Living with Dementia July 2008

By Caroline Graty

A growing number of cafés for people with dementia and carers are providing advice and support over a cuppa.

It's Friday morning at the Salvation Army centre in Hackney, East London. People are sitting at tables with colourful patterned cloths. Teas and coffees are being served and there is a lively buzz of conversation and laughter. Piano music plays softly in the background.

It looks like an ordinary scene, but this is a café with a difference. It is one of more than 60 cafés around the country that provide support and information for people affected by dementia.

Run by the Society's Hackney branch with support from the Salvation Army, the Friday Coffee Club brings together people with dementia, their families and carers, and health and care professionals.

The branch opened the Friday Coffee Club in early 2007 after members asked for more regular social events. Julian Lloyd, Branch Development Manager, says,

Many people withdraw from social activities because of dementia. At the café everyone is aware of the illness so people don't have to worry or feel embarrassed.

History
It is for this reason that Dr Bère Miesen pioneered the idea for an Alzheimer Café* for people with dementia and their carers in the Netherlands in 1997. Dr Miesen, a Clinical Psychologist, wanted to create a welcoming, relaxed setting where people could share their fears and concerns about dementia and receive help and support.

The Alzheimer Café concept came to the UK in 2000 when a café based on the same model was set up in Farnborough, Hampshire. There are now 20 Alzheimer Cafés around the country.

Unlike the more informal dementia cafes such as the one in Hackney, the Alzheimer Café model has a specific structure, based on an annual programme of themed topics which provide a psychological education in the form of talks and discussions. The topics cover the journey through dementia, focusing on the emotional aspects of living with the illness. Invited speakers lead discussions in an accessible and supportive atmosphere. The cafés are attended by people with dementia, their family members and friends, volunteers and health and care professionals.

Development
Further groups have since been established that use a café setting. They differ from the Alzheimer Café model, focusing more on informal support and information-giving rather than using a structure of themed discussions. They are known as dementia cafés, and have their own identity, with names such as the Memory Lane Café, Forget Me Not Café, or, in the case of Hackney branch, the Friday Coffee Club. The growth of both types of cafe shows that they are meeting a range of needs.

Friday Coffee Club
At the monthly sessions in Hackney people have time to mingle and meet others, and to take part in an activity such as a quiz. There is often a guest speaker or musician. People who attend the café find it offers more than just socialising. Georgina Etheridge finds comfort in talking to people who understand her situation. Her husband, Terrence, is in the late stages of dementia with Lewy bodies and is in full-time care.

Georgina says,

You meet people who are in the same position here. I feel that bit better when I go afterwards to visit Terrence.

Doreen Conway attends with her husband Maurice, who has Alzheimer's. Doreen says,

It offers comfort and support and I've had useful advice from the people who come here.

The café is also a source of information and advice. Leaflets and publications are available, or people can talk to health and care professionals. A social worker, community psychiatric nurse and consultant psychiatrist regularly attend the café. The relaxed setting is a good way for people to access services, especially those who might be put off by more formal processes.

Two-way street
As well as giving information and advice, health and care professionals can learn from the people with dementia and their carers at the café. Victoria Chibueze, a student mental health nurse, says,

I have been talking to people to get some insight; to find out how they feel about dementia and how they cope.

The café has grown rapidly since it began over a year ago. Nine people came to the first café; now up to 60 people attend each month. Julian says,

It's the only thing that the whole family can come to. Unlike carers groups or many day centre activities, people with dementia and their carers can come to the café together.

*For information about Alzheimer Cafes and any enquiries, please visit www.alzheimercafe.co.uk, email
kandy.redwood@hants.gov.uk or write to:

The Alzheimer Cafe UK Charity
Unit 22, Kingswick House,
Sunninghill,
Berks
SL5 7BH