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Annual Report 2007

Annual Reports


Preface

Alzheimer Europe adopted the Paris Declaration of the political priorities of the European Alzheimer movement at its Annual General Meeting in 2006. Little did we know then what an influence the document would have for the work of our organisation and what an impetus it would give to our campaign to make dementia a European priority.

The Declaration truly became a rallying point for our member organisations and it provided policy makers with an overview of the main challenges faced by people with dementia and their carers. We were delighted to see the creation of the European Alzheimer’s Alliance in 2007, chaired with dedication, enthusisasm and energy by Ms. Françoise Grossetête, MEP from France and by the end of the year we were able to count on the support of 30 Members of the European Parliament from different countries and different political backgrounds. Our cause truly transcends the traditional political and national borders.

We were also able to organise a week long exhibition in the European Parliament and the turnout of Members of the European Parliament and representatives of other European institutions was very encouraging.

At our lunch debate in the European Parliament in November 2007, we received the clearest signal yet from all three main European institutions (European Commission, European Parliament and Council of Ministers) that our campaign to make dementia a European priority was making progress. We were delighted that Vladimir Spidla, European Commissioner for Employment, Social Affairs and Equal Opportunities gave a very warm welcome to our work. He highlighted the importance of using the open method of coordination to exchange best practices in this field and to include the impact of Alzheimer’s disease in future policies for the elderly and health care planning.

Françoise Grossetête promised the backing of the European Parliament and announced that she would collaborate with her colleagues in order to dedicate a Written Declaration to the fight against Alzheimer’s disease. Finally, the representative of the French Permanent Representation announced at the meeting that the French Presidency of the European Union would make dementia one of its priorities during the second half of 2008. These are important short term goals to work towards.

As Chairperson of Alzheimer Europe, I am of course encouraged by this growing commitment to our cause by policy makers on a European level, but equally on a national level. The close collaboration between Alzheimer Europe and its national organisations was essential for the continued success of our campaign.

Apart from this political focus, Alzheimer Europe was also able to progress considerably on two further key projects, our Commission financed “European Collaboration on dementia – EuroCoDe” project and end-of-life care of people with dementia.

As in 2006, we were able to bring together researchers from different countries and different specialities as part of our EuroCoDe project. In 2007, the first results of the survey on social support systems was included in the second Dementia in Europe Yearbook and the other working groups of the project were equally productive in such different subjects as the prevalence, prevention, diagnosis, treatment and the psycho-social management of dementia, as well as the socio-economic impact of the disease. I am confident that the project will deliver even more interesting results for policy makers and researchers by the end of 2008.

End-of-life constituted another key priority for the organisation and we were able to bring together experts in the field from our organisations, as well as independent researchers. In 2007, the expert group met twice and Alzheimer Europe carried out an extensive literature search on this important subject with a view to producing recommendations to promote good quality end-of-life care.

I continue to be proud of the many achievements of Alzheimer Europe in 2007 and look forward with confidence to the coming years. I am grateful to the commitment of our small, but highly dedicated staff without whom it would not have been possible to look back on such a successful year.

Similarly, I would like to thank all our supporters and I would like to single out in particular the European Commission for the support of our EuroCoDe project, as well as our Luxembourg organisation for the secondment of our Executive Director and the use of our rent free offices in Luxembourg. I am particularly pleased that we were able to further increase the number of companies who supported us in 2007 and my thanks go to all of them: Janssen-Cilag, Pfizer, Lundbeck, GlaxoSmithKline, GE Healthcare, Novartis, Lilly, PhRMA, Wyeth, Numico and Merck Sharp & Dohme.

Maurice O’Connell
Chairperson


Executive Summary

In 2007, Alzheimer Europe:

