On May 14th, 2010, a month ahead of the famous races, the first national Alzheimer Café UK (AC) conference was held in Ascot. The theme was ‘meeting the pioneers and each together’. Attendees included those already holding the 28 ACs, and those interested in setting up news ones. Representatives from the Netherlands and Canada were also present.
To those not familiar with an AC – it is a form of group support (once-a-month gatherings), for people with dementia and their family carers and friends, in a relaxed café-like environment. It is more than an opportunity to socialize with refreshments, and includes psychological education - in the form of themed interviews and discussions - about having and caring for a person with dementia. Access to other types of information and answers to urgent questions are made possible by the presence of professionals, representatives from the local Alzheimer’s support groups, volunteers and ‘core family members’, all of whom are knowledgeable about dementia.
The first AC was set up in Leiden, the Netherlands, in 1997, by the pioneer Dr. Bère Miesen the dementia specialist and clinical psychologist. By 2000, the first AC in the UK opened in Farnborough: co-founded and coordinated by Kandy Redwood, with three years of seed funding from Hampshire County Council and the [then] Rushmoor Primary Care Group. Since 2008, the Alzheimer Café UK has become a registered charity. Other ACs quickly followed, and their spread throughout the UK continues. Confusingly, some variations in types of cafes have arisen however, with some focus on the opportunities for social contact in a Café-like setting without the themed interviews or discussions. (For example, a Memory Café or Dementia Café is not the same thing as an Alzheimer Café).
The conference with the announcement of a new book ‘The Alzheimer Café: why it works’, by Dr. Gemma Jones. It is dedicated to Dr. Miesen, and was to be presented to him, but since he was in hospital, his colleague, Dr. Marco Blom - director of the Dutch Alzheimer’s Society [Alzheimer Nederland] accepted it on his behalf.
The day was chaired by Dr. David Wilkinson, founder of the Memory and Assessment Research Centre in Southampton, a longstanding associate of Dr. Miesen, who read out his opening talk. It recounted Bère’s determination to try to find a way to reduce the isolation of people with dementia and their carers, to give voice to the emotional aspects of what happens to them, and to help reduce the stigma associated with it. “At the AC dementia is given a status…. Acknowledging (coming out) that ‘I’ve got Alzheimer’s’ or ‘I’ve got something to do with dementia’ is often the first step on the road to regaining some control, and taking charge of your own life again. By ‘coming out of the closet’ about dementia, you stop yourself from becoming stuck in the role of victim. A good quality Alzheimer Café is a sort of safe haven, guaranteeing the security and assurance needed to enable people with dementia and their families to, as it were, explore the disease and its consequences -both now and in the future, giving them the ability to look their enemy in the eye as quickly as possible. Then they can stop trying to walk away or deny it.”
Marco Blom, is known for being ‘the grower’ of the ACs, and his presentation described the support and structure used to do this. There are almost 200 Dutch ACs now. Key to this growth has been recognition of the value of this form of support, that it is economical to provide, and the determination of particular communities throughout the country to offer this type of support for local residents. Gemma Jones spoke about the start and growth of the Alzheimer Café in the UK.
The day ended with discussions and networking over cheese and wine. Participants were in favour of standardizing the development of ACs in the UK, in the form of self-evaluating to the established quality control criteria, and setting up two-day courses for AC interviewers and coordinators, as is done in the Netherlands. (See web-site www.alzheimercafe.co.uk, which is being updated with the locations of ACs in the UK contact details. Copies of the new AC book can be obtained via www.thewidespectrum.co.uk.)
Link to Dr Bère Miesen's opening talk
Link to Dr Marco Blom's presentation
Link to photo gallery from the conference
The AC UK conference was supported by a medical educational grant from Novartis Pharmaceuticals, UK.