Living with dementia magazine June 2012

Being diagnosed with dementia is a daunting experience but it need not be a lonely one. Luke Bishop talks to a person with dementia who has found comfort in the support of his peers.

When Tom Coppins was diagnosed with vascular dementia four years ago, he was at a loss for what to do.

The hospital had given him basic information about his condition and signposted him towards the Alzheimer's Society website but he felt, at first, that he was on his own in his dementia journey.

Just over a year after his diagnosis, however, peer support services for people in the early stages of dementia were started near his home in the village of Wrotham in Kent. He started to attend a group in Maidstone and the experience, he says, has 'changed his life'.

Fundamental part of life

Tom, 60, says,

'When the hospital finished with us after diagnosis we got a post-diagnostic course at the hospital but after that you are discharged and that's it - you are left alone. It is a bit daunting as you have got no one to talk to or turn to. Unless you know someone else with dementia it is a bit lonely.

'The support I get from the friends I've made at the peer support group is great, it is really beneficial. It has become a fundamental part of my life.'

By attending the group Tom has gained valuable information, for example, about the benefits that he is entitled to and how to claim them, and about legal issues such as advocacy and power of attorney.

Firm friends

The greatest benefit of the peer support group has been making friends and sharing his experiences with people who are in the same position. Tom describes the twice-monthly meetings as being a social experience where people not only chat but also paint or play darts or cards, and the group often goes out for a pub lunch as well. People can be honest and say how they're feeling without fear or embarrassment.

'Dementia is a funny old illness, you get days when you get depressed for no reason at all - you just can't put a finger on why. At the group you can just talk about it and say you feel really depressed today and just talking to the other people brings you out of it.'

Tom says that this can even include light-hearted ribbing, but that it all 'has the right effect because it makes everybody feel happier. You walk out of there feeling great.'

He adds that some members of the group have become such firm friends that Tom will often talk to them on the phone outside of their fortnightly meetings.

Enormous impact

Peer support groups have been identified by people with dementia as a priority service. Over the coming years Alzheimer's Society is looking to develop more groups across the country.

Ellie Potier, Home Support Service Manager for West Kent, set up five peer support groups in Kent in 2009 and continues to manage the group that Tom attends. Developing peer support services is one of the key objectives of England's National Dementia Strategy and the groups in Kent were started as 'demonstrator sites' to measure the value of these services.

For Ellie the experiences of Tom and others clearly demonstrate the service's value in combating the isolation felt by people who have been recently diagnosed with dementia and allowing them to talk through their problems rather than bottling things up.

She says,

'I think the groups are absolutely brilliant and if you talk to people like Tom or any of the others you find that out because they say that going there has changed their lives.

'At first, I tended to think "how can it change your life?" but when you are first diagnosed you think you are the only person with the illness. At the peer support group you find there are other people in the same boat.

'The groups have had an enormous impact. There was a lady at the West Malling group who had only just been diagnosed and was very tearful at first. She has really come out of herself and coming to the group has helped her.'

If you want to find out about peer support groups in your area you can visit alzheimers.org.uk/localinformation or call 020 7423 3500.

You can also use Alzheimer's Society's online forum Talking Point if you wish to share information, advice and personal experiences with other people affected by dementia - see alzheimers.org.uk/talkingpoint

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