Background
Methods
Participant recruitment
Inclusion criteria
The interviews
Data analysis
Results
The carer participants
n = 11 | Carers (%) |
---|---|
Age in years (categorised) | |
41–50 | 2 (18.2) |
51–60 | 2 (18.2) |
61–70 | 3 (27.3) |
71–80 | 4 (36.3) |
Gender | |
Female | 8 (72.7) |
Male | 3 (27.3) |
Ethnicity | |
White British | 8 (72.7) |
Black British | 2 (18.2) |
South Asian | 1 (9.1) |
First language | |
English | 10 (90.9) |
Bengali | 1 (9.1) |
Relationship to the person living with dementia | |
Spouse | 5 (45.45) |
Adult child | 5 (45.45) |
Friend | 1 (9.1) |
Length of time caring (years) | |
1–5 | 7 (63.6) |
6–10 | 3 (27.3) |
11+ | 1 (9.1) |
Themes
Carers’ lives
Similarly, another carer who looked after his mother continued to go to the café even after she passed away.Pamela ‘… I feel I’m all alone in the world. Struggling along with it. I gave up, I had a really nice job as a carer and I had to give that up because I was caring for my husband.’
A daughter, caring for her mother also emphasised the challenges of trying to keep up paid work whilst supporting her mother and taking her out. In contrast to other carers, she emphasised that reason she goes to the café is for her mother’s benefit and she would not attend a café alone.Walter: ‘… but the Saturday café is um, well you see what I want, my purpose now is just to meet people the same.’
Moira ‘Not me, I wouldn’t, no. I don’t really feel the need, you know. I can imagine there are some carers who need time apart and probably need that, yes release and I think I’m aware of somebody maybe whose husband’s gone into a care home recently and so they still go, but no I wouldn’t do.’
An opportunity for enjoying themselves and to switch off from being a carer in a safe environment
Although some carers were unsure whether the person they supported was enjoying themselves, others were confident that they looked forward to and enjoyed attending the cafés. Knowing that the person living with dementia was enjoying themselves was very important for some carers.Rachael: ‘… I get a lot of enjoyment, I do, I get a lot of laughter out of it, and um I find that I’m enjoying something, which is beneficial to my mum and to others, that’s what I get out of it.’
Importantly for some carers, cafés provide an opportunity for them and the person they supported to get out of the house, giving the day focus. It was something enjoyable that they could do together and was seen as an ‘occasion’.Charlotte: ‘My husband enjoys going, he looks forward to going, I mean when he gets there he can’t wait to get back out again but every time he’d looking forward to it, it’s um, sometimes he’s happy to go and sometimes not so much, but he does go so.’
Dementia cafés can offer relief from caring for carers by reducing the dependency of the person with dementia on the carer. Some of the cafés attended by the carer participants were organised so that carers met separately from the people with dementia. Carers could relax and be cared for themselves without having to worry about the person they cared for.Maria: ‘… she likes the idea that we’ve gone somewhere together, like we’ve gone out together, like for her it’s like doing something with a friend and it’s different when someone just comes round for a cup of tea and you’re in your own home, there’s less of a, there’s less of an occasion.’
Whilst there, little is expected of carers and those they care for in terms of how to behave and whether to join in with activities or not. Especially with the provision of food and drink, carers can also feel ‘looked after’ and supported by the volunteers even if they did not want to be sociable all the time.Diana: ‘… she can go, quite often she’s on one table and I’m on another and it’s a safe environment.’
Carers had mixed opinions about when attendees were most likely to gain the most benefit from going to cafés. Attending soon after diagnosis seemed to be important for some carers who said that immediately after the diagnosis they wanted to know more about dementia and by attending the café, they had gained a lot of useful information. However, several emphasised the value of continuing to attend even when the person with dementia had lost their speech and could no longer actively participate.Moira ‘… you don’t have to do a thing, what do you want for tea, coffee and then there were sandwiches and cake and me, I suppose I didn’t appreciate how much I’d been doing until that happened because you just, you sit down and think, oh this is nice, so that was you know massive … really, really appreciated that. … you’ll sit down and relax and, you know, enjoy the fuss being made by the volunteers and the staff to give you your refreshments and so you just relax, I mean for me I would quite often not want to socialise actually because I’ll be exhausted and so it was in many ways fine with me.’
Some carers emphasised that an important aspect of the café was feeling safe and having trust in the volunteers and coordinators. This meant they could relax and leave the person they cared for allowing them, for example, to go and spend time with other carers leaving their loved one with the café organisers and volunteers. Simply having other people there enhanced this.Maria: ‘I guess the impact of that would have been greatest at the beginning, but actually at the time I didn’t realise that that would be the benefit, it was only later on I kind of thought to myself you know, it’s just been really useful for me to meet other people with dementia so that my knowledge of the condition is broader than just my mum.’
Victoria: ‘Yeah it’s safe and there are other people there. You know I’m there with him but now we, I mean we have to go everywhere together. I can never leave him in the house, you know, in the house on his own again.’
