VOL: 102, ISSUE: 15, PAGE NO: 29
Matthew V. Morrissey, MSc, MBATh, PGCE, BSc, RN, DipHigherEd, is senior lecturer (mental health) Canterbury Christ Church University, CanterburyCaring for older people can be seen as a burden and a drain on resources. Many believe that older people's care has never been truly valued by medicine, as illustrated by attitudes toward geriatric medicine that consider it to be 'a second-rate specialty, looking after third-rate patients, in fourth-rate facilities' (BMA,1986). Dementia care, at the end of this spectrum, is often viewed even more negatively. However, there are some interventions like the Alzheimer's cafe that can contribute significantly to supporting people with dementia, their carers, partners and relatives.
Caring for older people can be seen as a burden and a drain on resources. Many believe that older people's care has never been truly valued by medicine, as illustrated by attitudes toward geriatric medicine that consider it to be 'a second-rate specialty, looking after third-rate patients, in fourth-rate facilities' (BMA,1986). Dementia care, at the end of this spectrum, is often viewed even more negatively. However, there are some interventions like the Alzheimer's cafe that can contribute significantly to supporting people with dementia, their carers, partners and relatives.
Worldwide there are millions with and affected by Alzheimer's disease and many of them also have depression (Reskind, 2003). Alzheimer's is an incurable disease where changes in brain nerve cells result in brain degeneration and brain death. The destruction of these cells gives rise to serious mental deterioration, mental health problems, behavioural problems, dementia and death.
The person with dementia, their partner and their family need to be well supported. The recognition and admission of mental suffering can make life liveable again (Miesen, 2000) and allow people to focus on getting on with living (Sheard, 2004).
Discussing emotional trauma is a central part of care and can help individuals value and make sense of their lives with dementia (Bender et al, 2005; Morrissey and Coakley, 1999). By understanding, working with and supporting people the other side of dementia care, which is often about relationships, can be seen (Sheard, 2004).
To engage people who have dementia fully in learning how to live with and cope with the physical, psychological, emotional, social, practical, financial and spiritual issues of the disease, interventions need to start in its early stages.
There is a lot to be learnt about dementia not just as a medical condition but also as a lived experience. Unfortunately, much of the literature continues to focus on medical rather than psychosocial interventions (Jones and Miesen, 1993).
In contrast there is growing concern from carers and professionals that dementia care needs to be redefined to provide appropriate care, education and support. An Alzheimer's cafe is an informal approach that has been gaining interest and momentum (Redwood, 2001).
The Alzheimer's cafe is mainly based on the work of Dr Bere Miesen, a clinical old age psychologist at the specialist research centre for old age psychiatry in Marienhaven, the Netherlands. The first Alzheimer's cafe opened its doors on 15 September 1997.
In his contact with people with dementia and their families, Miesen had noticed that talking about the illness, even between partners, was often taboo. He was not alone in this observation.
Mapes (2004) also noted that making dementia a subject that can be openly discussed and providing information about the condition and its consequences plays a very important part in developing acceptance of the illness. Miesen thought it would be a good idea if all those involved could meet each other in a 'relaxed forum to exchange experiences and to talk about dementia'. This is the basic theory behind Alzheimer's cafes and more than 60 now exist in the Netherlands. The first Alzheimer's cafe in the UK in Farnborough, Hampshire, has been running for several years.
The Alzheimer's cafe concept is about acknowledging the condition and providing space to express emotions and discuss practical difficulties involved in living with this chronic and long-term illness (Box 1, p30) (Jones and Miesen, 2004).
Persons with dementia are the focal point of the cafe talks and they are included in discussions in the presence of family members, friends and others. Groups have been started for couples using an adapted version of the cafe (Sheard, 2004).
It is of prime importance that visitors talk to each other informally and without interruption, exchanging experiences or informally consulting carers or specialists. It is suggested that the relaxed atmosphere of a cafe set-up breaks down taboos and gives people the important feelings of belonging, acceptance, acknowledgement and recognition (Jones and Miesen, 2004). Meetings are generally planned on a fixed day.
Evaluating the cafe
This is a personal reflective account of an Alzheimer's cafe experience based on the Gibbs reflective cycle (Fig 1) (Gibbs, 1988).
Originally eight couples took part in an eight-month programme for newly diagnosed individuals and their partners. There were eight sessions once a month devised primarily by a clinical psychologist, an Admiral nurse, a nurse and a doctor.
From the start it was clear that people needed to talk and the experienced and skilled staff were receptive and open to engaging with the issues that were raised.
An Alzheimer's cafe should be about providing a safe space where people are comfortable to talk. For staff, their focus is on using listening, relationship, facilitator and people skills.
Feelings and evaluation
Walking into the room I initially found it remarkable that half the people had early stage dementia. I did not know who the person with dementia was and who the partner was.
