30-31 October 2008: French Presidency Conference "The fight against Alzheimer's disease"
A major step forward to achieve European collaboration on Alzheimer’s disease was made at the conference “The fight against Alzheimer’s disease and related disorders,” organised by the French Presidency of the European Union and hosted by Health Minister, Roselyne Bachelot. The conference drew unprecedented attention to the plight of the 6.1 million people with dementia in Europe, as well as their carers, by having the support of not only national ministers, but of the French President himself.
Describing Alzheimer’s disease as the disease where a “rich person becomes poor” Didier Houssin, Director-General for Health at the French Ministry of Health, Youth and Sport, Ministry welcomed delegates who included people with dementia, carers, national and European policy makers, Alzheimer associations, experts and professionals.
The first section of the Conference was dedicated to explaining why this disease should be considered a European priority. Henry Brodaty, Professor of Old Age Mental Health, University of New South Wales, Australia, opened by telling us that research in dementia is crucial for Europe. Calling neurodegenerative diseases diseases of the 21st century, he presented some sobering statistics: Every seven seconds, a person in the world gets dementia; 25 million people live with dementia in the world in 2008, but this will rise to 80 million by 2040; in Europe the figure will rise to 10 million by 2040 and whilst 1% of most European countries’ GDP is spent on dementia, this is set to triple.
Research, said Prof. Brodaty, is an essential component of facing the challenge of dementia as it informs us of the best method for diagnosis, treatment as well as the best way to help carers. If we are able to find a way to delay the onset of dementia (by 2 or 5 years) then prevalence rates drop dramatically (by 20% to 50% respectively). New approaches to treatment are vital if we wish to stop the progression of the disease or prevent the disease developing, rather than current treatments which can only delay progression. Research into carers has also enabled us to offer appropriate services, but more needs to be done. Summing up, Prof. Brodaty left us with the thought that “research is expensive, but ignorance costs more”.
Challenging the stigma which is often associated with Alzheimer’s disease, Jan Henry Olsen (ex-Minister for Fisheries of Norway) and his wife, Laila Lanes gave courageous and moving speeches. Talking of their decision to be open about Mr Olsen’s diagnosis, Ms Lanes described the unexpected level of interest shown and the stigma they have found associated with this disease saying “so many people say they don’t want to talk about it. Sometimes you have the feeling it’s close to a criminal act (…) but by being open you are able to get a foothold from which you can move forward instead of being left in a wilderness.” She hoped that “every conference, every newspaper that writes about us will help people to accept dementia”.
Having accepted that Mr Olsen’s dementia is an illness, they have decided to make the best out of it and continue to enjoy going to pubs, football, the cinema and socialising. Instead of focusing on what Jan Henry cannot do, they focus on what he can do and Ms Lanes reminds Jan Henry of what a wonderful man he is. “Carpe diem has another meaning for us now”, reflected Ms Lanes.
At a European level much can be done, such as stimulating research and development, creating centres of excellence in every country, acknowledging and financially supporting Alzheimer’s associations, facilitiating NGOs with more fiscal instruments, as well as taking the lead in collaboration with the World Health Organisation (WHO) said Marc Wortmann, Executive Director of Alzheimer’s Disease International.
The second session, opened by Maurice O’Connell, Chairman of Alzheimer Europe, as dedicated to current issues in Alzheimer’s disease. Mr O’Connell said Alzheimer’s disease was “one of the greatest challenges that we face across Europe.” He talked of Alzheimer Europe’s priorities, listed in the Paris Declaration, which include the need for national plans, early diagnosis, awareness campaigns, social support, dementia specific services, carers’ support, treatment, ethical and legal debate as well as recognition of the role that Alzheimer’s associations play. Mr O’Connell spoke movingly of his own family’s fear and denial of the diagnosis of dementia saying “it’s a very lonely place to know your loved one potentially has dementia” and reminded everyone that Alzheimer associations have been the voice of people with dementia “when no one wanted to talk or understand the devastation that was happening”. He also emphasised that in time of economic downturn we must be on our work, not regress.
The highly regarded French plan which began being implemented earlier this year, was presented by its author, Prof. Joël Menard. The core objectives of the plan are to address patients’ needs and family support. Detailing action already taken on the plan, such as the setting up a Scientific Research Foundation,or the introduction of an Alzheimer’s card for people who have been diagnosed, Prof. Menard explained that the implementation included strong monitoring with a direct reporting line to the French President every six months, as well as monthly meetings of the steering committee and the patients committee meeting every three months.
