of us check our phones within five minutes. That's amazing. They even suggest that the more you use Google, the more your IQ comes down. Be careful. And so social media is really insipidly beginning to change the way that we communicate and ultimately change the way that we think about one another. Now if you transfer that absence into an aged care context, where people are already used to being absent, then you have the challenge of being with people, then you could recipe for potential harm. Maybe not a disaster, but certainly serious oversights of the way that people understand one another.

Colm Cunningham: 5:06

John, it's interesting. We noticed even in our recording today that at the start, I was saying to you look, the advise that podcasts shouldn't be longer than 20 minutes. So we're even thinking about how we use our words wisely. I'm not convinced that we should let that drive is completely. But I can only imagine how much technology is now affecting how we communicate, especially with people with dementia. And I imagine there's pros and cons.

John Swinton: 5:31

Though that is one, we're interested things before it pops in my head, because it is a strange way to communicate, you're quite right. But it makes you more polite, because he says, After just interrupting you, because you have to learn not to interrupt one another. So it may be that consequence of of the virus, the consequence of the use of zoom in podcast means that we become more polite difficulties or become nice people.

Colm Cunningham: 5:59

So you're not sounding that social media makes us a lost cause. It seems like you're telling us that we actually need to be much more aware of what we're doing and the consequences of it.

John Swinton: 6:13

I think that's that's exactly what I'm saying. But so it's, it's to do with how, recognizing that there's a problem with social media, recognizing there's a problem with being absent in that sense, and making an effort, a conscious effort to overcome that, because it means that everybody loves social media, but I'm not saying put it behind you just just be just be careful the way that shapes and forms you put it to one side side, and be intentional about being present, not just an aged care context, but at home or wherever you are, just know from time to time, bring it to fully your mind, say, wait a minute, my mind is somewhere else here, I need to come into this room, I need to be with you. I mean, sometimes it's healthy to withdraw, because you're not home, if you're constantly with your family, and then a really intense where you fall over very quickly. But that idea of just noticing that you're, you're absent, and bringing yourself into the present, taking time to just think through what's happening before you and you're thinking about why it is that you do kind of drift away, sometimes when you're having a new kind of person just becomes a good habit. You know, if we just get into the habit of doing that, then I think that things will be better for us because more peaceful, but also we'll become better carers, because we're more aware of ourselves, and therefore more aware of the people around us.

Colm Cunningham: 7:37

And of course, there's a lot of conversation when we think about dementia that talks about the person as if they are already absent, which could be a double risk here.

John Swinton: 7:47

There's a huge risk. And I think the beginning place I think their presence is is to to watch your language to think about the implications of the things that you say consciously or unconsciously. So take for example, that thing people say quite a lot. Is the person no longer the person who they were before. And think about what that means. If that person is not the person they were before, then Who are they? And why would you care for them if they suddenly become a stranger. And so there are simple ways in which you talk about somebody was talking about a situation actually influences the way you respond to because you don't respond to strangers in the way the same way you respond to friends or people that you want to be with. So I think the beginning point for intentional presence is just to be aware that the way that you talk creates the world that you see, and the world that you see determines the way that you respond to that world. So you can create people in a particular way through the language you use. That's how you'll be able to worsen.

Colm Cunningham: 8:50

And somebody with advanced dementia, it becomes much harder, because words are being lost and person needs much more physical care and their engagement backed away is often harder to say. I'm just wondering what presence means for you when we're talking about advanced dementia, when it's so easy to have reason to unintentionally dismiss the person?

