The June webinar was held at a slightly earlier time than normal due to the University of Worcester graduation ceremony for three of our PhD students, but that didn’t stop a good group of us getting together to hear directly from people with dementia and their family carers about their experiences of Meeting Centres.
In her welcome, Professor Dawn Brooker reminded everyone that the Meeting Centre ethos puts members and family carers at their heart, and aims to help them adjust to the changes that dementia brings. When this session was originally planned as part of a face-to-face conference, the intention had been to support people who attend Meeting Centres to involved in person and share their experiences. While current conditions mean that we’d had to do everything online, we still hoped to be able to capture a flavour of that input in this webinar.
The UK Meeting Centre Support Programme has been supported by two key organisations to ensure that the views of people with dementia and family carers are captured and represented in our research. The first organisation is Innovations in Dementia, represented by Damian Murphy, who supports Dory Davies and Dreane Williams to be part of the project’s National Reference Group. As Dreane was not able to be part of the webinar, her thoughts were shared by Damian. The second organisation is Together in Dementia Everyday, represented by Ruth Eley who was sharing the thoughts of family carer Ann Caldwell, while a second carer George Grindlay was part of the webinar.
The webinar took the form of a discussion with questions posed by Dawn, and the following attempts to capture an overview of the points discussed. We highly recommend watching the recording of the session as it’s far more powerful to hear what was said in people’s own words.
What has been your involvement with Meeting Centres?
Dory used to attend a Council-run day service twice a week, but it has been closed since March 2020 due to the pandemic. While it is not a Meeting Centre, it appeared to have some similarities. Reflecting on her experiences, Dory said that a Meeting Centre is a very important place if it is run properly. When she attended her service they would plan activities and what to have for lunch as a group, before going to the shops and buying the food. Meals would be cooked and eaten together as a group, which crucially included the staff. An important point for Dory was that everyone used the same crockery and cutlery, rather than staff having separate equipment. As she said, “we were all just a family” and there was “no us and them”. She appreciated the people at the group who were there to help with any problems, and who were also able to tell when things were not going well for her or she was having a bad day. There was also a quiet space available where individuals could go to get away from people if they needed. Dory also enjoyed being able to get involved as an extra pair of hands and help out, as she likes taking care of others.
George’s experience was different as although his wife used to go to Kirrie Connections Meeting Centre before the pandemic, he only really joined the Meeting Centre himself during the first lockdown. He had previously used the time when his wife was at the Meeting Centre as a form or respite and a chance to get some space for himself. He reached out to the Meeting Centre when he was at a crisis point and felt that he couldn’t cope with caring for his wife. He received a lot of support from both the staff and other members of the carers group, and was reassured that what he was experiencing was normal. It was good to have the opportunity to meet people who were having similar issues.
Despite not being able to attend the Meeting Centre in person, George has been joining in with health walks organised by Kirrie connections and he and his wife have made friends with another couple. He feels that the Meeting Centre is about sharing things, and is somewhere he can reach out and not feel judged. As he said, “I feel safe”. There was a real appreciation of the work that the Meeting Centre has been doing, and everyone is approachable and can understand or ‘suss out’ how he is feeling. “Without the Meeting Centre we wouldn’t be where we are today”. It has allowed him to allow his wife to express herself as she has taken part in lots of different types of activity and learned new skills. Reiterating what Dory said, George felt that the Meeting Centre is a place where everyone shares experiences and there is no them and us, no uniforms, and no differentiating between people. This is important as it means that everyone is treated the same and “makes you feel part of a family”. Strangers have become friends, and he feels able to say what’s going on without worrying about shocking others.
Dawn acknowledged how difficult it can be to ask for help, and that if you do not get right response it can put people off and make them less likely to ask again.
George agreed that taking the first step is very hard. It also means that you have to face up to the fact that you are a carer, which can change the ‘husband and wife’ dynamic. It is important to realise the changing role though.
How has the last year been during lockdown?
George reflected on how the lockdown has meant that he and his wife have been together more often, so conversation and communication with the Meeting Centre has been vital. With the Meeting Centre being closed all established routines have been disrupted which has been upsetting for his wife. However, the Zoom sessions by Kirrie Connections have helped to re-establish some form of a routine and also give him a bit of a break at the same time. George has been able to take some time out, even just for an hour, while his wife is in an online session.
For Dory, her group also closed, but her experience was very different. She has not had any support during lockdown which has been upsetting for her. There have been no phone calls or emails. She has missed having a routine of going twice a week, finding that she is now more likely to get mixed up with the days. Dory lives alone and admitted that she did get quite depressed. However, other forms of support have helped her out during this time. She managed to get an allotment which has really been beneficial, and she has also had support from her fellow ‘Zoomettes’ (a group of ladies living with dementia who have formed an informal support group on Zoom) and Dementia Diaries [add link]. Dory felt that while Zoom has been a life saver, you can get “Zoomed out” if do too many. She also prefers being outside, so there are some Zoom sessions that she won’t miss having to attend! (not the Zoomettes, obviously). Dory ended by acknowledging that she has lost confidence during lockdown, especially in terms of getting out and about using public transport.
