Living with Dementia February 2009

What better place to get together for a laugh, a cry and a hearty lunch than the local pub?

A pub in central Bristol has become the setting for a recently established group of carers who no longer qualify for Alzheimer's Society carer support groups because their partners have died.

The Graduates Group was set up by the Society's Bristol and South Gloucestershire branch just over a year ago to help carers whose circumstances had changed.

Ros Macbeth, Support Worker at the branch (recently retired), came up with the idea after finding that many carers whose partners had died or moved into care homes were still attending Carer Support Groups and Social Drop-Ins as they valued the social life the groups provided.

The problem was that these places were needed for new carers who were contacting the Society. Ros said,

'We have very limited resources and these are needed for our services which help carers who are actively caring for someone with dementia. But there was concern that those carers who have gained support and social contact through these groups would be left without support at a difficult time.'

The idea was to set up a Graduates Group whose members could organise themselves with the initial help of one or two volunteers. Ros says,

'The name just came into my head very early on and stuck really. A lot of people don't like the term ex-carer or former carer, and I think graduate carer works well for people who have graduated from the university of caring for someone with dementia!'

As the branch could not provide funds to support the group, people would have to arrange their own transport, decide what they wanted to do and where to meet. The key was to ensure people were keeping in touch with each other and providing mutual support.

Janet Beg, a volunteer at the branch who helped to establish the group, said,

'It took a while to get things off the ground. Some former carers who'd been to our support groups didn't wish to come when we contacted them as they felt awkward coming without their partner. Attending social drop-ins was something they'd done with their partner and coming on their own was difficult.

'There were also problems with transport. A lot of people live in semi rural localities and most of them don't drive so it was hard to find a venue to get to easily. Taxis were too pricey and the buses weren't frequent enough.

'It's also taken a lot of courage for one or two of our members to come as their confidence had become very low. So we tried to get people to link up with each other and travel in together.'

Phyllis Telling attends the Graduates Group every month. She lost her husband John, who had Alzheimer's disease, three years ago. Phyllis says,

'I lost a lot of my friends when I started looking after John and I haven't got any friends now. My two sisters and my sister-in-law all died in subsequent years and these are people who I used to go on holidays and day trips with. No-one calls in for a cup of coffee anymore; I can go all week and not see a soul.

'The Graduates Group gives me something to look forward to. It helps to have people to talk over things with who are in the same circumstances. There is one lady who doesn't go out at all apart from going to the group.

'If it wasn't for me getting back to driving again I'd just be a hermit. Sometimes I get a bit low and I think, 'Blow this!' and I go and take a shower and get out. You can't just sit at home. Company is a big help and everybody says the same.'

Ray Kirkman is another 'graduate' carer who attends the group each month. Ray, who lost his wife Hilda, who had vascular dementia, says,

 'It's a day out for many people and gives us all a chance to discuss and reflect upon the past. We help each other and enjoy each other's company.'

Since the group decided to meet in central Bristol, which is accessible for most people on the bus, it has proved a success and now 12 people attend regularly. Each month, they choose the date they will next get together and where they will meet.

Ros says,

'When people come to us we tend to be quite parental and this can generate too much dependence. As people enter different stages of dementia it's the same. But we really want to be moving people towards independence so we thought it would be better if people started organising themselves.'

Such is the group's popularity that Janet Beg is now compiling a reserve list and hoping a second Graduates Group will take off this year.

Anyone interested in joining the group, or finding out more about starting one, can contact the Bristol and South Gloucestershire branch on 0117 961 0693.

Talking Point

Talking Point is an online community for people with dementia and their carers, family and friends to discuss all aspects of the condition. Take a look at www.alzheimers.org.uk/talkingpoint