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| Theme 1: social connection, engagement, and interaction were key drivers of the success of the program |
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| 1P | I changed because of the people in the group, and I think it was useful |
| 2P | Good way to spend an hour or two. Stimulating questions |
| 5P | I just liked it being done. Because it was great to hear, and there were a lot of people there and I think that was nice. I really enjoyed it. I’m very upset that it’s not there |
| 1C | I think he’s quicker to make conversation and to maintain conversation and possibly even initiate conversation |
| 1C | I think that 1P has realised that he can make friends. So there was like a period of time when he finished working to when he started the SPICE group where he wasn’t actually building connections with people at all. But since starting the SPICE program he has built connections and he’s recognised that it’s valuable. And I think that’s overflowed into the other people we meet where he actually voluntarily connects with them |
| 1C | He values I think the connection with the other participants because he can see that they are on a level footing. He enjoyed the laughter, he enjoyed the camaraderie and just the light-hearted banter |
| 2C | 2P really liked the people in the group, whether it was the way the things were structured, or whether it was the participants or a mixture of both. And that’s the only time I didn’t have to put a rocket up in to get him out. It was actually (2P) taking the initiative himself, he kept asking over and over again, what time are we leaving what time are we leaving. So I think the social impact was really important for 2P far more than any other aspect, you know |
| 2C | Thinking back I think one of the big strengths of the program is the inclusiveness. The fact that we all undertook activities together so no feeling of ‘babysitting’ or differentiation. Everyone got to know everyone else and interacted with not just other carers, but the others [in the] group in their own right as people. I think that is pretty unique |
| 3C | It made 3P more confident with speaking to people. I think he’s more outgoing. He’s less depressed. His balance is a little bit better. And I think that made him feel better. Just being with the other people with dementia, he didn’t feel so aware of his, you know, things that are failing on him if you like |
| 4C | The program has changed 4P, like he more feel comfortable to talking to somebody else, more confident and he seemed to be happier. He’s more talkative |
| 4C | We become very close actually. We share a lot on WhatsApp |
| 5C | She became a lot more communicative, a lot more confident. She’s a lot more engaged with, with people around her, and she feels less judged. So she’s actually talking a lot more, even though people don’t understand her |
| 5C | … it’s a program to help the carers and the carers to cope with the dementia, but also to give the dementia patients social connection, enjoyment, yeah .... Laughter. You know, I haven’t heard 5P laugh for years, you know, for ages, that’s just extraordinary you know |
| 6C | She was sort of funnier than actually she is at home. And I thought that helped her a lot |
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| Theme 2: clinicians fostered a positive and respectful culture |
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| 1P | Well, there were people who were speaking about things and talking to us about things. Those people I thought that they were very beneficial to me |
| 1C | … I think he felt quite validated that I can do this. This is something that I’m good at and now somebody else is recognising I’m good at this and he just felt, I think, he felt very successful doing it |
| 1C | There’s no feeling of, there’s no feeling of having to like perform or please anybody. You can just be who you are. You know, it’s okay. Because you guys, as professionals understand that some of this is not pretty. And it’s okay |
| 2C | I think it is a wonderfully constructed program hitting every aspect, incredibly well thought out by people who really care about what they’ are doing, and it’s the care aspect and the sheer dedication. …(clinicians) just wholeheartedly giving themselves and enjoying it on the way |
| 2C | I think 2P felt cared (for), cherished and welcomed, which I don’t think he’s felt on the few occasions that he’s been to other, other similar sessions |
| 2C | Like (the OTs) really accepted people, joked with them, got where they were at and treated them as adults, and as people who were worth having a conversation with |
| 5C | I also think it’s the caring of all of you, all of the SPICE program people. They spent a lot of time listening to her, trying to understand what she was saying and engaging with her. So it’s given her a lot more. It’s given her a lot more engagement with people and a lot more enjoyment of people. She was shutting herself off for a long time |
| 5C | So I loved (the OT’s) approach, she’s very flexible. She you know, she’s not setting standards that people can’t meet. She’s actually understanding exactly where she’s going. She communicated with mum so well, she just really, you know, could see what mum was trying to say. It was lovely |
| 5C | There were some really good questions coming out and there was really good understanding. For example, 6C was saying, you know, sometimes he loses his patience and to say that in a group because you can’t say that to your family. You can’t say that to your friends. It’s something that, that the group allowed you to say |
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| Theme 3: carers were supported with strategies and skills to reframe dementia |
