In Holland in 1997, Dr Bére Miesen, a clinical psychologist specialising in old age, opened the first Alzheimer’s Café. Now similar cafés are opening across Europe and the Marlborough area café meets once a month in East Grafton.
Dr Miesen had noticed that talking about the various stages of memory loss and dementia was often taboo – even between sufferers and their carers. Introducing the cafés with their informal atmosphere, encouraged people to share their experiences and emotions.
The independent Alzheimer’s Support charity covers north Wiltshire and the Kennet area. It runs day clubs, a free counselling service, carers’ support groups, has a trained support worker for home visits and to relieve carers, organises weekly ‘singing for the brain’ sessions at Lockeridge (as well as at Bradford on Avon and Rowde) – and the monthly cafés.
The Marlborough area café for sufferers, family members and carers, ran for a year at the Castle and Ball in the High Street. But after a year it outgrew the space available there, and moved in March to East Grafton’s wonderfully refurbished Coronation Hall.
The cafés are funded by Wiltshire Council and run by Alzheimer’s Support as part of the county’s implementation of the national dementia strategy. It is supported by local NHS doctors.
June’s session was attended by about thirty people who heard a talk by Paul Batson, a drama therapist from the Avon and Wiltshire Mental Health Partnership’s Victoria Centre. He is a great believer in the value of life story boards and books.
These are a simple way to record – through photos, documents and text – the lives of people affected by memory loss. The boards are especially useful in helping practitioners and staff at homes realise they are dealing with a person rather than just a file card – with someone who’s had a unique life rather than just a medical condition.
As Paul put it, they help “Professionals see the person beyond the illness and knowing something about the person helps build a relationship with them.” They can prevent the feeling that everyone, from the clinician to the cleaner, is “Not looking at me – but is merely seeing a patient.”
Patients have had lives worth celebrating and need to maintain their dignity when old age brings serious problems.
He passed some examples of life books and boards round the café tables, and related telling anecdotes about the way they work. They can also jog sufferers’ memories about their own past lives and their extended families.
And did the café succeed in getting people to talk about their conditions? There was certainly a lot of good chatter going on in the Coronation Hall as sufferers and their partners and carers met up again and tucked into tea, sandwiches, cakes – and fruit.
There are about 700,000 people in the United Kingdom affected by some form of dementia and the figure is expected to double over the next thirty years.
Alzheimer’s Support is calling on Wiltshire GPs and consultants to do more for sufferers after research showed that NHS Wiltshire is one of the worst in the country for diagnosing the condition. A survey by the Alzheimer’s Society found just less than a third of dementia sufferers are told what is wrong with them – putting Wiltshire eight from bottom out of 169 primary care trusts.
Alzheimer’s Support has had its grant from Wiltshire Council for its core costs cut by ten per cent for this year. But Council funding of breaks for carers, and for specific projects such as the singing and café sessions, has been maintained.
However, the group is always looking for extra funds so they can reach more and more sufferers in the Marlborough area – and can also give respite to their carers.
In the meantime, they are looking for volunteers to help behind the scenes with the cafés – setting up tables, arranging transport and washing up. If you could help do contact the café organiser, Stephany Bardzil: StephanyB@alzheimerswiltshire.org.uk“>StephanyB@alzheimerswiltshire.org.uk