An example of current EU collaboration was given by Jean Georges, Executive Director of Alzheimer Europe who presented the European Collaboration on Dementia (EuroCoDe) project. This project, financed under the EU Public Health Framework Programme, was carried out by Alzheimer Europe in collaboration with 36 researchers from 20 different countries. Highlighting that the working groups have had some interesting results, such as current prevalence figures being underestimated and the cost of dementia in Europe amounting to € 130 bn, Mr Georges concluded by emphasising the need to keep the project ongoing and build upon it.
This belief was supported by Antoni Montserrat of the Health Information unit, DG Health, European Commission, who recognised that EuroCoDe had delivered its intended goal of providing good indicators and created an exchange of expertise in Europe. said that the findings of EuroCoDe detailed the differences between European countries with regard to access to diagnosis, treatment and services and stressed that it is necessary to see what instruments were available to help address these inconsistencies.
Summarising the day’s presentations and parallel sessions, Florence Lustman, General inspector for Finance and coordinator of the Alzheimer Plan, said it was evident that we had for far too long totally underestimated the abilities of people with dementia. She was particularly impressed by the tangible examples given, such as people with dementia becoming engaged and open when visiting a museum. “Believe me” she said, “this is a very positive image and full of hope”. Ms Lustman was convinced that such initiatives, which gave people back their self-esteem, albeit briefly, should be supported and encouraged. She spoke of the presentation given by Nick Fahy, Head of the Information Unit on Health, DG SANCO, European Commission, who had talked of the EuroCoDe project illustrating the Commission’s three pillars of comparison, partnership and pooling. Comparison, she said, is needed to trigger mechanisms for change, partnership and collaboration will facilitate exchange of information and good practice, whilst pooling can lead to consensus, codification and guidelines.
Françoise Grossetête, Member of the European Parliament and Chair of the European Alzheimer’s Alliance spoke of the urgent need to help people with dementia and asked Members of the European Parliament to sign the Written Declaration which she and four colleagues had instigated asking for the development of European action on Alzheimer’s disease. Encouraged by the fact that the Declaration had already received the support of over 100 Members of the European Parliament, she nonetheless called upon Alzheimer associations to write to their MEPs to sign the Declaration. Speaking about the role of Alzheimer Europe she said that it needs to become a centre of coordination and information for Alzheimer associations and all other organisations involved in the field.
Ms Grossetête also appealed to national and European policy makers to ensure that Alzheimer’s disease is recognised as a neurodegenerative disease per se and not hidden under mental health issues generally. Finally, Ms Grossetête talked about the European reference networks mentioned in the current draft legislative proposal on cross border healthcare, saying that these centres will enable better European cooperation, better management of new healthcare technologies, better pooling of data and impact assessment.
Confirming the need for coordinated efforts, Valérie Pécresse, the French Minister for Higher Education and Research, reminded delegates that the French Alzheimer Plan aimed to better finance and coordinate research. She disclosed that only 15% of their research efforts are coordinated with EU projects which can lead to unnecessary duplication of research efforts and wasted resources. She was therefore encouraged by the recent decision of the Council of Ministers to further increase European collaboration on research into Alzheimer’s disease. Valérie Létard, the French Secretary of State for Social Solidarity reiterated that each Member State can both learn from and teach its neighbours and expressed her hope that a closer collaboration between European countries would not only build on research, but also lead to an exchange of best practices on care approaches and care systems.
The European Health Commissioner for Health, Androulla Vassiliou, said that the 19 million people in Europe who experience the devastating consequences of Alzheimer’s disease, have a right to expect answers. The Commission, she said, has acted for more than a decade on this problem and continues to do so under their 2008-2013 White Paper for Health. In particular, the commissioner mentioned that the EU health strategy will include a better understanding of the neurodegenerative diseases such as Alzheimer’s disease. Whilst expressing her wish that the Commission continue to have good cooperation with Alzheimer groups in the future, she said that we should respect that people should age with dignity and receive the same rights as any other age group. She went on to thank Alzheimer Europe for carrying out its project “European Collaboration on Dementia” which could form a basis for future European action in the field.
Delegates were assured that the building momentum would not be lost when the European presidency is taken over by the Czech Republic and then by Sweden next year. Maria Larsson, the Swedish Minister for Senior Citizens and Public Health, said that healthy ageing is on her agenda and called for it to be put permanently on the agenda.
