We have this saying in the dementia community, you’ve probably heard it, if you’ve met one person with dementia you’ve met one person with dementia, because we’re all different.

Keith: It’s a group of people like myself and we go there and we have a discussion. And what happens, when we start off going, you take your partner with you and then we go into separate rooms where your partners go in, your partners go into one room and they talk about, about us.

Partner: Carers.

Keith: Carers, yeah, and we sit in a room and talk about what we’ve been doing, and what have you, and what our carers do for us. And it’s quite interesting really listening to what other people are like and how far they are down the road of dementia and, because everybody’s different and it’s all down at different stages. So, it’s quite interesting, yeah.

Yes, because there’s, well about eighteen or nineteen of us and we go there and just, what it says, sing, you know. We stop for a coffee, for a break, and what have you, have something to eat and a sandwich or something and a drink, and what have you and start again and do a bit more and then when we’ve finished, we come home. It’s nice, yeah, it’s great. They’re nice people, friendly, and they’re the same, the same like me, you know, got dementia. So, we’re all mixing together and, you know, talk about different things, how it’s affecting different people because everybody’s form of dementia is different and it affects them in different ways. So, it’s nice to listen to other people what they’re doing and, how can I put it? How far down the line they are in their, with their dementia.

Well funnily enough, when the group started, I was ill, so on Monday was my first attend. So, I, because I’ve been looking for something like this anyway, I thought OK, I’ll go, I’ll come along and. It was better than I thought, it was better than I thought, because it was fun and nobody’s dwelling on “I can’t remember this” “I can’t remember that”. We were taught different ways of how to relax and how to move on, not to sit down and think that “I can’t remember this or this”. So yes, it was, and there was people there I know, including family member, so [laughs].

So yeah, I mean people were singing and dancing.

Oh gosh, yes.

And, you know, that looked, that looked fun and quite relaxing.

It was. One of the things that she was doing, when she did the [hand] cream. I could not close- I closed my eyes for a bit but I had to open it because I was so relaxed, I would have fall, fallen asleep and started snoring, so [laughs]. I had to keep my eyes and do that yes.

So, you were saying it was your daughter who suggested you go to the meetings at [social care support centre].

Oh yes, she, she, yeah, she.

And that’s the memory hub, is it?

She let me, she knows everything, being a health visitor, she is a manager at the [specialist] Hospital also. She knows everything going on. So, she let me know and when she come last night she say, “Did you go?” I say, “Yes,” you know. She says, “You must not stop unless they said you’re not coming back, you must go.” Sometime it’s Monday and Thurday and I always try to go both of them, you see, this time I go three because I went with my husband, Tueday.

Oh yes, mm hmm.

Yes.

And so, what do you, what benefit do you get from going there, do you think?

You feel more; I crayon, I crayon nice; if you round here you’ll see what I drew and see my name there [laughs]. I crayon and I talk with my people around me that and we talk all, we talk all about our life story from home. I were talking to a little lady name of [name], she from Grenada, you know, and I, so often I meet different ladies and we all talk where we come from and things like that, you know. So, I keep in touch and I like to go. I don’t want to miss any, you know, because I think it’s doing me miracle, it’s doing me miracle, because I feel, since I start going, I feel a different person. I used to have pain in my legs and my feet, and the exercise I’m getting here; I know I do, I used to go to swimming every week but when the pains are start all over me, I start to drop back in the winter and thing. But since I start going there, I’m starting back again.

So, what do you do at that group, Derek?

Derek: It’s, that’s pretty much the same, we go for a walk quite often, we go and sit in the playing; what do they do? Cricket, not cricket. 

Lorraine: Skittles.

Derek: Skittles.

Lorraine: Skittles you do, don’t you?

Derek: Yeah, skittles, sort of thing like that, yeah.

Lorraine: Yeah, you’ve walked up to [name] Park, don’t you, in [town]?

Derek: Yeah.

