The Enfant Terrible of the Dementia World? David Wilson-Wynne

He’s one of the most recognised voices in dementia care and widely renowned for his revolutionary research and approach to supporting people with a dementia.

David Wilson Wynne is a senior dementia consultant and an award-winning practitioner in dementia care. In this episode, we put the professional credentials to one side and got to know the man behind the work and the stories from his experience that continue to drive him today.

Over 60 minutes, David talks about:

🎵 How a simple playlist transformed a hospital ward  and why colleagues told him he was just ‘winding patients up’.

🗣️ Why he believes the word care is doing more harm than good and what he thinks we should say instead

🎤 Creating the UK's first choir for people living with dementia and the powerful effect it has had

💡 Why person-centred care, as we know it, is no longer fit for purpose

❤️ The older people who shaped who he is, including a World War II veteran whose story he's never forgotten

Whether you work in health and social care, support a loved one with dementia, or have simply ever wondered what good, human support actually looks like this episode will make you think, and we promise it will make you feel something.

Music: 'Spirit of Fire' - fiftysounds.com

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Transcript

SPEAKER_01 0:00

I would hope my champions will be my my kids. Because I hope that when I reach an age whereby I might need support, that I'll look at all the work that I've done and actually see it come alive. That's what I would hope. I would also hope that my kids will look back and say, well, at least my dad did something. At least he's attempted to try something and he got people talking.

SPEAKER_02 0:28

David Wilson Wynne is the senior dementia consultant at the University of Sterling. He's an award-winning practitioner with over with over 18 years of experience in health and social care. All the interviews I've ever done with David and the interviews I've heard done with him talk about dementia, a dementia, and how to care, how to support somebody with a dementia. The purpose of this interview, Unplanned, is to find out a little bit more about the man himself. And I'm delighted to say the finished article is a balance of both. So if you work in the world of care, support, you're looking after somebody with a dementia, maybe you've just been thrust into that role on an unpaid level. Well, the next 60 minutes will prove invaluable. Don't go anywhere.

SPEAKER_01 1:24

I see every single day people who are living with a dementia particularly, or people who are older, whereby they just have no choice and no control over what happens. Whether that's domiciliary care or care home, who provides their care, what that looks like, who's in charge. And I think that's where my next big conversation that I feel needs to happen is we need to be removing the word care. A son who I remember, and I'm going to use the word refusing to come in and visit his dad again because he just felt that that's not my dad. My dad wouldn't want me to see him like that. He doesn't recognise me, he doesn't even talk to me, he doesn't even look at me anyway. And I think when he paused, he was looking for me to do the usual kind of head tilt. I'm really sorry. And I said, Are you having me on? I remember hearing, I remember seeing things on social media of whereby, you know, university students um would be, you know, parts of their rent would be offset because they would be supporting older people who are also living in the same building as them. The ward atmosphere changed from patients sitting to patients up and dancing, either on their own, together. One chap who I can still remember, when I close my eyes, I can actually still see him doing it, would stand in the middle of the lounge of the ward and sing his heart out to You'll Never Walk Alone, because that was one of his songs that he loved. And the minute he would finish singing, all the other patients would give him this huge round of applause and he would give a bow and whatever. Then he would turn to somebody else and say, Right, it's your turn. And then another patient would stand up and sing something. But see, at the time I had professionals that would say to me, You just come in, wind them up, and then leave.

SPEAKER_02 3:17

Welcome to Unmuted Unplanned. My guest is David Wilson Wynne. Hello, David.

SPEAKER_01 3:23

Hello, Gary. Lovely to see you.

SPEAKER_02 3:24

Likewise, um, this is going to be slightly different to our usual conversations because we talk a lot on a number of different radio stations that we work on as well. We talk about care and we talk about um people who are living with a dementia and the future of care and so on. Um, but this interview is on plan. So in your hand there on your lap is uh a red velvet bag with 10 questions in. That the only rule we have between us is that you're you you're your usual honest self and answer them as honestly as you wish. And I know you will. And I get to ask you just two questions. Um, and that's only the rule. Oh, the only other thing I want to say to the listener is that there'll be a photograph that goes along with this um podcast. And I just want to say I'm the I'm the good-looking one, the tall lad with the glasses. All right. Uh I just want to say that. Uh, let's make that point. So um in my intro, and people can read um all about you and your background and so on. So let's just get into the the nitty-gritty um of the interview. Now, here's my question for you. So I've got two. So this is this is the question at the at the top of the interview for you. So let's say hypothetically, you've made a will, and I, for whatever reason, I'm in that will, yep. Bearing in mind that the cash will go at the kids and and to your nearest and dearest. But there's an item in the house that you want me to have that will remind me of you, that will bring a tear to my eye every time I look at it on the shelf up there. What would it be?

SPEAKER_01 5:10

It would have to be, I would say, taking us back to the circumstances to how we first met, and it was through it was through music. Um back in the day when I used to sing a lot and and things, and we met through that. So I have a a nice ornament that my mum actually bought me many, many years ago, and it's an ornament of a of a quaver note on a white stand, the notes like a black quaver note, and I would absolutely leave you that so that you're always able to look at it and say and think back to the many rehearsals that we've sat through and the concerts that we've done. Um, because that's how we we we first met. It was our mutual connection of music.