John Swinton: 9:17

Yeah, it's difficult. I mean, my I wouldn't in any sense, say that it was an easy thing to do, and they just go out and do it. But you can you can manifest your presence through your, the way that you use your body, your the way that your your bodily posture. The way that you if you tower over somebody while you're doing something that tells you something about that person experiences something about the power dynamic within your relationship. If you get down to the same level as a person, and you can have eye contact while you're doing the same tasks, like manifest that you're there with them. You may understand certain things, but you're able to them so being aware of the way that you place your body being aware of the way that you stand or set Be aware of the ways in which you touch people because caring is always about touch. And I really recognize those issues with boundaries and issues with with the dangers of touch. But one of the things that older people really struggle with is the fact that they're very really touched. You know, my, my mom's ninety-six and she lives in a home. And a lot closer said, I've been called therapist, and she often says to me, like, you know, one thing I miss is that nobody touches me anymore. The way in which we communicate presence, the way in which we communicate, is often very much touchy feely in an appropriate way. But even this touches somebody's hand, the way in which you pat them in the back while you're, you know, encouraging them or whatever it is, these little gestures really show people that you're present. As opposed to talking over somebody or looking at your phone, while you're supposed to be doing something, these things indicate to people that you're not actually present. And no matter how far you are on on your dementia journey, that you notice these things, because people still have feelings, experiences, they may not remember the source of it. But they still have the anxiety that begins with a so imagine that you're being cared for somebody, and they're on the phone, it is an extreme example, blah, blah, blah, blah, the end of this person before you may not be able to articulate that may not remember that you did that. But they'll still have the anxiety because they know that that they that you weren't with them at that moment in time. And more than that you are you are being rude to them. And so in that sense, you're kind of making a difficult situation even worse, because they're left with these feelings of you know, maybe even anger or certainly frustration or hurt. And nowhere it came from and no way to articulate. So you've got to really be careful the way that you are with people enough that obviously everybody knows this, I imagine. But that's why it's so important to leave people positively. So when you've had an encounter with somebody, you always leave people with something positive, because they'll be left with that feeling. It's just a positive feeling, that's good, because that's, nobody's gonna complain about that. But if it's a negative feeling, then the whole day, they're gonna have to live with that, that feeling not knowing where it comes from not knowing what it is, but there's something else. And then if that, in turn, manifests itself, for example, in disturbed behavior, when you've got a really horrible vicious cycle that that somebody has great not kicked up, they're not deliberately been involved with, but actually has participated in. Just because they haven't noticed certain things that particular moments obtained or haven't been there, in ways that the person can really grasp in that sense,

Colm Cunningham: 12:47

John, when I think about being present, and caring for someone with dementia, and the challenges that come with that, I also think about the wonderful work that challenges me. The memory bridge work. And etched in my brain is of course, that early work of Naomi Feil's working on connecting and being present with Gladys, through touch, eye contact music, and being still Are there any stories you can share with us about seeing someone with dementia differently, or viewing our approach to being present differently?

John Swinton: 13:19

Well, I the place I see it actually, interestingly is is in the services of worship, because I went down to Hammondville a few months ago, because I was and Peter Archer, who you know, is doing some work with me just out. And I wouldn't it be nice to have a look at his services and to see what he was doing. And that's a place where you can really begin to see exactly these things where people come together as a community, you've got huge diversity of people who I imagine but don't know, don't see very much of each other very often, when they come together. And then they they can interact sometimes silently, sometimes not be engaged with the music, they engage with one another. They engage with the words of well known hymns a well known prayers. And for that moment, or these moments in that particular context, you can very clearly see something very similar. Maybe not as dramatic as that particular video you're talking about something similar, where people find themselves in new ways. And that's the beautiful thing about music that I know, you know, that is the way that it can help people to to find their memories. Because oftentimes, you know, the, the, with dementia, it's not necessarily that you lose your memory is used very often lose the connection between the memory and your ability to comprehend. And music seems to be able to bypass that and create a connection during the music. And so people will sing or they'll move or they'll do whatever they do. And of course accompanying that you know, when you hear music, you've you have experiences, you have emotions, you have feelings, there's a whole raft of things that go on in the midst of that. And so music as this poetry as the smelled has been, opens up that space, but only for the length of time that the music players. And so it's kind of one of the things that I suppose you, the presence teaches you as to how you can be with people in these moments. And we can satisfy that is only going to happen at this moment. But the right to learn from that moment, that actually there's much more to this individual than you think there is, and to take that learning back into your practice. And always have that at the back of your mind that there are maybe more things going on here than I can possibly understand. And I've seen that in this context. Let's see what it looks like in other contexts.

Colm Cunningham: 15:52

John, thanks so much again for joining us today on what will be one of many conversations, I am sure. Clearly what it means to be present in such an important area of dementia is something we have to be considering. And I'm so pleased to have this podcast just before the Easter break, as I think your words will really help families and friends and carers over this coming period. Thank you again to our podcast listeners. And as always, we have attached a number of useful help sheets that you can download that may be helpful to you. Thank you to our dementia podcast and research teams for their continued support in the development of these podcasts and our sponsor today, the HammondCare Foundation that you'll find at hammond.com.au thanks again for listening and I look forward to our next conversation. Bye for now.