Read the TAD Newsletter on the recent AC Networking day
Welcome to the Alzheimer Cafe UK Website
The Alzheimer Café UK is a small independent charity (no. 1122726), which was established in 2008 to support the original Alzheimer Café in the UK, and to help other Alzheimer Cafes to set up according to the original model. The first Alzheimer Café (AC) was started by Dr. Bere Miesen in the Netherlands in 1997.
This website provides information about what an Alzheimer Café is (AC), who they’re for, what happens at them, how ACs started, the first AC in the UK, current ACs in the UK, related information and references and how to start one.
What is an Alzheimer Cafe? ... And why use that name?
An AC is more than just a ‘social outing’, which the name, taken literally, can suggest.
An Alzheimer Café (AC) is a gathering of people affected by and/or interested in dementia. Monthly gatherings are for the purpose of education, discussions, exchanging information about dementia, and for opportunities to socialize and meet others. Attending an AC is free of charge. People and come and go as they please, just like at a café.
A more formal definition:
An Alzheimer Café is a type of post-diagnostic group intervention, held monthly, that provides education, information about dementing illnesses, as well as various types of support for people with dementia and their carers, and interested others . ACs take the form of ‘a social gathering’ in a café-like setting where people meet easily. ACs help support people with dementia and their family or friend carers to stay connected. AC’s are organised and held by a steering committee who are knowledgeable about dementia, and organise the provision of the AC with local volunteers and caregiving professionals.
Back in 1997, the name ‘Alzheimer Café’ was chosen , as opposed to ‘dementia café’ and used for the same reason that in most countries, the national support organizations were and still are called ‘Alzheimer’s societies’ (and in small print) and related types of dementia and neurological disorders. This is because Alzheimer’s disease is the most frequently occurring and most known type of dementing illness.
Who is it for?
ACs gatherings are open to:
. people with dementia, any type of dementia; for as long as a person is comfortable in the Café environment and with the talks and discussions
. family carers, friends, neighbours, social network
. anyone interested in dementia, professionally or personally. These include:
caregiving professionals, students who want to learn about dementia, students who want to help as volunteers to fill the public service components of awards like the Duke of Edinburgh Award.
What happens at an Alzheimer Café (AC) ?
Guests receive support, information, education about dementia, and meet others in similar circumstances. They also meet professionals knowledgeable about dementia, representatives of the local Alzheimer’s Society or other dementia support group, services, and volunteers. People can converse, listen to one of the themed talks or interviews, and enjoy refreshments and music. It was intended that people start attending ACs from the time of diagnosis - for as long as they wish or are able to.
The AC has been described by a family carer, like ‘a boat, anchored in a safe harbour during a storm.’ This fits in well with the logo and slogan of the AC UK, ‘all in the same boat ’. The overall AC atmosphere is one of safety - in the presence of shipmates who understand about dementia, so that no one need be embarrassed. For some guests, attending an AC is their only monthly outing, and the only time they have seen a health or social care professional outside of an assessment or crisis situation. Here, they can ask professionals questions, informally over refreshments.
The logo and image for the AC UK
What is the structure of an AC gathering?
An AC usually lasts about two hours and can include the following:
. half hour of socialising
. half an hour for a presentation, discussion, interview or video clip which addresses a theme or topic related to understanding dementia (see below)
. half an hour of socialising
. questions about the presentation - in public
. socialising and closing (time for questions of the presenter in private)
At some ACs, the question time is merged with the presentation-time.
History of ACs
The first AC was started in 1997 in the Netherlands by Dr. Bere Miesen. He was frustrated that health and social care students were not taught more about the invisible (emotional) aspects of having and living with dementia (e.g. fear, anger, helplessness, stress, long-term grieving, guilt, adapting coping and communication, and difficulties admitting to the need for and asking for help). That meant that people received some types of help, but were missing out on support for some essential issues. He decided to try to change this and invited people he knew, and anyone else interested, to attend the first “Alzheimer Café” at the University of Leiden.
The first AC in the UK started in 2000 in Farnborough. There are now 200 Dutch ACs, about 27 in England, 6 in Ireland, and more in planning stages. ACs have started in over a dozen countries.
The aim of the AC?
It is a practical effort to help reduce stigma about having or talking about dementia, so that people don’t miss opportunities for support and inclusion. The AC does this by giving recognition, status and attention to people with dementia, their carers, and the illness. Also, by providing psychological education, information about local services, practical support, and opportunities for questions, sharing experiences and social interactions.
How do the interviews and interactive talks at ACs help?
ACs are structured around an annual programme of themed topics. These themes, (which broadly follow the course of a dementing illness, and name issues relating to the emotional aspects of having dementia and caring for a person with dementia) are the psychological education component of an AC. A topic is presented as an interview or interactive talk, or video.
The themed content of each AC gathering, has been designed to sensitively, openly and honestly address some aspect of the emotional struggles that people with dementia and the family/friend carers face.
“If you attend AC sessions you acknowledge that you have something to do with the disease…that’s a significant step for nearly everyone and is crucial to being able to live and cope with it… a good quality AC has to be a safe haven….allowing people to look their enemy in the eye as quickly as possible…enabling people and their families to explore the disease and its consequences, so they stop trying to walk away or deny it….I personally find it a sort of ritual for getting rid of your fear. We all know that tragedy is not deep and sharp if it can be shared with friends.” (Miesen, 2010)
During the discussions, it is publically acknowledged that: dementia represents a major catastrophe in the lives of all involved; that it is unasked for and could happen to anyone; that there are various types of pain associated with it (powerlessness, dislocation and distress); and that, receiving support, meeting others ‘in the same boat’, and participating in life as much as possible, is preferable to hiding away.