SPEAKER_02 6:01

What people may not know about you because they they think about your work with uh the university uh in Stirling and your own independent work that you're doing now, uh, is that you're a wonderful musician, beautiful keyboard player, piano, pianist. Yeah, yeah. And you I'm gonna tell you off because I know for a fact that you've not tickled the old ivories for a while.

SPEAKER_01 6:24

I've not, sadly. And um, but it's something that yeah, I I'd I I don't I maybe don't necessarily get the opportunity to do now, but there genuinely isn't every week goes by where I don't at least sit and listen to some piano music. You're the father of two boys and you don't have any time. I know see see if I was to really sit and think about it though, I probably do have the time. It's it's whether or not that's my priority, and and I I know right now there will be music teachers that when I think back to it would probably be really giving me a hard time right now by saying you don't sing as much anymore, you don't play the piano as much anymore. What's what what what's wrong? Because that was the be all and end all of my life for so long. Um, and I do miss it, but yeah, I'll I'll I'll get back to the Les Dawson tribute at some point, I'm sure.

SPEAKER_02 7:18

With a little bit of encouragement, yes, a little bit of encouragement. Okay, delving to the uh the old Velvet bag there. I don't think I don't actually think it is velvet, I think it's probably it's a Timu version of a velvet.

SPEAKER_01 7:35

Okay, so this question is discuss a situation or event that has led to you to doubt your professional self. Okay, and that's a really interesting one because although, yeah, what's been coined as Dave the Disruptor within the sector, um one person put it beautifully to me one time who said I wouldn't necessarily say disruptive, I would just say forward thinking, maybe a bit a bit ahead of your time. And I think of one specific situation whereby working in a hospital, and my job was to provide non-pharmacological based interventions to help reduce symptoms of unmet need. Now, by that we mean what therapeutic ways can we help reduce um symptoms of when people might become anxious or upset or frustrated. And I remember walking into this hospital and saying to myself, right, one thing I'm gonna do is I'm gonna give every patient, if they want, a playlist of personalised music, and they can select the music, but it's music that's poignant to them, that holds some form of meaning. And the ward atmosphere changed from patients sitting to patients up and dancing, either on their own or together. One chap who I can still remember, when I close my eyes, I can actually still see him doing it, would stand in the middle of the lounge of the ward and sing his heart out to You'll Never Walk Alone because that was one of his songs that he loved. And the minute he would finish singing, all the other patients would give him this huge round of applause, and he would give a bow and whatever. Then he would turn to somebody else and say, Right, it's your turn, and then another patient would stand up and sing something. But see, at the time I had professionals that would say to me, You just come in, wind them up, and then leave. And I remember at times actually having this really gut-wrenching feeling of, Am I doing the right thing? Professionally, am I doing the right thing? Um, but always having in some way, shape, or form that belief of, if it were me, what would I want? Um, and I suppose again, quite controversially, music that will deliberately evoke emotion because as human beings, we need to emotionally regulate, we need to have that opportunity to be yeah, happy and hyper and everything's great and everything's lovely, but also periods of time where, well, in Scotland they often tend to say, you know, opportunities to hear right, good, greet. So where I just need to let emotion out. But how often do we afford that to people who are living with a dementia in particular? So I would say I would I I was viewed as disruptive at that point in my career. Um, and I I have to give a shout out to the choir, to Total Recalls, Memories Choir, because nobody had put the word dementia and choir together, and that was kind of one of the first professional things that I did whereby I thought, no, it is the right thing to do. Um, but some of the comments that people would say did make me doubt, is this the right thing to do? But again, there was also a part of my my gut that was saying, no, it is nobody's done it yet, but that doesn't mean to say that it's a bad thing.

SPEAKER_02 10:54

So what the the the comments then I take it were negative. Um in what sense?

SPEAKER_01 11:01

I mean, so things like how do you teach somebody living with a dementia a new song? Um or looking at songs that um, like I say, would would evoke emotion, so it would it would bring about you know people being more emotive. Um I I remember two people once saying to me, Yeah, I'll buy a ticket for your concert for a laugh. Because that'll be interesting to see a load of people living with dementia on a stage singing, and I think what was just incredible was that funnily enough, those two people left before the end where I didn't get the opportunity to say, Well, what do you think then? Because the way in which the concerts I used to struct construct the concerts with Total Recall were it was an emotional roller coaster, so but for me, the word dementia was never mentioned, it was about people coming together. Yeah, they all had one thing in common, and that was they were living with a diagnosis, but not everybody needed to know that. Um what was at the heart of it was music and singing and being together. Um, there was also the point of you can't have a choir for people who are living with a dementia because they won't know what they're doing.

SPEAKER_02 12:17

It was it's little comments like that that used to come about when I see adverts for dementia charities on the television, they are designed to get money out of my pocket, and quite rightly so.

SPEAKER_03 12:31

Yeah.

SPEAKER_02 12:32

Do you think that it in it by its very nature then stigmatizes the person? So I'm thinking about that very well-known, very emotive um cartoon advert that's out at the moment where you've got the prince, the knight in shining armor, and then a dementia gets hold of him, and then we've got somebody who's in bed and his loved one lamenting, um, and that of course is designed to provoke an emotion in us in order to support the charity. But do you think we're it's almost like a self-fulfilling prophecy in the sense that we're stigmatizing the person?

