Alzheimer Europe talks to Françoise Grossetête about the launch of the European Alzheimer's Alliance (May 2008)

Alzheimer Europe: Ms. Grossetête, last year you accepted to become the Chairperson of the European Alzheimer’s Alliance and since then you have been actively advocating to make Alzheimer’s disease a European priority. What was your motivation in supporting this cause?

Françoise Grossetête: Recent research has shown that 6.1 million Europeans have Alzheimer’s disease or another form of dementia.This is only the tip of the iceberg, since the disease does not only affect patients, but the family and carers of the patient are equally affected. At the same time, these numbers will continue to grow with the ageing of the European populations and it is expected that by 2050, the number of people with dementia will have grown to 15 million. Add to that the fact that Alzheimer’s disease is already the first cause of dependency and it is clear that we need to make this a European public health priority.

AE: How can a Member of the European Parliament support Alzheimer Europe’s campaign to make dementia a European priority?

FG: There are different ways in which MEPs can become active. In some of the more recent political discussions in the European Parliament, I have ensured that the specific needs of people with Alzheimer’s disease are not forgotten. This was the case for a recent discussion on the participation by the Community in a research and development programme aimed at enhancing the quality of life of older people through the use of new Information and Communication Technologies (ICT). The European Union will contribute 150 million euro to the programme.

I welcomed the adoption of the report and highlighted the need for the European Union to address the challenge of the ageing of European populations, in particular with regard to the growing use of technologies to enhance the quality of life of older people by alleviating and supporting people with memory, visual, auditive and mobility deficiencies.

Also, at the hearings of Ms. Androula Vassiliou, the new Heath Commissioner, I asked what she intended to do in the field of Alzheimer's disease, the third cause of mortality in the world and I was encouraged to hear that she gives primary importance to mental health amd she feels that if we do not take action now, we will face many problems in the future.

But, we do not only work in an indivual capacity, but work alongside policy makers from the same country or from the same political group. And I am personnally encouraged by the great interest that different MEPs have shown to the European Alzheimer’s Alliance which I have the honour of chairing.

AE: Could you describe the remit of the European Alzheimer’s Alliance?

FG: The European Alzheimer’s Alliance is a non-exclusive, multinational and cross-party group of Members of the European Parliament. We currently count 44 members from all political groups in the European Parliament and from 17 different European countries.

Our Alliance's mission is to:

• Give the political signal that immediate and concerted action is needed at European and national level in the field of prevention, diagnosis and treatment of Alzheimer's disease, research and social policies,
• Influence the European political agenda,
• Foster a favourable environment at European and national level where adequate resources are devoted to address the public health issue raised by Alzheimer's disease,
• Promote actions that will give dementia and Alzheimer's disease the priority it deserves at European and national level,
• Exchange information and work closely with European networks active in the field of Alzheimer's disease.

AE: What are the activities of the Alliance?

FG: For a recently created group of Members of the European Parliament, the Alliance has already carried out an impressive list of activities. Alzheimer Europe launched its “Dementia in Europe Yearbook” comparing the social support systems of different European countries in the European Parliament in November of last year and we were delighted that Social Affairs Commissioner Vladimir Spidla participated. He gave a very clear commitment to including the social aspects of Alzheimer’s disease in European Union activities and also highlighted the need for concerted action in order to prevent elder abuse.

Astrid Lulling, one of my colleagues from Luxembourg and also a member of the Alliance, hosted a week long exhibition in the European Parliament to coincide with World Alzheimer’s Day on 21 September. The conference was entitled “Remember those who cannot” and provided a real call for action for us policy makers. I was really delighted to see so many of my colleagues participating at the launch of the exhibition.

In April of this year, the Alliance organised a lunch debate on the possible prevention of Alzheimer’s disease. Professor Lutz Frölich from Mannheim provided us with an exhaustive overview of the current scientitic knowledge.

In April, I have also worked on a Written Declaration on Alzheimer’s disease which I will deposit together with my colleagues from the Alliance, Jan Masiel from Poland, Brian Crowley from Ireland, John Bowis from the United Kingdom and Joseph Muscat from Malta.