There are many reasons why people choose to come to an AC
The AC offers people both an increased sense of control (through education, local information and easy access to professionals), and a feeling of safety (friendly, caring contacts and a good atmosphere). Feelings of safety can be facilitated by: good role-modeling, a pleasant social environment, familiarity, appropriate humour, constancy and predictability (e.g. through the timing-structure and routines at ACs).
AC guests are like people attending a normal café. The reasons people attend may change over time. They may come, for example:
• for social contact with others, or the refreshments
• for distraction from the home situation
• for information on a particular theme or topic, or to hear a particular speaker
• to ask questions about or find support for a particular issue
• because they feel comfortable with a particular person at an AC
• because it was in their agenda, and they need to keep to a routine to have a little sense of control
The themes discussed at ACs
The themes for the talks and interviews broadly follow the course of a dementia and are repeated each year. Most AC include the following topics:
. What is dementia; how is it diagnosed?
. What happens to memory and other abilities?
. The range of human emotions; what invitation do they bring?
. Understanding fear and anger – the ‘lion’ emotions
. What help is available?
. Understanding grieving and guilt
. Learning to live with dementia
The following topics have also been used at some ACs:
. daily ethical dilemmas: e.g. to lie or not to lie; to help or let a person struggle a bit to do thing or to help them quickly
. behaviour changes and the variety of reasons for it (including fear, pain, disorientation, disinhibition, sensory-perceptual difficulties, the spread of brain damage to particular areas)
. explaining visuoperceptual changes in dementia (and making environmental adaptations to make people feel safer, increase orientation, sense of control, and to be able to locate important things more easily)
. how difficult is it to give up driving, and/or one’s work?
. breaking through denial: what can help?
. how can receiving a diagnosis of dementia help you to ‘move on’?
. how do you explain to others (neighbours, shopkeepers) that you have dementia?
For some people the content of a theme may, for example, help them better accept their role as a carer, or to work through to the next stage of their grieving process. So, although they are not overtly ‘happy’, they are making progress in a positive direction. Some guests feel better when they’ve spoken to a professional, volunteer, or another carer - after the talk, or found useful literature, or suggestions about how to locate additional assistance. What was helpful to them was not only the guidance, but also the interest shown in them at the following AC.
Some guests have related that just one particular word, image, sentence, or model, in a talk or presentation, made them reflect on something important or new. That is what made it worthwhile for them. Most memorably, occasional AC guests have admitted, “I didn’t want to know about that topic, but it is just what I needed to hear, so thank you for making me think about it.” Some guests have said that the went away feeling pensive, but that after doing some more thinking about things, they did decide that they needed more help and started enquiring how to go about getting it.
Other Café Models
Alzheimer Cafes have started in over a dozen countries. Since the start of ACs in the UK, other types of cafés (models) have developed and come into use. For example, some provide general interest talks but not specifically about dementia; some are primarily for socializing, and some provide brief intervals of activity for people with dementia (like mini-day-care services). They have their own names and goals.
The Patron Saint of Alzheimers
In 2012, I met Derek Cacutt at the Newport Alzheimer Café on the Isle of Wight. He was diagnosed with dementia this past year and started attending the café with his wife soon after. His poetry was so much appreciated there, that he started writing a poem each month to be read at the Café to the enthusiastic audience. The poems below are some of his creations from this year, and are included here with Derek’s permission*. The first poem, The Patron Saint of Alzheimer’s, is the one that was read out the evening I attended the café. It’s my favourite because it shows he values attending the café and what happens there. His other poems reflect his humour, values, and connection to personal, local, and national events, i.e. his personality (For other poetry by Derek see TAD Newsletter No. 53; 27 Dec., 2012).
click HERE to see Derek's poem
But in the words of the people that matter
" I can't remember seeing my wife as happy as this in a very, very long time, thank you."
"This is how it's meant to work, everyone, the families and all the professionals, talking together at the same time to solve problems"
Service Manager, Social Services, Aldershot
The AC UK Charity
Registered Charity No. 1122726
Dr. Gemma MM Jones
Advisory Committee Members
Prof. Viv Bennett
Dr. William van der Eerden
Prof. Andrew Knights
Dr. Michelle Legg
Dr. Marion Lynch
Dr. Bère Miesen
The philosophy behind the Alzheimer Café
“ Come out of the woodwork, you are part of society and we want you to take your part in it. Dementia is a part of life for some, for which nothing yet can be done. You didn’t ask to “get it”; it could happen to anybody. Don’t hide away”.
Annual AC programme
. Most ACs meet 11 months of the year taking 1 month as an annual break, usually in August
. Most AC have ‘purely social’ gatherings twice-yearly (usually in December for seasonal festivities, and in July for a summer event)
Representatives of the Rushmoor Male Voice Choir, the ‘Odd Fellows’, presenting the Alzheimer Café with a cheque for £1,180
(photo reproduced with kind permission of the Surrey Advertiser )
click below to see
TAD Newsletter about different AC models
Donations are very much needed and appreciated:
To make a donation to the charity, please make-out a cheque to:
'The Alzheimer Café UK',
and send to:
Maggie Bennett, The Lodge, Main Road, Havenstreet, Ryde, PO33 4DR
for electronic (BACS) transfer, email firstname.lastname@example.org for the AC bank details