SPEAKER_01 13:18

I think there's two bits to it. So the the first point is for for particularly media, is that yeah, bringing it to the forefront of the media is really important. If if organizations are able to evidence that this has been designed and developed by people who are living with a dementia, their care partners, then I'd be more likely to accept whatever the advert is. The second point though is realism, and I think that's what it's it's trying to get that happy balance between. So I was just having a conversation with someone about this yesterday. This forced, over-positive ethos of everybody living with a dementia must live well. But the expectation that places upon people who are living with a dementia and their families, because when it comes to the day where they can't do that, I've let them down, or I've done something wrong myself as a person who's living with the diagnosis. No, no, no, no, no. That's not the way at all. Not every day will be a good day because it again, fundamentally, we are all human beings, we don't wake up with 110% energy every day, and there's bunnies hopping around in meadows and children playing in play parks. It doesn't work human life, it just life just doesn't work like that. So I think it's trying to get that balance between not scaring people but also giving that reality of that a diagnosis of a dementia is a devastating and let's be honest, a terminal diagnosis. But there's also that point of it's not the end. Um, the other thing I do need to absolutely mention is and it's much more than just memory loss. Dementia is much more than just memory.

SPEAKER_02 15:00

The the thing I struggle with this style of interview is that I want to ask 101 questions from the other questions. So I'm gonna encourage you just to put your hand in that bag and bring up the question because I'm sure there'll be another episode of this at some point.

SPEAKER_01 15:14

Yes. Okay, so the next question is everyone needs one champion or influencer in their life, who is yours and why. So I'm gonna say there's there's I'm gonna be cheeky and give two responses. I would hope my champions will be my kids, because I hope that when I reach an age whereby I might need support, that I'll look at all the work that I've done and actually see it come alive. That's what I would hope. I would also hope that my kids will look back and say, well, at least my dad did something, at least he's attempted to try something and he got people talking. Sometimes got people arguing, sometimes he got people very frustrated. But you know what? He had he had the courage to talk about things that other people just didn't want to talk about. And I would probably say the biggest influence on my life has been older people and being brought up in a in a in a church family in the Sally Army. At that point, the Salvation Army placed great emphasis on supporting older people, so they had things like the what they used to call the cameo club, so the come and meet each other club, where they used to bring you know older people together from all walks of society and all areas. Um I'm thinking about Dundee in particular. Um, but growing up, my mum and dad used to take my sister and I to visit older people who when I think about it now, I I didn't really ever think where are their own families, where's their own sons and daughters and husbands and wives? It wasn't like that. What we just loved was the fact that my sister and I would sit with older people and just ask them loads of really, really good questions. And there is, funnily enough, when you're talking about the media, um, a very well-known charity um put a media piece of media about dementia back in 2019. What I love about it is it's kids interviewing people and asking people living with dementia questions, and that's what I loved about being young is you kind of had that freedom of being able to just ask anybody anything. Questions that as adults we don't ask each other, but as a child you got away with. Um, and older people have been hugely influential in my life because um they their stories matter to me, their legacy matters, and if there's little golden nuggets of things that an older person has told me where I feel it's been a huge influence on my life or my ethos and my passions and and and and you know my drivers, um I pass that on um because they are the they're the wisest, they're the most experienced people.

SPEAKER_02 18:00

Do you think the um the boys are gonna grow up with your mindset? Yeah, I do you do you see one of them in particular being a bit of a disruptor?

SPEAKER_01 18:10

I th I but without a doubt. So both my boys have two very different personalities. One just has that very natural, they're both very caring boys, but one has that very natural caring, you know. If if he sees someone in the playground on their own, he will go across to that person on their own and say, Well, come and play with me or come and play with my friends, and it's just natural. That's not been anything that he's you know, my husband and I have drilled into him. My other son, who's about to be five, is literally five going on 50, and it's like he has been, and everybody says he's been here before. Um he he's at that age, and whether it is just an age thing or not, but I think part of its personality of whereby he has no filter, he will just tell you exactly what it is that's on his mind. He can't he can't lie for Toffee. So if something happens in the house whereby um, and I'll say, Well, who did that? You might find other children will camouflage it within an inch of their life, and he'll just look at me and go, I did it, why? So he'll be the disruptor, he'll be the one that will get people going, Whoa, like imagine saying that, or hmm, yeah, he's got a point, but could he maybe put it in a different way? Um, and I think even if if in some way, shape, or form his nursery teachers are even listening to this, they would absolutely agree that oh he is his own little personality, and the conversations that you can have with him at the age of five year old is quite incredible. Um, there's not much that you can't talk to him about where he doesn't have some level of understanding, and even though he might not be educated on a particular topic, he'll still give you his opinion on it, regardless of whether it's right or wrong, or you agree with it or not.

SPEAKER_02 19:56

And he's not even in the teenage years yet.

SPEAKER_01 19:58

Not yet.

SPEAKER_02 19:59

Good luck. I'm gonna need it. Have a delve. Have a delve.

SPEAKER_01 20:06

Okay, so this question is Is there a situation in which you wouldn't say what's on your mind?

SPEAKER_02 20:13

And I think that's in there because you've alluded to it already, and people who follow your work know that you're a disruptor. We've used that word. I'm sure some previous employers would use something that we bought a little bit more Anglo-Saxon, perhaps, uh, in their description of you. Um but yeah, is is there anything where you just yeah, maybe I just better bite my tongue here?

