Participant story: Roberta and Lindsey
This blog post tells the story of Roberta and Lindsey – it explores the development of their relationship, the enjoyment and frustration with the activities, and the agency and motivation shown by the care staff who took part in the project. Culture Box heavily relied on the labour of staff to deliver the activities to the residents as the provision from the research team was virtual and through the post. The team are incredibly grateful to all the members of staff who took part in the project – it could have not been achieved without their dedication, motivation, and hard work.
The story has been anonymised and pseudonyms are used.
During the interview, Roberta seemed embarrassed and frustrated that she couldn’t remember the specific activities in the boxes. She felt “so daft not knowing things”. However, she did have an overall sense of the project being enjoyable, saying that some of the activities stick with her for a couple of days afterwards:
Interviewer: But would you say that doing these activities on a regular basis has your life more enjoyable.
Roberta: More interesting, I suppose. They make me think of what happen, then I think of it for two or three days afterwards, you know? I enjoy it (unclear) Ha.
Interviewer: So you ended up thinking about it afterwards for a few days.
Roberta: Yeah.
She was amiable and seemed interested in most of the activities on offer, stating that she just wanted to “sit back and try and take it all in”.
Conversation in the interview drew on some of the Culture Box activities, particularly the ones on nature and sounds. Lindsey reflected how the activities had opened up conversations amongst the residents, and how the nature-based activities had really resonated with Roberta:
“Like to have conversations about different things with people, which has led to more things. Roberta, and I spoke about travel after, when we were doing that last culture box, and we spoke about places you'd like to go and that sort of thing. And I think there are, that opens up more possibilities. It just gives me a chance to learn more about the other person. And with it. Yeah. And she said she really enjoyed nature. She loves birds. So then now that gives me the opportunity to maybe set up a bird feeder outside our room or take her up to gardens and that sort of thing.” (Lindsey T2)
She also enjoyed the colouring activities, and Lindsey remarked on how Roberta had become more social and active when joining in with the activities:
“She seems to enjoy it. She enjoys the sort of colouring and and stuff. And in previous times, when I've asked her if she wanted to do something, she might have said no, but more often now she will join in.” (Lindsey, T2)
However, Lindsey remarked that some of the activities had been a little infantilising for the residents, particularly the snowman exercise. Lindsey spoke about the need to get the right balance:
“On the right side of like childish, because obviously, with dementia residents, it's a lot harder to create complex activities. So you want to keep them pretty simple, but then you don't want to be doing stuff that they would be doing when they were in school or, you know, whatever else, and I never want them to feel like they're being patronised, or, you know that they're, you know, being that they're being given the simple versions of things because that's all they can handle.”
There was a clear concern among residents that they might be patronised or infantilised:
“I think sometimes residents are worried that they're going to you know, they're being patronised or they're being sort of looked down on so it's hard It is really hard to find that balance.” (Lindsey T2)
The relationship between Lindsey and Roberta had deepened since the project began. At the start of Culture Box, Lindsey was relatively new to the care home but by regularly spending time on the activities together they had built up a comfortable relationship:
“She's definitely wanted me a lot more since I've started because, obviously, like when I first came in, I was a stranger to her. So she feels a lot more comfortable with me now, which is great. But yeah, and I think she's just sort of started to feel more comfortable around me […] Yeah, I think she's definitely getting to know me better, which is nice. And she's like, starting to find that when she does an activity, it's a chance to socialise”
On the whole, the residents were finding the activities relaxing and offered them an opportunity to build their confidence in their creative skills. The activities offered respite and a positive atmosphere of fun:
“it's a chance to like get to know other people better and just to relax as well because we've done a few colouring things before and every time she's been like, I'm no good at this, but I say it's not for that. It's just to make you feel relaxed and to have a bit of fun together. And I think she's sort of starting to feel better about that now.” (Lindsey T2)
Although Lindsey and Roberta were developing their relationship through the shared activities, coming together as a group or community in the care home was more of a challenge. Pandemic regulations meant that residents were not allowed to mix between floors, and another Culture Box participant now lived on a different floor. This meant that there was little opportunity for wider social mixing:
“I think in regards to like activities, it's made things a lot more difficult. We can't have group activities.”
“Gwyneth is doing them [the Culture Boxes] but she's moved floors, which means they can't she can't come up to this floor now. So we can't do them together at the moment. Hopefully once we've eased our lockdown rules. We'll be able to do that again.” (Lindsey, T2)
Additionally, the usual programme of activities the care home normally provided had been severely disrupted during the pandemic:
“The programme they had before COVID was like, bowls club, knitting club, baking club, like anything you can think of they did Tai Chi, they did, like toddlers and parents and amazing, amazing programmer stuff. And I haven't been able to see any of it. Because all of that stuff isn't possible at the moment.”
For Lindsey, the boxes were a very useful resource – they took the pressure off having to come up with new ideas for activities each week.
“It's really nice to have something set out for me, it's kind of difficult each day to come in and think of something new. And so to have that, like, already set up with, like, a couple of activities and some, like stimulating stuff for them and some information.”
Generally, Roberta felt concerned and worried about the pandemic situation, particularly the fact that it had become so widespread over the recent months. Yet, in the second interview, the regulations had changed significantly. The home was now accepting visitors – something that had changed the atmosphere of the home:
“It’s getting a little bit back to normal for us here. And to be fair, since I’ve worked here Julian, it was in lockdown as soon as I came here so it’s getting better for me to see families visiting again and to get more activities on the go instead of doing one to ones all the time […] It was my first job in a care home so to me, all the residents were here but then certain residents were upset because they were missing their families and things like that. But doing one to ones made a difference for them so that bit made me feel good. But now that I can see families coming back in, I actually see what actually does make them feel good. Because you can do facetimes and stuff like that but sometimes, even my age, technology, you just don’t get it do you?”
Residents were able to see family and friends in person – something that had been sorely missed during the lockdown. Lindsey commented that the virtual and online methods of communication were no replacement for in person visits and conversations.
Activities could also now be done in groups in the care home. Roberta commented that she really enjoyed doing activities with others as “I learn things from other people and I hope they learn things from me.” The reciprocal nature of ‘everyday creativity’ was highly important to Roberta – offering her an opportunity to extend and share her knowledge.
In this interview, Lindsey expressed some difficulties she had had with the project. The first was the challenges in accessing the online content – change in staffing had meant there hadn’t been time to properly engage with the videos and materials on the website:
“We haven’t had a look at it online yet. Mainly that’s because over the last two months it’s only just been me in.”
Also, some of the activities had confused the residents and the staff – particularly the Mendi Lotus activity which had required the use of scissors.
“We didn’t get that at all. And we read through it and to be fair, a lot of them can’t really use scissors very good and we thought it was a little bit delicate so we didn’t do the cutting out bit. Basically because I didn’t understand it.”
Again, the project needed to strike the right balance between capabilities and level of difficulty in order for it not to be patronising and infantilising or too complicated and confusing. Overall, this demonstrates the importance of the support, motivation, and interaction of the staff members – they acted as project facilitators, translating the written instructions, information and guidance into fun, creative, and engaging activities for the residents to enjoy. They worked to shape the project to the interests, capabilities, and capacities of the residents – demonstrating a huge amount of creative agency and flexibility. This story shows that the delivery of the project heavily relied on the creative and person-centred labour of the care staff.