Alzheimer Cafe

Why was this example implemented?

Soon after the first Alzheimer Cafe opened its doors in 1997, people from the whole country started coming to there. The growth in the number of cafes showed a great need for an informal setting where people with dementia, their partners, family, friends, caregivers, could talk about the disease. This need was not yet met within regular care. Moreover, people with dementia or suspected of having dementia often need an indication for regular dementia care. This is not necessary for a visit to an Alzheimer Cafe. Therefore, the client as well as the informal caregivers receive information and support earlier in the dementia chain. By talking about the problems that dementia brings, people and families can better manage their own situations. Making the illness ‘discussable’ gives the person with dementia the feeling of being able to influence his situation. The person with dementia meets other people that experience the same difficulties. In addition, the partners, children, family and/or friends see that they are not the only ones with the feelings of powerlessness, dislocation and distress. With the coming of the Alzheimer Cafe, there is a place where they can go to together and find out how others deal with the illness and its consequences. The visitors feel they belong and find recognition and acceptance. Furthermore, the Alzheimer Cafe brings together various aspects that the usual ‘information evenings’ lack. Although the meetings are partly therapeutic and have a strong educational side, a part of the evening is specifically for making informal contacts. The easily accessible character is unique.

Description

With the Alzheimer cafes, the idea of Dr. Bère Miesen (Clinical Old Age psychologist at the specialist research centre for old age psychiatry, ‘Mariënhaven’), that had been evolving for a number of years, became a reality. After several months of preparation, together with the Alzheimer Association in northern ‘Zuid-Holland’, he succeeded in launching something, which is now being increasingly copied. In his contacts with people with dementia and their families, Miesen had noticed that talking about the illness, even between partners or within a family was often taboo.

Making dementia discussable, and providing information about it and its consequences, is very important for the acceptance of the illness, Miesen thought that it would be good if all those involved could meet each other in a ‘relaxed forum’ to exchange experiences and to talk about dementia. There would then be a place where people could share their experiences and sorrow. Miesen’s idea of an Alzheimer Cafe first became reality in a lecture room of Leiden University. About 20 people attended the first meeting. A month later there were 35, then 54, and after 3 months the lecture room contained 80 people. It was clear that the initiative met a real need. People from the whole country started coming. It appeared that there was a great need for a place where people with dementia and those involved with them, could talk calmly about the disease. People left the meetings feeling more resilient and also, importantly, with tips on how to deal with people with dementia.

The range of people that visit a Cafe is great. Besides people with dementia and relatives, friends, professional carers and students, other interested people such as policy makers, journalists and representatives of the regional and national media sometimes attend. About 35,000 unique visitors visit the Dutch Alzheimer Cafes every year. In the United Kingdom, Belgium, Greece and several other countries, the first Alzheimer Cafes have opened their doors as well. In one Alzheimer Cafe near the border, people from the Netherlands, Belgium and Germany meet each other.

What are/were the effects?

Alzheimer Cafes: effectiveness

• Growth as a sign of need
• Number of participants (± 7,000 visits / month)
• Majority of people ‘stamgasten’ (core guests)
• Anecdotal information (satisfaction is high)
• Informal caregivers feel like being able to deal with problems related to dementia
• Clients feel less alone and more accepted 

Alzheimer Cafes: indirect effects

• Gives a face to the illness
• Less taboo
• Empowering people with dementia and their partners, friends, family
• Balancing the emphasis on medical ‘treatment’
• Free publicity in local newspapers 
• Educate professionals and other visitors (politicians) 

In January 2011, 187 Alzheimer Cafes all over the country were active. Several aspects show that the concept of Alzheimer Cafes is sustainable and mainstreamed. The number of Cafes in the Netherlands is still growing and they are geographically spread over the entire country. Alzheimer Cafes have opened their doors in other countries as well.

What are the strengths and limitations?

Strengths

• Gives a face to the illness dementia
• Less taboo because it makes dementia discussable
• Empowering people with dementia and their partners, friends, family
• Balancing the emphasis on medical ‘treatment’
• Free publicity in local newspapers
• Educate professionals and other visitors (politicians)
• Meets a real need 

Weaknesses

• No scientific proof
• No meetings at national level, volunteers arrange the meetings on their own initiative (possibly help from the Dutch association of demented patients

Opportunities

• Information about where to find health care providers might stimulate people to seek help. The earlier they seek help, the better (to prevent crisis situations)
• Some Alzheimer cafes have agreements with taxi services, picking people up and bringing them home for a small contribution

Threats

• 187 Alzheimer cafes have opened their doors so far, but still not everyone has access to a cafe at a close distance from home
• The cafes are run by volunteers, so no financial compensation is available for them

Credits

External Links and References

• www.alzheimercafe.co.uk
• www.alzheimer-nederland.nl (only in Dutch)
• Morrissey M.V. (2006). 'Rethinking the benefits of an adapted version of 'Alzheimer Cafe' for individuals with Alzheimer's and their partners' in: Int J Psychiatr Nurs Res, Vol 12(1):1393-401. 
• Morrissey M.V. (2006). 'Alzheimer's cafe for people with and affected by dementia' in: Nurs Times, Vol 102(15):29-31.