SPEAKER_01 20:37

I think it is, although I I find myself talking about it more openly now, and that is around um this this word care. What does care mean? What assumptions do we base upon a person because they are receiving care? And I and I I'm doing that gesture with my fingers of inverted commas, um, compared to support. Um I see every single day people who are living with a dementia particularly, or people who are older, whereby they just have no choice and no control over what happens, whether that's domiciliary care or care home, who provides their care, what that looks like, who's in charge. Um, and I think that's where my next big conversation that I feel needs to happen is we need to be removing the word care. So when particularly when I'm thinking of a person-led perspective, we need to remove care because care is I I I deliver care. It's done to people. Whereas the word support, if we change it from care to support, I I support with, I'm alongside, um, there's more, there's more likelihood of that person who's receiving that support to still be in control, to still have say. Um, they effectively lead me, but I just I'm with them in that moment. That to me is a is a conversation that still needs to be had. It's just how to have it, because it's such a radical change.

SPEAKER_02 22:16

And it also eliminates that balance of power issue that there always is in a care relationship. You still using that word. Yeah. Whereas the you know the carer believes wholeheartedly that they're doing the very best for that individual. Yeah. But actually by taking that choice away, we're not.

SPEAKER_01 22:34

No. And you put it really nicely there in such a way of we've never ever done it maliciously, we've not set out to do that. It's the slow drip feed effect. And that was that exact kind of terminology there, a slow drip feed effect was a mentor of mine many years ago that said, Don't go in all full of confidence, Dave, and think you know it all. Go in, do your own thing, but in a slow drip feed effect, and eventually people will go, Whoa, what he's doing is working. I'll join him on that journey. It's like that when it comes to choice and control. So the fact that I go into a person's house and I care for them, it's far quicker for me to make them a cup of tea and for me to make them the breakfast and just put it down in front of them because I'm time limited, or elements of care are like we've already mentioned, is task driven. Um, but they lose that skill. Plus, wait a minute, I'm sitting here in my living room in front of the television, but somebody else is in my kitchen opening my fridge, making my food, but yet I can still do that. Um and yet what happens is that when that person loses that skill, we then blame it on everything else. So it's their dementia, because of their dementia, they're you know, can't make a sandwich anymore. It's sad, isn't it? But actually, what we don't think about is no, the reason, half the reason they've lost that skill is because everybody's been doing it for them for too long.

SPEAKER_02 24:04

And I suppose we that I it's a really interesting point because it's about the definition of what of what we are going into do, and I think support's a great word for it. Um the challenge for you is going to be talking to the sector about this, yeah, but also the people who are wedded, and I'm talking about the academics as well, yeah, who are wedded to person-centered care because it's been around for so long. Yeah. What I found with person-centered care was actually the person at the center of the care becomes further away because in my experience, the more people get involved, and that can be families, that can be friends, it can be stakeholders, social workers, and so on. Everybody seems to have an opinion on what that person should be getting in terms of care, but actually nobody's asking the person. Yeah. So it's a really interesting, it's a really interesting point. But you're gonna have your hands full, aren't you?

SPEAKER_01 25:13

I think particularly because we even frame it as the care sector, health and social care sector, health and social care. I might never see it come alive in my lifetime, but I just know for a fact that um, and you and I chatted about it before we before we started today. Um, if all control was removed from us as human beings, we would not be happy about it, and we would let our feelings, you know, we would, we would, we would tell people about that. But yet by default, there is aspects of things that happen every single day, and it's not to be negative about it because working in domiciliary care, working within care homes, is one of the toughest jobs out there, and I've I've been there and done that. But we make a rod for our own back that the minute we start introducing care and what that means, um we're almost setting up to fail, in my opinion. Whereas if we place support and we're led by people, there's far less likelihood of that happening, of us failing, because we're being led by the person that we are providing the support to.

SPEAKER_02 26:27

Another question. Let's go for it.

SPEAKER_01 26:36

Okay, so this is your world view, optimistic or pessimistic, and why? I'd probably say I am more optimistic because I think there's always a solution to something. I might not have it, but I would hope I know somebody that does. I'm also optimistic based upon the fact that within my line of work I'm able to pretty much evidence everything that I do by the voice of people guiding me. Person-led practice, um, it's been talked about before, but nobody's really brought it right to the forefront to bring it to the to the conversation, to bring it to the table. So I'm optimistic because even in past webinars that I've been conducting about person-led and when I've been speaking at conferences, it's attracting attention. And that fills me with optimism of the future of what support will look like.

SPEAKER_02 27:41

Um you've been cited in the CQC recently by the CQC.

SPEAKER_01 27:47

So, this lit review that was done to help inform the CQC's new dementia strategy, which will um hopefully be getting published next year. Um it's that bit of it whereby I'm I'm optimistic that there are more and more providers, there are more and more other very influential people in the sector that are saying, keep going, Dave, keep doing what you're doing because we've plateaued for too long. We need to move, we need to move forward. And to a degree, um, it's up to the next generation. So there are hugely influential people that have been in my career who have been working within the field of of um of dementia for a long, long time. But what I'm even noticing is them now turning to me and saying, It's over to you now, it's your generation. You will be the next thought leaders, you will be the next people that will really help influence and embed change. Um, and I'm optimistic about that because I see more and more people, like I say, and I and like I've already said, I see more and more providers, I see more and more organizations looking at human rights. I see more and more organisations saying to me, tell me more about this person-led approach as opposed to person-centred, I want to hear what that is. As opposed to the pessimist, which would say, no, person-centeredness is the be-all and end-all. It's all we've ever known, it's all we'll ever stick with. Thanks very much. The whole view of if it's not broken, then don't fix it. But my opinion is it is broken, well and truly broken, and we need to think of a solution out of that.