There has been a strong commitment to addressing dementia in Germany, with € 50 m being pledged annually to research. Marion Caspers-Merk, the Parliamentary Secretary of State in the Federal German Health Ministry believes that we face three consequences of our ageing populations a) we have opportunity to have a long quality of life, b) we have the challenges associated with old age (such as healthcare, demographics etc) and c) we have the risk that we cannot meet that challenge. The Health Secretary looked to Europe for cooperation, collaboration and coordination and said that she is happy that Alzheimer Europe is supportive of the German initiative to set up a European ethics network and hoped that the Commission would also support this initiative.
Sofija Mazej Kukovic, the Health Minister of Slovenia emphasised how useful information for carers is just as important as research She reminded delegates that the Mental Health Pact calls for action to combat stigma and social exclusion of the elderly and emphasised the importance of well-known personalities with dementia being open to help address this.
Participants throughout the Conference had thanked Jan Heny Olsen and Laila Lanes for sharing their experience. Mr Mario Galea, Parliamentary Secretary for the Elderly and Community Care from Malta, spoke of the Olsens’ courage and strong message they had conveyed and he reiterated the fact that unfortunately stigma with the disease is still a reality. He felt that this issue needed the support of not just NGOs but also of the EU institutions if we are to be successful in eradicating it. For his part, he said “being a politician, I will try to keep my promise! It is the duty of us politicians to ensure and safeguard peoples’ rights and dignity”.
Nicolas Sarkozy, President of the French Republic, closed the Conference with a passionate speech, laying out concrete ways in which he sees Europe addressing the “scourge” of Alzheimer’s. He said that he wanted to commit himself personally because of the numbers of people who have Alzheimer’s disease, because almost all families are affected and because he believes that he, along with the Ministers, have a duty not to take a fatalistic approach but be active in this fight.
Speaking of the French plan, he said that it was the first which developed a comprehensive approach which integrates research, care and support with the goal being to intensify efforts in each area but also to develop synergies which improve the quality of life for patients and their relatives.
However, the French President does not see this fight confined to a national level and said that it is essential to take the fight against Alzheimer’s to the whole of Europe, for which the creation of a European Plan is essential. He wishes that the European Council adopt, before the end of the French EU presidency, recommendations inviting each Member State to develop national Alzheimer plans by 2010. These recommendations would serve as a kind of toolbox, from which each Member State will extract ideas, whilst recognising their individual specificities and respecting the principle of subsidiarity. While each plan will be different, the priorities will be common. A global scientific, medical and social approach needs to be shared by all.
In our fight against dementia, Europeans, no matter which Member State they are from, face common issues and therefore Mr Sarkozy proposed three ways in which Europe can work together:
- Research: Whilst acknowledging the recognition given by the Competitiveness Council to build a European Research Area earlier this year, Mr Sarkozy also lamented the low investment into research for Alzheimer’s disease. Rather than working in isolation or duplicating other work, money could be assigned to joint research programming. In addition, he said that Europe should promote the mobility of researchers and he talked of offering Alzheimer scholarships to young researchers who would work in other European countries. By 2010, Member States should be invited to develop a coordinated plan for research.
- Care and support: By sharing best practices in care and support, Member States can develop a common set of recommendations. Again, he highlighted the need to collaborate to avoid isolation and duplication and cited the EuroCoDe project as providing a rich source of information on various aspects of Alzheimer’s disease and called for more initiatives like EuroCoDe.
- Ethics: Whichever country we live in, questions, such as how to obtain the consent of someone entering a home or how to act with a person who has lost their usual method of communication, are common to all Europeans dealing with this disease. Advocating ethical reflection and the exchange of good practices, the President believed that Europe should support the creation of such a network.
Finally Mr Sarkozy explained why he feels he should continue to speak of the fight against Alzheimer’s disease when, at the same time, we face an economic crisis, “If we were dealing with people’s health only when there is global growth it would be unacceptable… I want to say that whatever the context we are in, the fight of all Europeans against Alzheimer’s disease is a priority.”
A Ministers’ press conference followed. For all those who have long fought for action against Alzheimer’s disease, the Minister’s round table and support of the French President was a welcome sight. The coverage and visibility which the French Presidency has given to Alzheimer’s disease by organising such a Conference cannot be underestimated. Delegates left the auditorium with a renewed and real hope that maybe, at last, concrete measures will be decided and implemented and, that the conference would, as Françoise Grossetête hoped “be a stepping stone to a European Plan, which we have all been waiting for.”
Last Updated: mardi 16 septembre 2014