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April 2012: setting up the EWGPWD

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Jean Georges, Executive Director of Alzheimer Europe, speaks about the meeting that aimed for a “European Working Group of People with Dementia”

The meeting took place in Glasgow from 15 to 17 April and was organised together with the Scottish Dementia Working Group and Alzheimer Scotland. It was aimed at exchanging best practices between countries on how best to involve people with dementia and providing guidance to Alzheimer Europe for the setting up of its European Working Group of People with Dementia.

The inspirational meeting was attended by nine people with dementia from the Czech Republic, England, Germany, Ireland, the Netherlands and Scotland who shared both their personal experiences of being diagnosed with Alzheimer’s disease or another form of dementia, as well as their involvement in the work of national Alzheimer associations. In addition, 20 representatives from Austria, Bulgaria, Norway, Slovenia and Spain participated in the meeting to learn from the organisations that already involve people with dementia.

Setting the scene

Henry Simmons, Chief Executive of Alzheimer Scotland, was proud to welcome the participants to his home city. He stressed that the significant achievements of the organisation - securing the government’s recognition of dementia as a national priority and the development of the Scottish Dementia Strategy - would have been impossible without the active contribution of people with dementia through the Scottish Dementia Working Group.

In my own introduction, I highlighted that the involvement of people with dementia was not a new priority for Alzheimer Europe. In fact, AE can look back on exactly ten years of activity in this field: during our 2002 Conference in Maastricht, Peter Ashley (a person with Lewy Body Dementia) made an impassioned call for the need of Alzheimer associations to give a voice to people with dementia. Since then, AE has provided a platform to people with dementia at successive conferences. They have been involved and consulted in working groups for projects and in policy work, on such important issues as advance directives, assistive technologies and the ethics of dementia research. AE now seeks to improve this involvement policy by setting up a European Working Group of People with Dementia. This will be a permanent group that will advise the organisation and will nominate a representative to sit on the AE Board.

The example of the Scottish Dementia Working Group

Although the idea of having a working group for people with dementia on a European level is new, national local groups for people with dementia exist in a number of European countries. A particularly successful example is the Scottish Dementia Working Group (SDWG) which was invited to talk about its work and its activities over the past ten years. In line with the team spirit of the group, the presentation was shared between the Chair Agnes Houston, the Vice-Chair David Batchelor, the group’s co-founder James McKillop and a new committee member Archie Latta.

The group is run for and by people with dementia. Amongst the group’s important achievements, the speakers highlighted the group’s involvement with the Dementia Strategy, the drafting of a Bill of Rights and the Government’s “Skills and Knowledge framework”. It has also made a DVD and has recently published a popular joke book for Comic Relief. According to Agnes, the members of the SDWG have developed a reputation for being enthusiastic and fearless campaigners and have even been involved in less traditional activities such as training occupational therapists and university students. Membership of the group has increased from a few active members to over one hundred. Whilst this growth is positive, James highlighted that one of the key challenges for the group was how to cope with this larger membership without losing intimacy and informality. He stressed the importance of people with dementia maintaining ownership of the group so that it can act independently.

David underlined that the key to success was to keep objectives clear, simple and measurable. By acting on feedback, the group was able to respond and identify priorities as they arose. However, the members also stressed other factors such as good fortune, good timing (as policy makers now wanted to listen), the fact that there is now a Scottish government and last, but in no ways least, the funding and support provided by Alzheimer Scotland. The speakers agreed that the group could best be described as focused, disciplined, professional, respectful of others and delivering what it promises.

Successful initiatives on a national level

Participants heard of other groups for people with dementia in Europe, each having slightly different ways of working. Rob Groot Zwaaftink and Mieke and Victor Meijers described the group in the Netherlands known as the “Kerngroep Dementia” which was set up two years ago and has seven members. After permission by the participants, the group’s discussions are posted on the website so that others may read them. They have found this to be extremely popular, having around 3,400 hits each month.

A similar small group exists in the Czech Republic and Nina Balačkova highlighted how the contacts with other people with dementia had given her greater self confidence in speaking out in public and in raising awareness.

Helga Rohra and Helga Schneider-Schelte spoke of peer support groups in Germany. On a local level, some people with dementia are involved in the Boards of the regional member organisations of the German Alzheimer Association.

Learning from mistakes

Rob Samuelsen spoke of the reference group of people with dementia which has been set up in Norway and which the Norwegian association consults on a regular basis. Whilst this proved successful, the involvement of a person with dementia on the national Board was not satisfactory as the expected contributions from the person in question were not clearly defined at the outset.

Daphne Wallace explained that the UK group had lost momentum when one of the key instigators left. In addition, the group had faced financial difficulties. She was therefore delighted that the Alzheimer’s Society had recently appointed Gaynor Smith as User Involvement Manager. Gaynor explained that she is currently focused on developing a consistent involvement policy and guidelines for staff, as well as ensuring that volunteers are confident working with people with dementia.