SPEAKER_02 29:18

I'm losing track of it. I think this might be question number five, I think.

SPEAKER_01 29:21

I think it is. Okay, so this question is if you were down to your last quid, what would you do with it? To be honest, I suppose I could be the devil's advocate here and say, what does a quid buy you nowadays? But I'd probably say I'd go and buy myself like my favourite sweet and enjoy it on my own. Um that sweet being a wee a wee cheeky pocket of the original Lions midget gems. Love them. Um why is because it it holds memory for me of eating those sweeties. Um there are particular people that come straight to my mind um when I think of that sweet, but it's also known the satisfaction that it gives me when I eat them. I don't eat as many of them now, thank goodness, but um that would be a quid well spent, I would say.

SPEAKER_02 30:46

Maybe we need to change it if you were down to your last 150. You can't even go to Mars bar for a quid. But you make a very good point, and you know, again, it it reflects, I think, the the work that that you do and what you talk about, and and about what makes memories for people, um, and and and if somebody has capacity or not, I wonder about this a lot. Is that if if I was living with a dementia, I don't know whether there's any science behind this, but what what I'm fearful of is that I'm trapped internally. And what I mean by that is I know what I want to express, I know what my mind is saying to me, that I want those magic gems, but I cannot communicate that to you. I am very fearful of that when I even when I think about it now, yeah, and I may not even, you know, live with a dementia, yeah, God willing. Yeah, is that does science tell us that that's how dementia operates or how it how a dementia materializes?

SPEAKER_01 32:03

I mean, it c yeah, because what what we know is that dementia does impact communication, but then what we become really fixated on is verbal communication, because as we we go from I often illustrate it from the point of view of when my son was little, and before he could even utter a single word, if he needed something, he'd take my hand and he would guide me to it, because that was his way of being able to communicate. But as we as we we we develop, you know, verbal communication becomes our primary means of how we communicate our thoughts and our feelings and our wishes, desires, whatever. Um, but for people who are living with a dementia, there are still very, very influential and powerful ways in which they can communicate without once having to open their mouth, and that's what I love about it is I can tell a lot about how somebody is feeling or something that they want by just facial expression, by just body language. It's my opinion is that it's us who has to change. So if you were sitting here right now and you couldn't verbally communicate with me, but you needed something, I could base part of it upon biographical information, so stuff that I know is meaningful to you, food I know that you like, for example. So if we're we're thinking about a sweetie, for example, um I could think about I could I could ask people who know you, but I don't become obsessed with that, I don't become obsessed with biographical dementia being viewed as a biographical condition, and because it is, um, dementia is viewed upon it's everything in our past that informs who we are today, and it does to a degree, but take me for who I am today as a human being, um, and even even more so, what do I still want for my future? So I think communication is is actually everything else, not just voice. So there would there be there's always a solution, there's always a way in which I can try and ascertain how a person thinks. Now, technology, we'll see huge advances within that. There are also very tangible things like um there's an organization and uh that that that will do very specific like visual elements, so prompting visual elements, and you can just detect by the way in which the person's eyes immediately animate when you show them an object that's pertinent to them. They clearly want that, they want to touch it or they put their arm that their arm out to to grab it. Yeah, things like that.

SPEAKER_02 34:42

Alright, David, we're ready for another question, have a week.

SPEAKER_01 34:46

Okay.

SPEAKER_02 34:47

Question six, eh?

SPEAKER_01 34:48

Yep. Tell the listener about a time when you've been less than empathetic and why. Whoa. Okay. So the first thought that came to my mind was when thinking back when I was a clinician within the ambulance service, and arriving with my colleague to a triple nine call at a care home, and the staff member of staff coming to the door, and effectively what came out was just every poor practice, bad practice terminology words that you can put together in a sentence. And when we walked in to this lady's room, what I was greeted with was a scene that I'll just never ever forget. There was a lady that was so so upset, um, because nobody was understanding her at all, and although I think to a degree by default, um the staff were looking for some form of empathy because like it's been a really, really difficult night for us. It's by this point it was like three o'clock in the morning or whenever it was, and I said, No, no, um, I don't feel sorry for you at all. Because my view would be is you should know, you should understand, you should act with empathy. Um that was always a huge conflict for me in clinical practice of knowing that there are clinical procedures, there are there are things that we need to do clinically, but we don't necessarily agree with them. Um, there's also the point of empathy within whether people are doing the right thing or not. Um, and I again I had a really interesting conversation yesterday about like what families want to know after the diagnosis of a dementia. Um, and this again, very quite controversial point of a son who I remember, and I'm going to use the word refusing to come in and visit his dad again because he just felt that that's not my dad. My dad wouldn't want me to see him like that. He doesn't recognise me, he doesn't even talk to me, he doesn't even look at me anyway. And I think it when he paused, he was looking for me to do the usual kind of head tilt. I'm really sorry, and I said, Are you are you having me on? And he said, No. And I said, What about your dad? Because even though and and I'm a huge believer and will always be a huge advocate that no matter how advanced a dementia is, the person is still inside there, it's how we get them out. That's the point. So yeah, I would say there's two periods of time where it could be argued I maybe should shown, I should have shown empathy, but actually I I didn't because I was the advocate for the person's voice that was lost. So that's my defense. Should I need one?

