3 March 2009: Lunch debate "Towards a European Action Plan on Alzheimer's disease"
“Towards a European Action Plan on Alzheimer’s Disease” was the focus of Alzheimer Europe’s 6th lunch debate which was hosted by Françoise Grossetête (MEP, France) and presented by both Florence Lustman, the Coordinator of the French Alzheimer’s Plan together with Antoni Montserrat, the Policy officer for rare diseases, neurological and neurodevelopmental disorders, Directorate of Public Health, European Commission.
Jean Georges, Executive Director of Alzheimer Europe, introduced the debate by paying tribute to the “champions” who had helped to put a European spotlight on Alzheimer’s disease: the French President who, during the European French Presidency had given his personal commitment to ensuring that Alzheimer’s disease be addressed, the politicians who have been active and supportive of the European Alzheimer’s Alliance, in particular Françoise Grossetête for her unrelenting support of Alzheimer Europe’s work and her determination alongside MEPs John Bowis (UK), Katalin Levai (Hungary), Jan Tadeusz Masiel, (Poland) and Antonis Traketellis (Greece) for initiating and seeing through adoption of the Written Declaration 80/2008 on the priorities in the fight against Alzheimer’s disease, and last, but by no means least - the people who make up the member Alzheimer associations of Alzheimer Europe. Mr Georges said that the support of the Declaration, like dementia itself, had cut across borders, party allegiances and nationalities.
Jean Georges explained that both the host of this lunch debate, Ms Grossetête, and the presenters, Ms Lustman and Mr Montserrat, had been hugely instrumental in helping to make dementia a European priority.
Ms Lustman took to the floor first and gave an overview of the comprehensive 3rd French Alzheimer’s Plan, which was launched last year. Unlike previous plans which focused on health issues at a national level, she highlighted that this 3rd Plan also took a global perspective and included research issues too. In addition, Ms Lustman explained that there is a direct report line to the President of France, Nicolas Sarkozy, and that this personal commitment ensures that the Plan is taken seriously at the highest level of State.
Although the long-term goal is to find a cure for the disease, there is no sign of a breakthrough within the next five years and therefore, said Ms Lustman, the real challenge is to improve the quality of life for patients and carers and that it is important to get a continuous chain of care which is lacking at present. She was pleased that their educational programme for carers had just been published.
Concluding her presentation, Ms Lustman reflected on the achievements in the field of Alzheimer’s disease which had been made during the recent six-month French Presidency, highlighting the conclusions regarding neurological degenerative disease which were made by the Competitiveness Council as well as the conclusions by the Health Council which decided to combat age-related diseases and called on Member States for national initiatives. The Competitiveness Council’s conclusions have resulted in the launch of a European initiative this year : some Member States have agreed, on a voluntary basis, to meet, discuss and pool research in dementia in order to prevent duplication in research and maximise the investment. Ms Lustman is impressed that already nine countries have committed to this process. However, she reminded the audience that we still do not know for certain the number of people with disease at a European level as many countries have poor systems of diagnosis and this, she stressed, has to be addressed.
Françoise Grossetête then spoke of her delight that the European Parliament’s Written Declaration had been adopted and thanked Alzheimer Europe and its national associations for their hard work in drawing attention to this issue, enabling the European Alzheimer’s Alliance to take up its role. She stressed the fact that it is not possible to speak about the demographic problem without taking into account the consequences of an ageing population.
Ms Grossetête said that whilst many politicians were sympathetic to the problems associated with dementia, it was vital that this sympathy was turned into the positive action. She acknowledged the role that national associations had made by asking their MEPs directly to give their support and spoke of her pride in her Parliamentary colleagues, of which some 60% had signed the Written Declaration.
Whilst the first step has been made, Ms Grossetête reminded the audience that there is much more work to be done if we are to be sure that people with dementia and their carers receive the appropriate support and services. Recognising the work France has already begun, she highlighted the need for other countries to also address this disease and emphasised the importance of coherent research which can be put to a common use. She concluded that whilst a good start had been made that now it was time to “roll up our sleeves” and continue the work carried out by the Council and Commission.