Normalising living with dementia and being accepted
According to some carers, cafés helped the person with dementia just be themselves.Diana: ‘… my mother is a very sociable person, out of all of us in the family she’s the most sociable really and she’s the one who suffered the most from not going out and her friends didn’t seem to understand that… whereas in the memory cafés… and there are different people there and people who don’t mind if you’re saying the same things all the time.’
Rachael: ‘… when we go in there, they just have maybe sandwiches and a cake and cups of tea and juice and things, it’s not the quantity of what she has … she just, she’s just being herself, she gets to be herself.’
For one carer, it allowed her to learn about her mother from people who knew her long ago.Christopher: ‘She enjoyed it… she could hardly dance because she had a stick but she loved dancing and singing… and the next minute she fell back and sat on someone’s knee… always laughing.’
An almost inevitable aspect of attending cafés is comparison of yourself to other carers or comparison of the person they support with others with dementia. One carer highlighted how attending a café soon after her mother’s diagnosis was very useful because it helped her realise that people with dementia are actually quite ‘normal’ and not usually aggressive. However, this comparison could be a double edged because it also gave her a glimpse into what the future for her mother might hold as her dementia progressed.Rachael: ‘I get to meet some of my, my mums old friends, you know so … she’s known them and they know, they know different parts of my mum, different, wherever they know my mum from, they will you know ‘Oh your mum is a lovely woman, I’ve known her for years’ or ‘I’ve known, do you know how long I’ve known your mum?’, it’s like, ‘Oh yeah, OK’, so out of it I get a lot of enjoyment, I do, I get a lot of laughter out of it, and I find that I’m enjoying something, which is beneficial to my mum and to others, that’s what I get out of it.’
Maria: ‘… it’s just been really useful for me to meet other people with dementia so that my knowledge of the condition is broader than just my mum, you know. … but yes, I guess at the beginning it was like ‘Oh you know, people with dementia are normal people!’ You know, they just struggle with certain things, but they’re just normal nice people … Yes, but that does continue to be reinforced every time we go.’
Peer support
Some carers highlighted the benefits the person living with dementia could gain by being with other people with dementia.Pamela: ‘You can actually discuss your situation with somebody else, who has got… in the same position as you are.’
Vera: ‘Even though he does not participate, he knows something is going on round and he could see other people … Ah, you know in the same category as him.’
Importantly, when asked why they had initially attended a café, with the exception of one carer, most carers said because it had been suggested by a health care professional, rather than because they wanted to access peer support.Maria: ‘… it’s not, it’s not the activities particularly … she’ll take part in stuff, but it’s the sense of being with other people and getting involved in something rather than the particular thing that’s going on.’
Charlotte: ‘I’ve got a feeling it might have been (recommended by) the nurses at the or it could have been the social worker. I’m not sure, somebody who was coming to see him at his flat mentioned it, and said about it, and said ‘Why don’t you try it?’ So we thought we’d try it and um, and that’s what we did, and we’ve been going ever since.’
Developing social networks and reducing social isolation
Attending the cafés sometimes led to the development of friendships. The fact that carers often met up with the same people each time often allowed these relationships to develop into friendships.Walter: ‘I mean it is important, well it’s more of a social hub really.’
Importantly, some carers said that going to cafés helped reduce social isolation both for the carer and the person with dementia.Pamela: ‘I’ve made quite a few friends and I’m quite good at remembering their names and one or two have asked for my phone number and I’ve asked for theirs and we do occasionally phone up, you know, I’ve said to them ‘Oh, come along.’.
One of the cafés had a number of male carers who regularly attended, and who over time, built up an informal peer support network.Ranni: ‘(I enjoy) … being in there, some nice food, talking to people and looking round and thinking who is doing what, and I become the part of the group, I’m not kind of carer sitting in the corner, I’m just become part of the whole thing, that is quite interesting.’
There was an acknowledgement of how as men, there were differences as well as similarities in their experiencesChristopher: ‘Yeah, when I see George, that’s the other one there… and of course I, I pick another carer up and go to the dementia place on a Thursday, we go down to the Age UK for dinner and I give them a lift. I said I’m going there, you might as well get a lift … it’s nice to see him and have a little chat.’
Interestingly, two of the participants were former carers and both were men who continued attending the café over a year after the person they cared for had passed away. The reason for this was primarily social.Christopher: ' …different, like Peter down there, he goes on about his, his wife … he had all the help going and I never had that. … he used to go down other places because he got it good for him, you know, I don’t blame him, but, you know, he knew all the ins and outs of everything and he knew where to go and all this, but it’s good … I get to know him quite a bit more now because I see him quite a bit … I see another carer, he looks after two elderly couples, you know, one’s coming up to a hundred and the other ones in the mid-nineties … which I think is very good …’
Walter: [I’ve] ‘reached the end of the road with it and I’ve got to live my life now as happily as I can … to put it bluntly it’s just another little diversion uh in the form of socialising with people… I just do things now that please me, I like meeting people, talking to them, and um, it doesn’t mean the same as it did.’