Eleanor Edmond from the Alzheimer Society of Ireland explained how difficult it had been to find people with dementia who are willing to be open about it, due to the stigma attached to the disease. The Society found that it was essential for people to feel valued and listened to before they were prepared to talk openly. Eleanor was therefore delighted that Dermot Slevin was prepared to do so as a person with dementia from Ireland. Dermot underlined how he had found that being part of a group had given him the confidence to speak out.

These presentations showed that involving people with dementia is not without its difficulties. For that reason, participants of the meeting stressed the need to monitor and assess involvement policies and to learn from past mistakes.

Learning from each other

The meeting was also a great opportunity for member organisations interested in setting up working groups for people with dementia or in improving their involvement strategies to learn from the existing initiatives. Luis Garcia Sanchez from the Spanish Alzheimer Foundation had expressly come to Glasgow to present the plans of his organisation and to get advice and guidance from the participants. According to Štefanija Lukič Zlobec (Slovenia), the meeting was a true eye opener as it made her aware that setting up a group for people with dementia should be one of the key priorities for her organisation.

Barriers to involvement

It was evident during the meeting that there are barriers which need addressing to facilitate people with dementia being able to join a group. Perhaps most obviously, people with dementia need to know that such a group exists. In Scotland, this issue is addressed by Alzheimer Scotland’s Dementia Advisers: part of their job description is to offer information about the SWDG.

Antonia Croy, Alzheimer Austria, highlighted that sometimes over-protectiveness by carers could become a barrier and that it was necessary to help carers to understand the advantages of specific groups for people with dementia.

Getting our message to policy makers

Access to politicians by people with dementia varied considerably. Agnes reflected that ten years ago it was rare for people with dementia to speak out, whereas nowadays the SDWG is routinely heard at the highest policy level. Irina Vasileva Ilieva and Vasilka Krumova Dimitrova spoke of the round table discussions in Bulgaria between policy makers, Alzheimer associations, people with dementia and carers. Whilst eight events in eight locations had been carried out, it was difficult to maintain discussions as there had been four changes of ministers in just one year.

In the Netherlands, the Kerngroep Dementia was still very small and the Dutch delegates felt that they had not yet reached the point where they could confidently  approach the government.

James McKillop was impressed by the number of local support groups for people with dementia in Germany – but also wondered whether the lack of a central spokesperson was an issue when trying to communicate with the government. In Scotland, he said, it helped to be able to speak with a collective voice.

Involving people with dementia

The meeting served as a forum on what is needed to involve people with dementia and to help them achieve their goals. It identified the following areas in which people with dementia should be involved:

  • The production of guidelines on how to influence government at local and national level
  • Information written for, and by, people with dementia
  • Guidance on speaking out in the media
  • Guidance on good practice involving people with dementia
  • Gathering ‘soft’ information (individual, ad hoc accounts from people with dementia on a range of issues) to help inform government and others
  • Networking

Helga Rohra emphasised the importance of portraying a balanced picture of dementia, rather than focusing solely on the end stage, saying “after all, we all die”.

All participants agreed on the importance of early diagnosis and the absolute right of people with dementia to be told their diagnosis as prerequisites for involving people with dementia. In addition, post diagnostic support, including access to peer support, were identified as priorities for all countries.

Mixing business and pleasure

The highly productive meeting took place in a relaxed and friendly atmosphere. This was helped by the arrival of participants on Sunday, as they were treated to a traditional “High Tea” followed by a small welcome reception and a joint dinner. This informal get-together made sure that people felt well acquainted by the official start of the meeting on Monday morning. Anyone seeing the participants in action would have thought it was a reunion of old friends.

On Monday evening, we had the great honour of being invited by the Mayor of Glasgow to a civic reception in the prestigious and sumptuous Glasgow City Hall where we were joined by other members of the Scottish Dementia Working Group, as well as key representatives of the City of Glasgow and Alzheimer Scotland. The guided tour of the City Hall which rounded off the evening was another great experience for all participants. The welcome provided by Glasgow City was clear testimony for the recognition of dementia as a priority on a local level.

Looking back on two days

Over the two days, there may have been tears when participants shared particularly difficult moments, but my main memory of the meeting will be of the many laughs that we shared. The enthusiasm of all participants, their willingness to share their own experiences and the openness to learn from one another were truly inspiring. It seems clear to me that Alzheimer Europe was right in deciding to continue to improve the way in which we involve people with dementia. Our goal of developing a European Working Group of People with Dementia was welcomed and supported by everyone at the meeting.

I am confident that this first meeting with nine people with dementia will only be the first of many and that we will be able to build on this success. The seeds we planted in Glasgow will hopefully result in new successful initiatives on a national level and a dynamic and productive collaboration of people with dementia on a European level. The next meeting is already planned, at our Annual Conference in Vienna later this year.

My thanks go to Jan Killeen, Policy Consultant of Alzheimer Scotland who expertly moderated the two day meeting and ensured that all participants had sufficient time and were able to actively contribute to the discussions. Above all, Alzheimer Europe is indebted to the people with dementia who freely shared their experiences and provided us with invaluable advice and guidance on how to continue our work.