Lorraine: Because I’ve not been in there and he tells me it’s lovely in this park.

Derek: Yeah, yeah.

Lorraine: Oh, you’re doing a picnic in the park in a couple of weeks aren’t you?

Derek: Yeah.

Lorraine: And something else there, I forget what they were; was it, some sports thing, I forget [laughs].

Derek: Yeah.

Lorraine: I forget [laughs].

Derek: You roll it and it’s on the floor.

Lorraine: Oh bowls.

Derek: Bowls, that’s it.

Lorraine: Green bowls, bowling.

Derek: Game of bowls. I’m quite good [laughter].

So, you were telling us that you, you go to the [Support Group] and you, and you like meeting all the different people there.

Yes, yeah, yeah, they’re a nice crowd there, they really are. You know, everybody comes in and does their thing which, you know, is great and, you know, and I like going there [laughs].

Well just the, at the club here, it’s quite nice there, nice crowd. There’s a lot going on and, which is, which is nice and, you know, so it’s; I can’t do as much nowadays as I used to do.

I saw you dancing. Oh dancing, right.

Oh [laughs].

You were dancing in the middle?

Yes [laughs] well, you know [gestures dancing] [laughs].

I mean do you enjoy going there, it’s quite a, you know, meeting other people, is it something you’d recommend?

Tony: I enjoy listening to other people I think is about it, and sometimes the game, card games and things are all right, but. Mostly I like, when other people are talking, it’s interesting, and I suppose meeting other people really because you do miss that.

So, you’re interested in sort of other people’s activities and lives and what they’ve got to say?

Tony: Well yes, different views, yes, yes. And that, and because you hear it on the television and things like that it’s not quite the same as, you know.

What do you mean?

Tony: Well, when you listen to television programmes, if we’re watching television in the evenings, you get a television play, people doing different things and people are interacting with each other. It’s not quite the same as real people, if I can put it like that.

Moira: You mean chatting to other people?

Tony: Yeah, or even listening, yes.

Well, you obviously we met at [support group]; so, do you tend to go there quite often?

Barrie: Every week. Two.

Pat: We do, don’t we?

Barrie: Two, two, twice.

Pat: We, yeah, we do.

Barrie: There’s the activity centre.

Pat: Yeah.

Barrie: On a Tueday and Pat goes and joins in everything they’re doing there, and then there’s the café which is on a Thurday morning.

Pat: Yeah, that’s on there as well, yeah.

So, what do you do on a Tueday, Pat? Do you join in with the activities?

Pat: It’s activities I do, yeah, over there, yeah.

What do you like doing especially?

Pat: Oh, I can’t remember, but I do like it, I do like it, yeah, it’s good, mm, yeah.

Barrie: You make biscuits and cakes.

Pat: Yeah, we do.

Barrie: And you play games. They have different activities sort of every week so it just varies a bit. Dominoes and jigsaws.

Pat: What do you do while I’m there?

Barrie: I’ve got a model train set in the roof.

Pat: That’s it, his train, his train.

Because of course the other thing we did recently was we went to the [museum] Exhibition.

Exhibition, yes, yeah.

Windrush Exhibition. It was the dominoes that reminded me because there was.

That’s right, uh huh.

So how did, did, how did you find that? Did you enjoy going there or? 

Yeah, it was, it brings back a lot of memory, yeah, a lot of memory. They, they call them grip but it, they’re suitcase now, they call them grip, so I, I, I had a little brown grip, something like that, that I fetch in this country [laughs] it really does bring back memory. Everybody used to just fold their clothes neat, neatly and, you know, set it in it and set off, uh huh.

So, so that fairly small suitcase, grip [laughs] would, would be, that would be all you would have arrived with?

Arrived with; and, and a little bag with shoes and thing like that. All the clothes were, were really, you know, fold neatly [I laughs] in the suitcase and you’ve got a bag, a, handbag, your shoes and thing would, would be in it, but all the trousers and shirt; because we, we never wear a suit in Jamaica, I only get a suit when I was coming here.

