Dementia Voice: The Irlam Group
Find out why Jim and Brian co-produced The Irlam Group after both being diagnosed with dementia.
‘Without your help we would have given up by now…It’s made us feel more confident, like we know what we are doing…it feels like it’s something proper and we are helping other people who have got dementia.’
Brothers Jim and Brian were both recently diagnosed with dementia and were disappointed in the lack of services for people living with dementia in their local community. So with the help of their wives, Kath and Margaret, they decided to set up their own support group.
Jim and Brian co-produced the group with Beth Luxmoore as part of the Salford Involvement Project. Together they developed and publicised the group.
Over the past six months the group has flourished, attracting over 30 individuals affected by dementia to the fun, sociable and supportive afternoons.
Why did you want to start your own peer support group?
Brian: 'I had a dementia diagnosis and I wanted everyone to know about it. I’m sure there are people out there who don’t want to say they’ve got it, but we want to be open about it.'
Jim: 'If you aren’t open about it, people don’t know how to talk to you about it.'
Dave: 'There was no place to go in Irlam [for dementia support]' – Dave was diagnosed with dementia around 12 months ago, he and his wife did not know any of the group members before they started coming last summer.
What has been the most challenging thing about setting up the group?
Kath: 'Getting people here was the hardest, the ones that need help, getting them to know about it. Until you [Alzheimer’s Society] got involved it was just us from around here really, now other people know about it and new people are coming.'
Margaret: 'It’s a shame that some people have been once or twice and not returned, but its been nice to meet new people who do come back regularly.'
What has been the highlight of running the group?
Brian: 'Helping people out, not just me but others.'
Margaret: 'Seeing everyone coming here and enjoying themselves.'
Jim: 'It’s been really good to chat to other people. It’s a great thing also to use this room [communal lounge of sheltered housing]. To see all the people who have come and had a chat, its done good. It’s brought a lot of people out and they look forward to it now.'
Dave: 'We’ve lost quite a few friends since I got this [dementia], people think its catching. Being able to talk to other people with dementia and meeting new people who are in a similar situation to us. It’s been nice to come to a new group, everybody talks to you, I’m made up with this place.'
What would you suggest to other people who want to set up their own dementia groups?
Margaret: 'We’ve been lucky to get this room without rent, that makes a big difference. You can look out for grants from housing associations and CVS. They also helped us to get constituted. Its been worthwhile.'
Kath: 'Word of mouth is very powerful'
Jim: 'If you ask people to pay a small charge [£1], it helps to keep things going, that goes towards the teas and coffees and cakes. We also encourage people to come with a friend to help them feel more relaxed.'