Speaking on behalf of the European Commission, Antoni Montserrat, told participants that the Commission first took action on Alzheimer’s disease in 1996. More recently it had given its support to Alzheimer Europe’s European Collaboration on Dementia project (2006-2008) (EuroCoDe) which has resulted in three yearbooks highlighting stark differences between the 28 Member States. He explained that the differences found are extremely useful as they as they make people listen, acting as a basis for further actions. Indeed, the results from EuroCoDe have changed the situation of the Commission’s Health Strategy.
Directly addressing the call for a European health action plan, Mr Montserrat explained that the Commission does not have a tradition for “disease specific” actions plans with the exception of cancer, communicable diseases and, just recently, rare diseases. He also said that the Commission does not have the means to adopt action plans for all different kinds of diseases. However, Mr Montserrat said that the Commission is in a position to engage Member States in addressing a particular issue and monitor implementation of the recommendations. This is why the two recent Council’s recommendations, which call for action in the field of Alzheimer’s disease, together with the momentum built in the French Presidency, have stimulated the Commission to act and work on an Alzheimer’s initiative and Mr Montserrat proceeded to lay down the Commission’s plans to do so.
Firstly Mr Montserrat spoke of the joint programming initiative on research which is being developed, with the aim of avoiding the current waste and duplication of research by inviting national member states, on a voluntary basis, to pool ideas together. To date, nine countries have signed up and the Commission hopes that more will join before July this year. The Commission also hopes to build on information gained from EuroCoDe, which he said, was an excellent project achieved by good collaboration with Alzheimer Europe. To contribute to track early diagnosis of dementia across Europe, the Commission plans to carry out “The European Health Examination Survey” including a cognitive decline module for which people will be invited to go to a clinician and be examined. The Commission can also employ initiatives used by the Social Protection Committee in order to establish agreement and definition for standards of care.
However, in order for the Commission to be effective for people with dementia and their carers it is essential, said Mr Montserrat, that it works with a solid partner, such as Alzheimer Europe, as they need organised dialogue with access to EU patient organisations. He spoke of the importance of developing best practices guidelines and his hope that work done in the Yearbooks be extended.
Therefore, there are various initiatives which are open for consideration by the Commission when addressing Alzheimer’s disease. Indeed, one day it may be possible to conclude what actually constitutes a “healthy brain lifestyle.” Whilst the Commission’s approach is not extensive nor ambitious, it is possible to reuse existing initiatives in an imaginative way. Mr Montserrat concluded by saying that in an ageing society, (which the Swedish presidency has pledged to make a priority), perhaps the three most useful approaches for the Commission to employ are to be found within their public health, research and social protection activities.
Sirpa Pietikäinen (MEP, Finland) stated that there is a need to do something at an EU level in terms of patient’s rights and role of assessment and suggested the model of environment impact assessment to speak on someone’s behalf be applied. However, Antoni Montserrat said that rather than say a particular model should be employed, it is preferable to say that any one model is one which may be considered.
Whilst thanking the European Parliament for their “fantastic support”, Alicja Sadowska of the Polish Alzheimer’s association, also highlighted the fact that there are differences between the Member States, with some governments not yet ready to face the problem or do anything about it. She asked that those MEPs who are elected in June to support our work to ensure that the associations are not left powerless.
Again, recognition was given to the work Alzheimer associations are doing when Milan Cabrnoch, (MEP, Czech Republic) thanked the associations and said that, as politicians, they need the associations’ advice as without this they don’t know which problems exist.
Martin Banks, Editor, Parliament Magazine asked for examples of recognised public figures who have/have had this disease. Jean Georges cited a few examples such as Ronald Reagan, Margaret Thatcher, Terry Pratchett and Iris Murdoch but emphasised that different countries have different levels of openness about this disease.
Thanking the host and presenters for their commitment in so strongly supporting making dementia a European priority Jean Georges made special mention again of the Written Declaration’s initiators. He closed the meeting by wishing all MEPs the best of luck with their forthcoming elections.
3 March 2009: Lunch debate "Towards a European Action Plan on Alzheimer's disease"
Last Updated: Tuesday 19 February 2013