So, the other thing you go to is the memory hub that they’ve just started at [social care support centre].

[social care support centre], yeah.

And how did you hear about that?

Well actually [facilitator] sent me a text message.

Oh.

Yeah, and I thought I’ll go and, you know, listen, go and listen to it, to what they’re saying.

Because they; what sort of things do you do there?

We talk about things, you know, that, that you used to do when we were young and things that we, we remember really, we talk about it.

So, sort of reminiscing as well then? 

Yes, yeah, mm.

And, and do they do any other sort of exercises or tips to help you with your memory?

Yeah, they, they do old songs, you know, old, old songs that bring back memory and talk about where we used to go, and this were some from, about Jamaica and the market or different places through the different Caribbean islands.

Yeah, that’s a group, I pop along there sometimes but I don’t feel [laughs] I’m over sixty or I’m well over sixty. There are other support groups, I’m trying to think. Yes, there’s the, a local café they, we meet there. I think that is part of the Speak Out with Dementia really, but it’s more of a social event, we meet for coffee and cake. Just have a good old chat, and the two people from the, the Switchboard are there, [name] and [name], and it’s really good to have a chat and pass on what’s happening to us from day-to-day.

So, I’m trying to sort of understand what it is about kind of talking to other people with dementia or memory problems, and you’ve said a couple of times that you all, sort of, share how you’re getting on and compare notes sort of thing. And I’m just trying to sort of understand how you think that, how you feel that really helps you all?

It’s something that comes naturally rather than me say, “Oh we ought to share our experience and how are you finding day-to-day life?” That is just part of the, the social contact. I think the most important is the social contact, having a good old chat that, with people who are experiencing life in similar ways to yourself.

Yeah. Yes, I think I’ve heard that from other people that it’s nice to be in sort of a space where you feel like you don’t kind of have to [laughs] I don’t know, maybe cover up your memory problems, you know, you can feel free to be yourself, kind of thing.

Yeah. I mean we don’t say to each other “oh how are you?” and “how are you nowadays?” and “how are you getting on?” da-de-da-de-da. It’s a social event, it’s quite important to people who live on their own, I think. I’m very lucky I’ve got a partner I live with, but lots of people don’t have that. Lots of people don’t have social contact perhaps, so it’s a good time for us to, to get together.

So, what sort of things do they put on at that group?

Oh, it’s Pride in Ageing and I do take part in their events there, but it’s not necessarily geared to mature people. The reason why is they have got; most of their advisors and most of the people there are much younger. And when I compared them to myself when I was younger, I used to consider I have got a life ahead of me. The concerns of old people were only there because my job demanded it, otherwise it never affected me.

So, you feel that the advisors and volunteers at Pride in Ageing, although it’s Pride in Ageing they, the advisors are younger and they don’t necessarily connect in a way that’s entirely supporting?

The connection is there; how serious is that, the depth? I mean, the reason why, again, there are very few of us who attend there of the same; I use the word ‘vintage’ rather than age, because vintage sounds like wine and it’s far more delectable than ‘age group’. People of our vintage, they either have a life of their own or family. Even though they may be gay or homosexual, their concerns are, this is not their main concern, they are very subsidiary, because they have got other interest in their lives. So how much attention can one give of one’s self, how much time can one give of one’s self, and when one is our age, one has got things: partners or, like yourself, other strands, other aspects to get one’s attention. 

So, I think when you said this is not their main concern, do you mean around, around ageing and around potentially memory problems? That’s not all you’re thinking about because your, the strands to your life make up a much more complex identity than just whether or not you’re an older person?

Yeah, yes, yes, you have said that correctly, you have expressed it correctly.

You mentioned earlier that you’d gone along to some support groups?

Yes.

And are you still doing that?

