The East Riders is a peer support group for people living with dementia. It’s a space for people with dementia to get together, talk, and share experiences. We meet once a month in Beverley, in the East Riding of Yorkshire.
The group arose from our delivery of the co-produced A Good Life with Dementia programme – a post diagnostic course FOR people with dementia created and delivered BY people with dementia.
The aim of the course was to offer a safe space to address the many unanswered questions people had whirling round their heads following a diagnosis. It’s always a real doom and gloom scenario, a blow to the confidence being given a diagnosis of dementia.
The course is about recovering from that blow and who better to learn from than people who have gone through that and are still here to tell the tale, been there and got the t-shirt. We asked those involved in creating the course what’s the message you want to give to your peers based on what you’ve been through – what is it you know now that you wish you’d known then?
The aim is to introduce hope after the diagnosis. It’s about recovery from that blow to confidence and from the stigma, in the disabling world in which we live. People living with dementia tell you that people change towards you – ignoring you, talking over you.
I remember asking a group of people what the biggest complaint they had about living with dementia, nobody said anything about the organic process going on in their heads and one guy just put his hand up and said “Other people – they test me, probe me, blame me, talk over me, they ignore me, they speak too quickly for me.”
The space provided at the Good Life with Dementia course is there to go over a lot of that and to talk about symptoms as well. I’m not standing there with a list of common symptoms, but asking what happens to you? People realise that it’s much more than just memory loss. We address a lot of issues that people thought “Ah I thought it was just me”, so there are a lot of reassuring moments.
And we have some course materials, for example the book ‘Talking Sense’ about how the senses are affected by dementia, which is written by Agnes Houston who lives with dementia.
At the end of the first course, everyone wanted to keep meeting so there was East Riders, born then. Fortunately, with the commission from East Riding of Yorkshire Council we had planned for this possibility, so the group continues to meet.
We’re part of a UK network of peer groups of people with dementia, the DEEP network. There are now about 80 groups around the UK, so the East Riders group is part of a wider network, part of a national conversation as well as a local one.
The group has been really well received locally and is considered to also be a resource in the East Riding – a group of people with lived experience happy to try out services, take part in consultation, and get involved in research.
For example, we worked on an audit of a leisure centre looking at dementia friendly swimming. We did a walk through with one of the group members, she was able to point out a lot of things that other people don’t think of where signage or instructions weren’t too clear, so we were able to give good feedback and now they are making changes to the layout and the signage – they’re not knocking walls down or anything but it makes it accessible, it all helps.
So it is a support group, but it doesn’t stop there, the group is growing and is part of the regional conversation, and is very much helping shape local services.
Another thing some of the members will be involved in soon is co-producing dementia training. So rather than just giving a few facts about dementia, it is real people with lived experience saying “this is what happens to me, let me say what helps”. So that’s really useful.
You can see the confidence in the group, people are liberated, they tell me it’s changed their lives. Members have found a new social outlet. Getting involved in research and other projects also helps self-esteem, to recover a sense of agency, identity, a voice.
The East Riders session is an hour and a half and the agenda is very loose – coffee and cake and a chin wag. We go through the monthly DEEP newsletter and have some banter, but at the same time we also get a bit of work done.
It’s whatever the group wants to do really. I’m the contact point, I book the room, I put the kettle on, and people contact me if they want to come and visit the group from the memory service or a student, but that’s not my decision – it’s their group.
People often comment on what the group means to them:
“It’s a fantastic place to be.”
“It’s changed my life.”
“I’ve got a whole new bunch of friends.”
“I thought it was just me, I was alone with this, but now I feel I’ve got something to offer.”
“I was a bit wary coming but this has really opened my eyes to the fact that it’s nothing to be ashamed of, and I do still have something to offer in terms of research, for example.”
As for the future, I think the group will grow. I’ve got referrals coming in now and we’ve got a really good relationship with the memory service and community mental health teams. The commission that I’ve got with East Riding is to create a network across the county, so we’re going to do another Good Life course in Bridlington with new people. The aim is to expand the network, and plan more audits – like trips to leisure centres to check them out. If we do get a regional network across the county then we’ll have a gathering with all of them and we’ll come to a central location and have a big bash – and meet between us to run more courses.
And for the near future – as DEEP is celebrating its 10-year anniversary this year we have held a series of regional gatherings throughout 2022, which will culminate in a virtual DEEP festival the week commencing 5th December. To keep updated on events look out for tweets @innov_dementia and sign-up details on the deep website. The programme is packed full of examples of the power of peer support and how the DEEP values of belonging, welcome and inclusion have inspired and liberated people to do huge amounts… the message is people with dementia CAN!
Damian has spent 20 years working with people with dementia in acute, community and long term care settings. After a long association with Innovations in Dementia, he became a co-director in September 2016.
He is particularly interested in the promotion of relationship-centred approaches and is creator of the Getting Along approach and training programme.