Participants with dementia reflect on the first-ever meeting of the EWGPWD

Nina Balackova (Czech Republic)

It was very useful for me and I hope that even for the Czech Alzheimer Society too. I was a tired, but happy there! It was interesting to hear about other countries, how it works in their Alzheimer society and how people with dementia live there. We were surprised to visit the Scottish Parliament. We had wonderful afternoon there. For me, personally, It was useful as I have been a little sad since February. I see that Mr Alzheimer starts to a little win over me. But, I was very happy in Glasgow and with my carer and friend together we had a lot of fun. And I saw many people with dementia how hard-working they are. I admire them! I have new energy to fight with my health.

David Batchelor (Scotland)

I am not sure when it happened but I suddenly realized we were seeing the birth of something big, like opening a window through which you could see a tremendous prospect.

Agnes Houston (Scotland)

I found it inspiring to meet others who actively campaign just like we do in the SDWG. It’s nice to be not alone and to know our brother and sister in Europe are the same as us.  Dementia does not respect boundaries or country differences. I felt at home and others confirmed the reasons why we need to continue and join together to share our knowledge and the old adage “Knowledge is power” and “that there is strength in numbers”. In saying all of this, it was done with laughter and joy. I felt energised and encouraged and enabled that I too could continue to live with a diagnosis of Dementia. I felt it was like a think tank of Dementia - a meeting of minds with the purpose of helping others to attain to be all they can be.

James McKillop (Scotland)

What I hadn't anticipated was how quickly people would gel together, and an onlooker would have imagined we were all old friends. The meetings were conducted at a pace to suit all, and everyone had a chance to contribute in their own way. Some countries, new to the game, did not think they had achieved much, but in fact, they had done what others took years to do.  So I imagine people took heart from being on the right track. Did I enjoy it?  Yes!  It is nice to know you are not alone in the dementia world and you can always learn from listening to others.  People were just so nice and helpful.  I like to think all the delegates made a difference in some way and inspired others. As I sat there and looked around, I felt overwhelmed.  There was a sense of history in the making.  Years ago we would never have met.  Now we meet as citizens, who are working to improve the lot of people with dementia and their carers throughout every hamlet in Europe. I could tell from the charged atmosphere, that people were motivated to go back to their respective countries and try even harder.  Some who shared similar cultures and languages, seemed to want to keep in touch.

Helga Rohra (Germany)

A really historic moment  - for the first  time there was a meeting of a European working group for people with dementia. A real highlight in my life, as a dementia activist for the last few years in Germany I was keen on exchanging ideas with my friends in Europe. I learned a lot how we could get involved in programs. A good example to be followed is the Scottish Dementia Working group – politicians there understand the dementia as being a phenomenon more than a problem. I wish we could speak up in the same way in Germany. I wish we had the same chance like in the Netherlands, to have a “carer/assistant” for a lifetime, the moment we get diagnosed. I wish we get many enthusiastic young people to work in Alzheimer associations, to promote our cause – like in Spain. But I am also grateful that my country gives us so many opportunities to foster our still existing abilities – compared to the Czech Republic or Slovenia. Those days together gave us affected by dementia a strong feeling of solidarity.  Europe  -  dementia can overcome boundaries. I am grateful to AE for this unique opportunity, and many should follow – you all living you new life with dementia believe in your abilities and join us in our working group.

Dermod Slevin (Republic of Ireland)

Before Glasgow, I had never spoken with anybody else who openly had a diagnosis of dementia. I’ve always found this surprising given that so many people are supposed to have it! I felt at home as soon as I arrived in Glasgow, right from the welcome in the hotel lobby and the big hugs from Jan and Agnes. It was hard to figure out who had dementia and who didn’t! There was a lot to take in over the few days but the atmosphere was so warm and welcoming. I never felt ill at ease. A huge amount of work clearly went into organising the summit and making it so welcoming. I’d really like to thank everyone involved. I feel that there is huge benefit to be had from meeting people in similar situations.  It has been a kick in the backside (in a nice way!) to stay active and be positive.  As was mentioned several times in Glasgow, a diagnosis of dementia can lead to depression and withdrawal. Lack of good information or support at diagnosis is a big problem. I used to be involved in community organisation, I used to love travelling. Since my diagnosis I hadn’t travelled or been an activist in any way. Now I feel my confidence coming back. World domination beckons!

Daphne Wallace (UK)

I did enjoy the meeting very much. It was so interesting to hear about the situation in other EU countries. Some of them are so far behind us with no money to really make much noise! I was disappointed that there were some countries unrepresented where I have friends. I hope that the Working Group continues to meet and goes from strength to strength. I would love to attend the next meeting if that is possible. We are in a situation of review about how we keep contact with people around the Country who have dementia and are able to participate in increasing understanding of the role of those with an early diagnosis to speak out and campaign and also to educate.


EWGPWD Glasgow April 2012


Last Updated: Monday 19 November 2012