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| 1C | I think it’s given me an understanding that I can choose, if I want to, to build into doing things with 1P and enjoy it rather than just throw my hands up and go ‘too hard’. It’s given me some … strategies that I can go back to and go, ‘Yeah, I think that can work. I’m gonna give it a go.’ |
| 1C | … and information that I had no idea was out there. And identifying things that I had no idea were going to be a problem. But they are and then we have like, can think forward and go ‘okay, it’s not necessarily yet but I know what to do’ |
| 1C | I think the one that stands out would be the dealing with agitation, so that not to take it as I’m to blame |
| 2C | I think a lot of those, the ones on self-compassion and I honestly haven’t had time to look over them, all the notes that we got from those. But I think that there were a number of things there that I can tease out when I have some headspace to do it. … They’re certainly very useful. And I think that’s something that I will use on a future basis |
| 2C | For me, well, because we’ve got this really warm group that we’ve I mean, we’ve been texting quite a bit even since Friday. You know, and I think that will be ongoing, hopefully. So yes, in that there’s a group of people that you can say anything to and it’s okay. And given that, we were all in the same sort of situation here. We’ve got that bond |
| 3C | … just not feeling as quite so lonely and just also the sharing of information. You know, just hearing people talk about different things, sort of may not be what they were talking about, but it prompts you to think in a slightly different way about something, something to attend to |
| 3C | I mean, I know the small groups are out there, but they always seemed like, too hard to get involved in. But, you know, this sort of threw us together and we’ve all been very supportive of each other. It’s been a lovely group. It’s been great. A lot of the COPE program for me was reminding me of things I already knew. So not a lot of that was very new, but that’s still handy anyway |
| 4C | The program, I think, provided a lot of information, and so I learned a lot of new skills to, to support 4P. And I understand more about dementia and those skills, I think [are] really useful for me in the future, now, or in the future. So because I knew more about dementia it means I can [be] able to take care of 4P better |
| 4C | Actually, I learned a lot from them. People sharing and very friendly. I feel very safe to be with them. Yes, I’m not alone. Actually, I feel yeah, somebody’s in for me |
| 5C | But for her it’s engagement. It’s about getting her sentences out. It’s about communicating an idea. And I’ve learned to say that’s good enough, you know, I don’t need to know her innermost thoughts at all. I Just need her to talk and to engage. And I’ve learned that through the program too |
| 5C | The other thing is confidence … you’re never sure you’re doing the right thing. And to be able to sort of get that confidence of yeah, I’m on the right page. I’m doing everything I can, not to be so quite hard, so hard on yourself, and then to sort of understand where it’s going and where it’s coming from |
| 5C | I did learn to be a little bit more patient |
| 6C | Well, I learned a lot to help me look after my wife when she gets, even when she gets a bit worse. Because at the beginning, I got more cranky. And I learned how to cope with it (by) cooperating and so I’m getting a bit wiser. I’m not getting cranky or anything like that. Because of all those things I think back what I learned here in the program, and it has taught me a lot so far |
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| Theme 4: reablement can be fun |
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| 1P | It changed my confidence |
| 2P | It was fun to participate |
| 3P | I suppose you could call it watching the way the other people took up those, those exercises, and the mind exercises more than anything. It was interesting watching that. Seeing how people stood on top of the decisions that were made. But it was interesting then |
| 3P | Yeah, the balloon volleyball. I enjoyed that incredibly |
| 4P | But it’s just that I thought it was wonderful, there were always people dancing and jumping and moving around, a lot of fun |
| 5P | I’d just say I’ve I enjoyed it. And I and I’d love to do some more |
| 6P | Because, it’s good what you, if you see people and whatever you do, it’s not too much. It’s good |
| 1C | He seemed quite comfortable and relaxed around everybody. Which isn’t always the case. There are other places sometimes where I can see that he’s, he’s tense is not really happy to be there, but here he was happy |
| 3C | 3P’s definitely good on routine. And he’ll learn a lot better, and he likes the music … he’s been doing tandem walking at his gym class now for nearly three years and he hasn’t improved. So, but he seems to have improved from this and I think it’s the music part as well, because he’s not aware that he’s doing so much |
| 5C | The exercises were really simple, and they were routine. So they didn’t vary from week to week. There was a lot of positive support. The music was a really nice touch. There was a lot of engagement and the emphasis was on fun. … it was a good program instead of, if you go to a normal one, it’s all about achievement and this one is much more about engagement and fun |
| 5C | And so every week she’d come back [from CST], she said “that was so much fun.” We had never laugh(ed) so much. She couldn’t explain what she did. I had no idea what she did. But it was a lot of fun apparently |
| 6C | The exercise because we haven’t done much exercise in the last few years, even so she doesn’t like it. But when she came, she didn’t like to come here, but when we were here she actually enjoyed it and I was quite surprised that she could do it |
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