Like everyone else, I was intrigued and wanted to get to know each person. I felt a mixture of emotions, sad for the individuals initially but the group educated me about integrity, the need to share, kindness, having fun and maintaining courage in the face of adversity. Often the individuals with dementia were the ones who were reaching out to help me understand.
I was delighted and found it incredible how these people kept such a wonderful sense of humour. It was a joy to be sharing a space with them and I knew there was much that could be learnt from this experience.
For staff, it was clear that there was a significant learning curve in setting up and running their first cafe. Staff held meetings to decide the structure and theme of each session, for example nutrition.
The first session brought the couples together and each couple was given information about dementia, which included useful addresses and phone numbers. I observed in the first session how the atmosphere in the room was carefully constructed to maximise participation and support.
The facilitator and other staff made sure to take time to welcome each person. People were rather nervous to start with but after some time and a coffee break people began communicating with much more ease.
The experience appeared strange for some group members as it was not clear which partner in each couple had been diagnosed with dementia. However, many felt good that there were no labels such as 'client' or 'partner'.
Some members found it hard even to say the word dementia, preferring to use the term memory problem. One individual found it difficult to remember that his wife had memory problems.
More than half identified early on that the primary benefit of the cafe was to have somewhere to come to talk and share experiences.
My feelings were primarily of pride in relation to the immense courage I saw in both the people diagnosed with dementia and their partners. There seemed to be a merging of involvement between staff and people with dementia and their partners. People worked synergistically over many difficult and sensitive issues.
As the monthly sessions progressed, more and more people were able to share their feelings and questions. There was, however, also a feeling that what was expressed was only the tip of the iceberg. It was evident that many individuals had never had the experience of talking to other people who had similar problems and valued this experience.
Protecting the dignity of the person seemed to be an issue close to the hearts of partners and some expressed their concern for the future.
One member said that she was frightened of attending in case there were people worse than her husband. She was worried about the effect of this on him and also thought that it would be difficult to see in others what could happen to him further down the line.
Regular involvement in an Alzheimer's cafe provided an opportunity for support and education. Being able to share experiences meant that people could discuss the benefits of the group and new things they had learnt.
Towards the last session it was clear that people felt comfortable in expressing their views and airing difficulties. The other main themes that evolved during cafe discussions included:
- Not feeling alone;
- Learning the value of partnership;
- Airing sensitive and practical concerns;
- Exploring ways of dealing with embarrassing situations;
- Identifying living skills;
- Gaining insights and support from others;
- Dealing with change;
- Maintaining self-esteem;
- Learning to live in the present.
These themes are similar to those from other approaches to couple therapy (Sheard, 2004).
The most valued topics included communication and issues around living with dementia. The overall benefit of the cafe was identified as being the positive effect of bringing people together, which can often be underestimated.
People are social beings so need to have social support from other people in the same position. This also provides a very meaningful way for staff to support and educate people who may otherwise remain isolated.
Other methods such as new person-centred approaches and couple therapy have given similar results when people engage in a group setting whether using couple therapy, or person-centred or relationship-based approaches (Bender, 2005; Nolan et al, 2003; Kitwood, 1997).
It seems that an adapted version of an Alzheimer's cafe can provide educational input in a smaller group, focusing on communication with clients and partners. Couple therapy, although it has a different emphasis, seems to give similar findings (Sheard, 2004).
It seems the cafe plays a significant role in the provision of educational, mental health and emotional support for all those who are affected by dementia without negating other approaches. The cafe setting is particularly useful as it can reach more people.
There is a need to undertake research in order to shed light not just on the different approaches that can be used but on which approach benefits which client group. Much of the adapted/local work has focused on the early stages of dementia but there is also a need to provide interventions along its trajectory.
Dementia care ought to be about continually meeting and addressing the needs of people at all stages of dementia.
Clearly there is positive psychological, emotional and social support provided by an Alzheimer's cafe. Despite this being only a reflective account, it illustrates the benefits of the cafe, not only in offering support but also in providing education and much-needed social space. This is most important as many people with dementia may be lacking such support.
Based on this experience of an Alzheimer's cafe, it is hoped in future to undertake a more comprehensive piece of research to incorporate the direct experience and benefits for individuals and their partners. The action plan would include a detailed understanding of the best way to recruit participants and formalise research tools in advance.
It is clear that individual interview would be a good method of gathering data and comparing the views of people with dementia with those of their partners regarding the benefits of a cafe.
The use of a reflective diary could be a useful way of gathering personal data and could provide a good method of assessing the process.
It may be useful to put data into themes to study the process of being part of a group like this. Some work will be required in formalising links to places where the research can be undertaken.
- This article has been double-blind peer-reviewed.
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