SPEAKER_02 38:08

I have a view that in this country we train our carers. Always very mindful about the language that I'm using now, and then particularly when I'm speaking to you, David. Um we we appear to train for compliance and not connection. What I mean by that is we are we don't want to be sued, we don't want to be accused of anything. There's almost this fear, we're almost discouraged to make a connection, a human connection with somebody because of boundaries and safeguarding. I get all that, friendly, not a friend, da-da, all that stuff. But how can you provide support with any depth of meaning without building a connection? How can you go into a stranger's house and encourage them to shower or to assist them to shower? One of the most intimate things that you can do with a let alone a stranger but a human being.

SPEAKER_01 39:20

And I think that's why for me, what has always been really important is before I cross the threshold of somebody's front door, I need to know who I'm going to. I need to know as much information as I can so that the minute I engage with that person, I can be meaningful right from the start. So again, if I if I were to be sitting in my house and God forbid I needed some element of support, if somebody came in and immediately said, um, what's this I hear about you being a huge fan of Mike and the mechanics? They've got my attention straight away. Um and that might only it might only be one bit of information they know. But if if if that's going to help me engage, it's going to help me build rapport and trust with an individual, that's where the difference is, as opposed to the generic questions of somebody coming into my house saying, How are you today? And what would you like to do? Yeah, because that's given choice. But if they already know um and can help gauge, um, so for example, I'm thinking I might turn around and say, No, I don't want to have a shower this morning. Um, I'd actually like to go and have a soak in the bath. I could have a soak in the bath, but then what's more meaningful is having a soak in the bath with NAVE portable speaker playing Paul Karak in the background or level 42. There's a bath, and then for me there's a bath, and I would want somebody to do that with me. Um, so you're absolutely right, it's and again at points where things you kind of cross the boundary, families feel this a lot. So the point where I'm no longer son, I'm carer because I'm having to do things for my mum, dad, whoever it may be, that I didn't think I would ever have to do or that I shouldn't do. Um, how do you then get back from that? How do you backtrack when perhaps support does come into play and get back to that meaningful relationship that you that you once had? For me, it's the start of for 10 is before I cross the threshold of any room in a care home or any person's own home, just give me two golden nuggets of information and then leave the rest to me. That's that's all I would need.

SPEAKER_02 41:38

That leads us into, I'm not gonna do it just now, but leads us into a whole new conversation about the benefit of support plans, you know, worth the paper they're written on, updated, read, da-de-da. We can do that another time. Uh, question seven. Question seven.

SPEAKER_01 41:54

Okay, so this one is you form a political party. What are your three manifesto statements? How apt indeed during the week that we're in. So um, first and foremost, my my first manifesto statement would be is concentrating on an aging demographic. We're all living longer, and we need to be more proactive about that as opposed to reactive. Um, and out of that, I would hope would come the central point of people truly valuing older people, because I feel that that to a degree has been lost. So I would probably have something in my manifesto that has been written purely by older people, so that's showing this is a this, you know, we are still humans, we are still us. So that statement of we value older people as a political party would be my first point. The second point would be um making our NHS and our health and social care system on a level par, if not actually health and social care above the NHS system, purely on the basis that I just feel that to a degree the health and social care sector is hugely undervalued and we don't appreciate it enough, but yet is the backbone for what we provide. If you sort out health and social care, you can pretty much sort out any other issue that will come along with it. Um so there would have to be something in and around um, I think everybody, particularly people who want to go into the field of like say nursing or paramedic science or even dentistry, occupational therapy, whatever it may be, um, they all need to to. Work within a domiciliary or a care home, I would make that a manifesto pledge that any clinician that will be trained in the future will be trained in ageing and in dementia because I think that's important. Um and I think the third point would be I don't want to give too much away here, design. My third pledge would be no new care service in this country will be registered from a particular year unless it can demonstrate a minimum standard of dementia design. Um that includes hospitals, that includes care homes, public buildings. Um it's a very bold, strong manifesto pledge. Um but it's uh crucial.

unknown 44:54

Great answers.

SPEAKER_02 44:55

Very good answers, in fact. And I mean there are certain countries in the world that are reputedly better at supporting older people, family members and so on. Some some of the Asian um societies, Scandinavian countries. Is there any country in particular that's blown your socks off?

SPEAKER_01 45:22

I would say not necessarily a country, but the how how older relatives are viewed within some cultures is incredibly heartwarming to me. And I've had the privilege of supporting people from all different cultures and all different backgrounds, but nothing pleases me more when I see an older relative living within a family unit of whereby they no, no, no, they're not going into a care home or they're not going to they'll come and live with us because there's just something so lovely about that, and actually, there will be people listening to this right now who I know for a fact, colleagues of mine, friends of mine who have done exactly that, and that is they brought granny to come and live with them. Um and sadly we don't do that as much now. Um, within some cultures, it just doesn't happen. Um, but yeah, I would say within an Asian culture, um, they place older people right at the kind of they're the matriarch of the family, um, and everybody still goes to them and they they they they live within that environment. I absolutely love that. Um, I think it's really, really important because we can all learn from that. I think it sets a very good example.

SPEAKER_02 46:48

Maybe I dreamt this or read it, or maybe it's one of these, you know, non-checked Wikipedia files. I can't remember which country it was. I remember reading this. If you lived in a certain sort of country and you didn't if you didn't treat your older relatives well, they could they could they could sue you, could take take you to court, or do there was some sort of legal recourse. I can't remember which one it was, and it might have been a lot of old Toffee, but um, but it was just just one of those interesting points we got.