AE: Could you please explain to us what a written declaration is and what the declaration is about?

FG: A written declaration can be deposited by up to five Members of the European Parliament and is open for signature for a period of two months. If after this time, more than half of the Members of the European Parliament have signed the Written Declaration, it becomes an official document of the European Parliament. If that is not the case, the document unfortunately lapses.

In our Written Declaration, we call on the European Commission and the Council to recognise Alzheimer’s disease as a as a European public health priority and develop a European action plan to:

• foster pan-European research into the causes, prevention and treatment of Alzheimer’s disease,
• improve early diagnosis,
• simplify procedures for patients and carers and improve their quality of life,
• promote the role of Alzheimer associations and provide them with regular financial support.

AE: France already seems to be very active in the fight against Alzheimer’s disease. Could France be a model for the rest of Europe?

FG: I am indeed proud of the very strong commitment that President Sarkozy has given to the fight against Alzheimer’s disease. He pledged 1.6 billion euro for the implementation of the Alzheimer Plan which runs from 2008 to 2012 and the plan will not focus solely on increasing our understanding of the disease, but is a truly comprehensive strategy covering the medical, care, ethical and legal aspects of the disease. I am of course also aware that other countries, such as Germany and the United Kingdom are also discussing new ways of prioritising dementia in the development of their own research and public health activities.

In the second half of this year, the French Presidency of the European Union will dedicate a European conference to Alzheimer’s disease and I hope that this conference will give a clear signal from all Health Ministers for increased collaboration between European countries in medical research, but equally in the exchange of best practices in the field of the care and support of people with Alzheimer’s disease.

AE: Ms. Grossetête, Thank you very much for your time and your continued support to our campaign

Françoise Grossetête (France) looks back on the past successes of the European Alzheimer's Alliance (June 2009)

Alzheimer Europe (AE): Mrs Grossetête, your mandate as Member of the European Parliament is ending with some remarkable achievements in raising awareness that dementia, and in particular Alzheimer's disease, are a public health priority. Could you briefly remind us of these achievements?

Françoise Grossetête (FG): It is true that within a record period of time, the urgency to tackle Alzheimer's disease, both in terms of public health and research, has been echoed by the Member States.

I am proud that France has been a driver in this campaign: first, the very comprehensive French Alzheimer plan launched by President Nicolas Sarkozy at the beginning of 2008 has caught the attention of a number of European policy makers. Then, the decision to make Alzheimer's disease a priority of the French presidency of the EU led two Council of Ministers to produce recommendations. The first recommendations, from the Competitivity Council, encourage the Member States to engage together in the fight against neurodegenerative diseases, and mentions specifically Alzheimer's disease. The second recommendations, from the Health and Social Affairs Council, call on the European Commission to adopt an initiative in 2009 that will reinforce European collaboration in research and exchange of good practices in the areas of prevention, early diagnosis, treatment, social support and rehabilitation. Ethical issues and the protection of patients rights are also featured in the recommendations.

AE: In the European Parliament, the European Alzheimer’s Alliance, of which you are President, has also given a strong signal that it was urgent to act. What has been the role of the Alliance and what are your views on this group?

FG: The Alliance has been a driver in raising awareness at European level and it is with really great pleasure that I have engaged in its work. The support I have received from four of my fellow MEPs to produce a European Parliament Written Declaration on the priorities in the fight against Alzheimer's disease, as well as the support of a large majority of my colleagues in the European Parliament, clearly evidence the importance of the topic. This Written Declaration also calls for a European action plan in the field of research, diagnosis, simplification of procedures for patients and their carers and improvement of their quality of life.

The priorities of Alzheimer Europe's Paris Declaration, that inspire the work of the Alliance, have received an overwhelming response within the European Parliament. It is really remarkable that MEPs from the 27 European Member States and 5 European political groups have supported the Paris Declaration and/or joined the Alliance.

I hereby wish to congratulate Alzheimer Europe who has managed to create the synergies favourable to such a European political wave. .

AE: The European Commission has also given a strong signal. Could you tell us a bit more?