Well, I needed I keep thinking that sometimes I should go up there and I’ve sort of been in contact, occasionally, with other people there. And I keep thinking, yeah, next time we’re in London. Well, I don’t think they have them that often. I think it’s about twice a year and I’m kind of vaguely allergic to London, as most people are that live in the country. It was very helpful. I haven’t gone back to another one because, oddly enough, all I needed, it seemed to me, that big dose of “there’s other people in the same boat and I’m going the same way” you know. There was one, I don’t know if she was a school mistress but in every respect she appeared to be a school mistress, who had to have someone to help her dress every day. I don’t.

I go there on a Wedneday and a Friday and we do different activities, which is Dementia [support], and what have you, and it’s very I like going there. Meet people like myself who have got dementia, some are a lot worse than me, some aren’t as bad as me, and we do lots of different activities. We play snooker, table tennis, cards, dominoes, quizzes, a bit of colouring in and some, on some things, it just depends what they decide to do really. But I find it enjoyable; it gets me away from Sandrea so Sandrea can do her own thing rather than looking after me [laughs]. Yeah, it’s, it’s different, you know.

Well, that sounds very good.

It is, it’s very good; and I’ve learnt a lot from going there, because they’ve got, I thought “all right, I’m not too bad” but when I see people who go there are a lot worse down the line than what I am, I think well one day I’m going to end up like that. So, I’m trying to make the most of what I can while I can and, and I’m not doing so bad, I don’t think, touch wood.

Oh, that’s good then. So, you take, you take that as a positive really about, that you’re, you know, you’re sort of embracing what you can do now?

Oh yeah. Well, you’ve got to use what you’ve got and, all right, I don’t know, nobody knows how long they’re going to live or what’s going to happen in the future. You’ve just got to make the most and the best of what you can while you can. And that’s what I’m trying, well that’s what we’re trying to do.

Well just give, take each day as it comes. They’re not that far advanced. They don’t want groups, they’re at a stage where they don’t want groups with people that are, have got advanced dementia. And that’s why I started the group. I’ve been to a group with people with advanced dementia, I don’t want to see it, that could be my future and I don’t want to see it right now. Years to come, yeah, my husband might take me along to a group like that, that’s entirely up to him. But for now, no, we need an active group in which we can participate actively, make decisions in that group, choose for ourselves.

I realised quite early on, a few years ago, that [city] doesn’t actually have any groups for people living well with dementia. The other groups they run are for people with advanced dementia. So, I work with a lady called [dementia coordinator] who is Dementia Friendly [city] coordinator, and we got together with her and we decided we would operate a group. [city] Alzheimer’s UK have long been thinking about running a Dementia group, as they called it. So, we got together and we advertised and we’ve set it up. We started off with two couples and myself, but now we have twenty people coming out in total every second Thurday.

Oh, that’s a really good service, isn’t it? And are they the same twenty people each time, or do they?

No, same twenty people. It’s gradually, each week we’ve had somebody new coming along and we’ve now got twenty people, not all with dementia, half, slightly more than half with dementia, with their friends or their wives – that’s generally it. And we’ve decided to stop at that number because we’ve really gelled well together. The people are, particularly the gentlemen and myself, are comfortable because they feel that they are with like-minded people and they’re not afraid to say anything in case, you know, in other groups they would be frightened they would be laughed at, thought ridiculous, and they’re not frightened to speak up in this group and that’s why we started it. So, we figured twenty’s enough. We get on really well together and it’s comfortable, and we all thought to add to the group it’s going to get a bit unmanageable now.

So, it’s just a coincidence that they’re all men?

Yes, totally coincidental [laughs].

And do they, you said that they come along with their friends or their wives. And do they stay together or?

No, we all stay together. Initially [dementia coordinator] and I had thought that we had to be really careful not to let carers take over a group but we’ve found that that’s not the case here. And we did think about separating them but it’s not necessary, it just gels really nicely.