SPEAKER_01 47:19

I think it's the same as like with I I I love countries that are adopting this model of like student student accommodation where it's intergenerational. Oh right, okay. Honestly, so students living with older people in the same environment. I love that idea. Well, it's it's not just in one specific country, it seems to be happening in quite a few. I can't think of one right offhand, but I just I just I remember hearing, I remember seeing things on social media of whereby you know university students um would be, you know, parts of their rent would be offset because they would be supporting older people who are also living in the same building as them. And that's a concept that I just absolutely love.

SPEAKER_02 48:00

Very good. Yep, very good.

SPEAKER_01 48:03

I could put that as my fourth manifesto pledge. You could indeed partly.

SPEAKER_02 48:06

You could indeed. Okay. Alright, go for it, my man.

SPEAKER_01 48:10

We're on the home stream now. Why does it appear that we have more people talking rather than doing? Uh, that's a really, really good question. Where um a continued bugbear of mine is when I go to a conference or I hear other people speaking at a conference, and somebody will stand on a stage and they hit the nail on the head, and everybody goes, Wow, everybody claps, everybody applauds, and there's still that usual thing of so let's all go away and let's truly make a difference. And then within 72 hours of that conference ending, all the momentum just fades because everybody goes back to their jobs and their real life, right? Um, that's what I kind of feel still continues to happen. It's people will go and stand on a stage and talk about something which is you know groundbreaking in terms of its, you know, the research outcome or the tangible difference it can make to people's life. But for me, it's about the sustainability of that. So that's where you could have somebody that's the difference between the talking and the doing, because there's things that I'm currently developing that already I'm testing, and the reason I test it is and but again, but yet I still go to conferences and I'll talk about it. But at least I can stand up on that conference stage and say, but I'm doing something tangible, I'm not just developing something because I've sat one day and I've thought, oh, that's not been done yet. I'm gonna try that. I go back to the point of the like the total recall memories choir. That was an idea that came about because I was directed by people who are living with dementia, and they said they wanted to come together as a single-on group. Now, the talk was this is going to be interesting, it'll be very different. Nobody's ever done anything like this before. The doing was putting that choir front centre stage, but not just their own concerts, it was anything else they can get involved in. So we sang at you know, Tannedice Stadium, Royal College of Nursing Events, Dundee Rep Theatre. That's the doing because the doing was educating to the to the masses, to society. The the the talking points were during the rehearsals, and um you came along to you recorded actually when I think back to it a number of years ago, you did a recording of the choir, and it's it's that bit of it of what initially all started in talk became a very obvious doing, but I just let them run with it. Not not you know the the programmes when it came to the concert, everything was decided by them. Um if halfway through the concert or halfway through a song, two people from the choir decided I'm not just I'm I'm not going to sing, I'd rather dance with my partner by all means dance, yeah, clap, do do whatever you want. That that's to me what it's all about because that's the doing, it's the stuff that people can tangibly feel, yeah.

SPEAKER_02 51:28

And it's it's it's a double whammy, really, isn't it? So the people who are participating in the choir are getting something, but also the education.

SPEAKER_01 51:37

I never thought about the educating side of it. And it's it's the the when I'm lecturing at the university, I could stand up and lecture about dementia for hours. When I bring in somebody who's living with a dementia and they talk about it, probably creates it does create far more impact. Um but for me, the doing and the difference is when I make a student feel something, and I would hope, my hope is that anything that I speak at, anything that I do, I want people to go away saying, he made me feel something, whether it's laughter, emotional, reflection, whatever it may be, um, because those are always the individuals that have made the biggest impact upon me. If I've sat in what could be a so I'm thinking of one one paramedic clinical trainer that I had, um, when it came to supporting a woman in labour, I was absolutely terrified of this because I was just a young student and I thought I'm never going to be able to do this. But he included everything he needed to include, but it was so much humour that I walked away, pretty much remembering everything that that man said because he made me feel it. Um, and still to this day, there are particular words, particular phrases that whenever people say them, I just immediately kill myself laughing because I think of him. Because he made me feel it. That's the doing.

unknown 53:04

Brilliant.

SPEAKER_01 53:04

Number nine. Out with the global stuff, what really pisses you off, and how do you cope with it? I'm gonna go back to that question that we just had, and I think that's what to a degree what does piss me off is too many people all talk and not enough doing. Um I think what else really really grates on my nerves is the wording of things. So terminology is a huge thing for me, but part of the reasons why I'm doing the stuff around person led is because I just cannot abide person-centredness, it's just it's just a buzzword that rolls off the tongue. Um dementia-friendly is another one. Can't stand because what does dementia-friendly actually look like?

SPEAKER_02 54:01

And you see these terms, by the way, on hundreds of websites when you're looking for care. Yeah, yeah. And it's just it seems to be across across the board.

SPEAKER_01 54:13

Yeah. And I'm viewed as controversial or disruptive when I walk into an environment that classes themselves as dementia-friendly, and I'll say, Where? And they go, You cheeky sod. Like, how dare you? And I'll say, No, but seriously, where? Because I can't see it. Um, and other things like dementia specialist. What does a dementia specialist look like? And this is going to come across as being incredibly, incredibly um bitchy, if I can use that word. And that is that you don't need to be a nurse, and this is this is a a genuine call to anybody out there right now who is sitting there as a care assistant in a care home saying, It's great listening to this guy, but I'll probably never get a job like what he's got, or I'll never get a position like what he's got while I did it, and yet it's taken a lot of guts, it's taken a lot of blood, sweat, and tears. Um you don't have to be a nurse to be a dementia specialist. That's something that really, really grates on my nerves, is when people will, and there has been points in the past where people have viewed me as a less of a consultant or less of a person in terms of a dementia specialist purely because I don't have a nursing qualification. That winds me up, considering that the vast majority of people who I actually provide consultation to are nurses.