FG: It is comforting and encouraging that the European Commission, the third major EU instititution, has heard the recommendations of the Council and European Parliament. At the opening of the EU Open Health Forum, the Health Commissioner, Androulla Vassiliou, announced a European Commission initiative on Alzheimer's disease within the course of 2009. Some preparatory work is currently taking place with various partners in order to shape the initiative's modalities.

AE: You will be running in the next European elections. If you are re-elected, what will your priorities be to safeguard the interests of the people with dementia and their carers?

FG: I am determined to continue my engagement. Of course, I will follow the Commission's initiative and the proposals that will be made with great attention. It will also be imperative to remain vigilant and ensure that the Council recommendations of 2008 are followed by concrete actions. The European Alzheimer’s Alliance must be perpetuated during the next mandate and be granted a clear recognition from the European Parliament. We need to keep the momentum and capitalise on the achievements right from the beginning of the next mandate.

AE: Mrs Grossetête, thank you very much for your support. Alzheimer Europe wishes you all the best for the next elections we look forward to continuing working with you in the future.

We can reasonably be proud to see that the European Alzheimer's Alliance efforts to put dementia on the European health, social and research agenda during the European Parliament (EP) previous mandate, combined with the impulse given during the French Presidency and the work of the European Alzheimer's Associations, have significantly moved the European dementia agenda forward.

After the European Commission presented in July 2009 its Communication on Alzheimer's disease and its proposal for a Council Recommendation on measures to combat neurodegenerative diseases through the joint programming of research activities, some Member States have reinforced their commitment : at the time of printing this magazine, they were pulling together a European Action Plan on dementia with, hopefully funding from the Public Health Framework Programme, and had engaged in the Joint Programming of the dementia research agenda.

Public health (prevention of dementia, early diagnosis), research (improve the understanding of dementia and coordinate research), social protection (exchange of good practices with regards to the diagnosis, treatment and financing of treatments for Alzheimer's disease), the rights and autonomy of people with dementia as well as the stigma they experience will constitute the four dimensions of the Action Plan embedded in the Commission's Communication.

The Joint Programming particularly aims to engage the Member States to work towards a common vision of how research, cooperation and coordination at European level can help us understand, detect, prevent and treat Alzheimer's disease. Some 20 Member States have agreed to participate. They are currently developing a common research agenda and putting the management structure in place.

I am delighted that Alzheimer's disease is one of the EP’s successes : our current mandate starts with some 42 MEPs having renewed their commitment or joined the Alliance. In 2009, the EP Written Declaration on Alzheimer's disease which I initiated with four other Alliance members was adopted by close to 70 % of the Chamber and the EP Resolution on the Joint Programming of research to combat neurodegenerative diseases that I coordinated with seven of my colleagues was adopted by a large majority of the Chamber.

It is undeniable that the more united we stand to fight Alzheimer's disease, the more progress we will make. The Alliance's next priorities will be to ensure the momentum does not decrease and that the Member States' Action Plan is followed by concrete deliverables.

As policy makers, we are all too aware that we need to answer the needs of the people who suffer from dementia and their carers. Above all, let's not forget that the figure of 7.3 million of people with dementia is only an estimate, that the figure will dramatically rise in the near future alongside the ageing of the population and that it does not include the still undiagnosed cases.

True, we have achieved a lot but we have no room for complacency. Let's continue our fight against dementia !

France is currently discussing adding a new branch to its social security system to cover ‘dependence’. As in other European countries, the ageing of the  population calls for new measures.

In May 2011, Nicolas Sarkozy, President of the French Republic, gave Senator André Trillard the mission to present a report on the prevention of dependence in elderly people. The mission’s aim was to better understand elderly people’s views on dependence and make some suggestions on what the public authorities could do to preserve the health capital of individuals and prevent the risks of dependence while taking into account informal carers of dependent persons.

As Chair of the European Alzheimer’s Alliance, Françoise Grossetête was invited by Senator Trillard to discuss the topic and provide input to the report. The report was handed to President Sarkozy on 13 July 2011.