The concept of the dementia or Alzheimer’s café arose in Holland when Bère Meisen, a Dutch psychiatrist, became aware of the need for people with dementia and those who cared for them to have access to an environment where they could socialise with others in a relaxed atmosphere, and also seek help and advice.
Meisen had noticed that talking about dementia, among families and even between partners, was often something people found very difficult to do. Sometimes it is a “taboo” subject which is never mentioned, even though it is a daily reality. Meisen recognised that both those with dementia and those caring for them often experience a grieving process as they try to come to terms with the diagnosis and the problems and difficulties of day to day life. He felt that a “relaxed forum” was needed, where people could talk with others going through the same experiences. They could also seek help and advice from professionals about the disease, how to cope with it, and how to access services.
Meisen launched the first café in a lecture room at Leiden University in 1997. Soon, up to 150 people were attending the monthly meetings. Psychotherapists, nurses and social workers joined people with dementia and their carers to enjoy refreshments, music and discussions on the disease. The movement spread rapidly, and before long news of it reached the UK. In 2000 the first Alzheimer’s Café in Great Britain was opened in Farnborough, Hampshire.
The idea is simple – facilities are provided for people with dementia and their carers to attend a monthly gathering. The atmosphere is relaxed and friendly, and everyone is “in the same boat”. Carers profit from a two hour break from the isolation of caring at home and together with other carers and people with dementia can socialise, make new friends, enjoy activities or talk about their own experience of dementia in an understanding, non-threatening environment.
In 2009 the National Dementia Strategy called for a network of dementia cafés to be set up across the country, acting as a focal point for practical and emotional support. This gave even more impetus to the movement, and now access to a dementia or Alzheimer’s café is widespread. The use of the word café emphasises the friendly and relaxed atmosphere which is needed to encourage people to attend and to enable them to get the most out of the experience.
In a safe environment people can talk with others (referred to by Meisen as “companions in distress”) about how they deal with the illness and its consequences. They will find themselves understood and accepted, feel they belong and their problems are recognised. Information may be given about various medical and psycho-social aspects of dementia, and professionals may be able to solve problems or provide access to local services on the spot. People will be encouraged to speak openly about the difficulties they are experiencing, and someone else may be able to offer a solution. Most importantly, dementia cafés can play a large part in reducing the isolation which is often felt by both people with dementia and their carers.
How to find a Dementia or Alzheimer’s Café
Guideposts Trust provides specialist information and care services for people with dementia and their carers, and will be able to advise you about the availability of dementia cafés in your area. www.dementiaweb.org.uk
Contact the Helpline number: 0845 4379901 available Monday to Friday office hours, answer service at other times or by email at info@dementiaweb.org.uk
The Alzheimer’s Society is a care and research charity for people with Alzheimer’s disease (and other forms of dementia) and their families. As well as a national helpline, there are over 250 local branches, and they should have the information you need. Look them up in your telephone directory or use the following national contact details:
Helpline: 020 7423 3500
Email: enquiries@alzheimers.org.uk
Website: http://alzheimers.org.uk
Carers UK provides advice and information to carers and the professionals who support carers.
Carers UK Adviceline: 0808 808 7777 (Wednesday and Thursday 10am to 12pm and 2pm to 4pm)
Email: adviceline@carersuk.org
Website: www.carersuk.org
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