Damian shared some thoughts from Dreane, which largely mirrored what had been said so far. Although Dreane has not attended a Meeting Centre, her reflections focused on what works well with other support she has received such as a dementia café she used to go to. She felt that it is important to have a “sense of belonging”, and a safe space where you can be open with others. She had been in quite a dark place, but good support through the online groups, in this case the Zoomettes, helped her to realise that she has still got plenty of life to live and a lot to give. Being part of a group which includes people with dementia and family carers is also good as there are moments where you can see that other people are going through the same thing as you. Dreane said being able to share with carers has been equally beneficial, as she can share her perspective as a person living with dementia. It was important for her to see it from the other side too.
Ruth, on behalf of Ann, highlighted that while taking a break is really important for carers, they need to know that it’s also going to be a positive experience for the person they look after. If not, the carer will spend the time worried and anxious, rather than actually getting a break. For Ann, Meeting Centres offer the best of both worlds as her husband is able to be part of the Meeting Centre while she is supported in the carers group. Importantly, she doesn’t feel on her own. Ann’s husband was initially reluctant to go to the Meeting Centre, but settled down and enjoyed it once he got used to it. When it closed during lockdown it was an issue as it disrupted their routine. His condition has also become worse during lockdown, and Ann is worried about how she will encourage her husband to go back to the Meeting Centre once it reopens as he may not be able to appreciate that he will benefit from it and enjoy it. Getting out and about again is also hard as we come out of lockdown, so Ann suggested that continuing to offer online support alongside face-to-face contact could help while people get used to going out again.
This led nicely on to the concluding part of the discussion where people were offered the opportunity to say what they thought the key messages were to take forward, and What meeting Centres should bear in mind over next couple of years.
George reiterated the previous point made by Ann, saying that there is likely to be a lack of confidence following lockdown, so there should be some form of continued support mechanism as people start to go back to Meeting Centres in person. He also noted that as Kirrie Connections Meeting Centre has moved to a new premises during the pandemic, everything will be new for everyone. For him, the key to help people adjust and settle in is to provide routine, continuity, and laughter, as well as treating you as a normal person. Providing tasks and activities to help maintain memory as well as develop new memories is also an important part of what Meeting Centres have to offer. George concluded by highlighting that the Third sector needs to bloom to continue supporting services such as Meeting Centres as they are not the sort of support that the NHS will provide. For him, it is vital for Meeting Centres to “keep going and keep going well”.
Dory felt that coming out of lockdown it was important to move forward in small steps. Even being around a few people can be more than we’ve been used to over past 15 months, so be aware of how people may feel and react. Take time and build up slowly until people have their confidence back, rather than overloading them. She has decided not to go back to her local Meeting Centre when it reopens, partly because she has been disappointed by the lack of support they offered during lockdown, but also because many people who used to attend or work there will no longer be there. She is however hoping to set up her own group in local area, and we have no doubt she’ll succeed. Dory ended by reiterating that it’s vital to keep people involved and together, saying “we’re all unique and wonderful but together we’re a masterpiece”.
Dawn brought the webinar to a close by reiterating that there is a need to recognise that we’ve all been through a lot in the past year, so we have to support each other emotionally, socially and practically.
Although there was no time for a formal Q&A session at the end, discussions on the chat had been very active with lots of networking and appreciation for the work being done by Meeting Centres during lockdown. There was a sense of disbelief about the lack of support experienced by Dory during lockdown following the closure of the service she used to attend, with people saying that Meeting Centres had been very different. For example:
- At Kirrie Connections “alternative out of the box thinking support came into play very quickly”
- When Dementia Matters in Powys closed the doors of their Meeting Centres it was “at the same time as bringing in new support, telephone calls, virtual meeting centre, online carers support groups, online sessions for men living with dementia, Welsh language support, newsletters, cards, garden visits, garden tidy up, knit ‘n’ natter online, armchair exercise online.” More recently, staff have been starting to take people out over the past month to help address anxieties regarding social contact. “Now we have dipped our toes in and gone out it has helped to reassure people that you can get out safely, we are also working with Social Care Wales and have produced a series of videos showing people what changes there are in the community (e.g. a trip to Tesco, pointing out the sanitisation areas etc). Offering 1:1 support to simply go for a walk with an individual can also be a helpful level of support to help get people back out”
So thank you to everyone for an “emotional, inspirational, amazing session”, and we look forward to seeing you at our next webinar. We’re taking a bit of a break over the summer, but will return on 24th September for a session titled ‘New kids on the block.’ It’s not a boy band revival, rather Graham Galloway from Kirrie Connections Meeting Centre will be hosting a conversation with people who are just starting out on their Meeting Centre journey – register now!
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