SPEAKER_02 55:38

Okay, we're on to our final question, I believe. Well, it's sort of no, I've got a question for you, but this is your final one out of the old red bag.

SPEAKER_01 55:49

Okay. Is the concept and practice of person-centred care still fit for purpose? Now, if there was a question with my name on it, Gary, that is it. Um I think if there are people out there, they'll probably already that that is aware of my work, they'll they'll already know the answer to this. It's absolutely not, it's not fit for purpose anymore. There is there is no other area of practice that was first coined and brought out in the 50s that we still do DND out. I I I asked the question too, so my my my mum um has been frontline NHS now for my god mum, sorry if you are if you're listening to this, my whole lifetime, right? So say let's say 40 years, and I'll say, tell me some of the things you used to do that you don't do anymore. And um it was an amazing conversation because there were things that when I when she would tell me, because that's what we all did, that's what we thought was right. Um a shout out to my to my friend Lindsay Dingwall, who has been a nurse for a long time too, that would say, but there was a there was things that when I think back to my practice, you would get the sack for now because it's just not the way in which we do things. Yet person patient-centred was first coined in the 50s, and Professor Kitwood brought it to the forefront of dementia care, late 80s, early 90s, and then we've just plateaued. There has been nothing new since then. And uh a little shout out to an amazing man who I did a webinar with not that long ago, uh, just a few weeks ago, called Peter Middleton, really well known as a man who lives with younger onset dementia. He put it perfectly. His his point of person-centred care is I don't want to be the centre of somebody else's plan. I want to direct my own life. Um, don't tell me that I can't go out for a walk on my own because it's too risky. Instead, support me in which to do that. And see when he said it, that hit me like a train because I thought that's it. That is exactly it. Where person-centredness, and you you you mentioned it perfectly earlier on, of whereby the person's at the centre and everybody's gathered around them. So, for anybody sitting listening to this right now, how would you feel if you were to be placed like an ornament in the middle of a table in a restaurant, and you had 20 people just gathered around you staring at you, looking inward at you as the centre of that? You wouldn't feel in control, you'd feel very uncomfortable, you'd feel scared, anxious. Um, Peter also said it was something like, it would be like me going to a dinner party where I couldn't decide on what I wanted to eat. Like, sorry, but why is that? But why does that ever happen? You know, and when does that ever happen? Um whereas when we look at person-led, it's my life, it's my diagnosis, I'm in the driver's seat. But also, if people are behind me, I can turn around at any point. So, what we've done is we remove the person from the centre and we put them right at the front and let them lead. Um, the difference between person-centred care and person-led practice is the fact that we remove care. And we've already spoken about that quite a bit. Um, person-led is about support with the person and them leading, but I I support. Um we need to evolve. This isn't a revolution, it's an evolution of person-centeredness. And I'd probably end it by saying two things. First thing is if talking about person-led gets people uncomfortable, it says more about them. The second point is that Professor Kitwood himself once said, Our knowledge and our and our care of dementia will continue to evolve as we are led by those who are living with a dementia. That's all I'm doing.

SPEAKER_02 1:00:18

So here's the final question, and it's from me now at the bag. Before I ask it, thank you so much. Thank you. What an interview. What an interview. Out of all the discussions that we've had in the past, this for me has been the most relaxed, impactful, and um in terms of me gaining more knowledge um about the work that you do is just unsurpass the thank you. With all that in mind, and bearing in mind that we're hoping lots of people will listen to this and be moved to some sort of action. Who would you like to dedicate this interview to?

SPEAKER_01 1:01:08

I'd like to dedicate it to those who feel they do not have a voice. Um those who feel undervalued, those who feel scared to speak up, um, because that's pretty much that's pretty much been me, of whereby, because of all the things that we mentioned throughout this podcast, um, he doesn't really know what he's talking about. He doesn't have this or X, Y, and Z qualification. He doesn't have enough experience in that in which to order uh offer an opinion. But when I think back to it, I'll be 37 in August, and 19 years of those 37 has been spent kind of devoted to supporting um people who are living with a dementia and older people, but actually, when I think about it, I was supporting in my own wee way as a young lad older people without even realizing it, and that was when my mum and dad used to take me to their house and sit and ask them questions about their life, or um so and I think the last group would be all those older people who've been so influential in my life. There are so many, there are too many that I can mention. Um, I'm sure we've got plans, Hugmany, otherwise I would have mentioned uh as many of them as I could possibly remember. But there are particular people that just come straight to my mind whereby I never really fully understood maybe what that question that I posed to them sitting in their house would maybe mean to them. Um but one chap in particular who I remember looking at his fireplace and seeing him as a young soldier in the second world war, and me saying, Is that you on the fireplace? And him just picking up the picture and him saying, That's me, yeah. And say, Wow, and were you a soldier? Yeah, I was a soldier. And he then went into this whole incredible story about his World War II experience. Um, it's guys like that that have given me their time that I just I I owe a huge grade of debt to. Um, because without them I wouldn't be who I am today.

SPEAKER_00 1:03:43

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