  • Continued to gather support for its Paris Declaration of the political priorities of the European Alzheimer movement and by the end of 2007 had collected signatures of 139 European and national policy makers, 48 organisations and 714 individuals,
  • Created the European Alzheimer’s Alliance chaired by Françoise Grossetête, MEP and supported by 30 Members of the European Parliament at the end of 2007,
  • Organised a week long exhibition on Alzheimer’s disease in the European Parliament from 17 to 21 September 2007,
  • Presented the second “Dementia in Europe Yearbook” focusing on the social support systems for people with dementia in 31 European countries at a lunch debate in the European Parliament on 6 November 2007 at which Vladimir Spidla, European Commissioner for Employment, Social Affairs and Equal Opportunities participated,
  • Continued its participation at the meetings of the Management Board of the European Medicines Agency and its Working Party with Patient and Consumer Organisations,
  • Attended the quarterly meetings of the NGOs affiliated to the Council of Europe,
  • Organised a meeting with the government affairs of its national organisations to develop a European public affairs strategy,
  • Welcomed Alzheimer Bulgaria as a provisional member of the organisation and continued to liaise with Alzheimer associations in Estonia, Hungary, Lithuania and Slovenia,
  • Revisited its communication strategy and improved the information exchange with its national member organisations with monthly updates and quarterly e-mail newsletters,
  • Saw its website continue to attract over 55,000 visitors every month,
  • Organised, in collaboration with Alzheimer Portugal, a successful annual conference in Estoril attended by over 300 participants, as well as over 80 speakers from 25 different countries,
  • Started updating the national reports on the legal rights of people with dementia in the Member States of the European Union,
  • Responded to various European policy initiatives including the regulation on advance therapies, the Pharmaceutical Forum consultations on quality criteria and its diabetes information tool,
  • Submitted its response to the consultation of the European Commission on information to patients,
  • Joined the “Alliance for MRI”,
  • Endorsed the policy statement of the European Patients’ Forum on animal research,
  • Adopted a positive position on the use of supernumerary embryos in stem cell research,
  • Called on governments to ratify the Hague Convention for the International Protection of Adults,
  • Developed close working relations with the European Association of Geriatric Psychiatry, the European Alzheimer’s Disease Consortium and the Interdem network,
  • Continued as an active member of the European Patients’ Forum,
  • Set up an expert group on end-of-life care of people with dementia and carried out an extensive literature search on the subject,
  • Carried out an extensive survey on the level of support available for people with dementia and their carers in 31 European countries,
  • Coordinated the Commission funded project “European Collaboration on Dementia – EuroCoDe” resulting in 2007 in
    • a comparative report on social support systems,
    • an overview of guidelines on the diagnosis and treatment of dementia and
    • an inventory of national guidelines on psycho-social interventions,
    • a draft report on the socio-economic impact of dementia,
    • a report on the current understanding of the risk and protective factors in dementia and
    • an overview of European prevalence studies,

Our strategic objectives

The strategic plan of Alzheimer Europe provides a clear mission statement for the activities of the organisation and defines this mission as changing perceptions, policy and practice in order to improve the access by people with dementia and their carers to treatment options and care services.

The strategic plan furthermore defines six key objectives for the organisation: representing the interests of people with dementia and their carers, involving and supporting national Alzheimer associations, improving the information exchange between Alzheimer Europe, its members and European structures, promoting best practice through the development of comparative surveys, developing policy statements and developing strategic partnerships.

Making dementia a European priority and representing the interests of people with dementia and their carers

In 2006, Alzheimer Europe adopted the “Paris Declaration on the political priorities of the Alzheimer movement in Europe”. The document is a call for action to policy makers and was the main tool for Alzheimer Europe in 2007 to lobby European and national policy makers.

In 2007, Alzheimer Europe made great progress in representing the interests of people with dementia and their carers and in strengthening its contacts with different European institutions.

The Paris Declaration continued to gather support and at the end of 2007, 139 European and national policy makers, 48 organisations and 714 individuals has signed the Declaration. The campaign to European policy makers was coordinated with the national member organisations from the respective countries.

A special section on the Dementia in Europe website was dedicated to the Paris Declaration and its supporters.

The European Alzheimer’s Alliance was formally created in 2007 and its Bureau was established in July 2007 with Françoise Grossetête (France) as Chairperson, Brian Crowley (Ireland), Jolanta Dickute (Lithuania) and Joseph Muscat (Malta) as Vice-Chairpersons. The Alliance met on 4 September 2007 in Strasbourg and a second meeting took place in November 2007 together with a lunch debate which Alzheimer Europe organised on that occasion. By the end of 2007, some 30 Members of the European Parliament had given their support to the Alliance.

Alzheimer Europe also organised a week-long exhibition in the European Parliament from 17 to 21 September. During the launch of the exhibition on 18 September, Astrid Lulling, MEP said: “We are confronted with a veritable dementia epidemic, with the numbers of people with Alzheimer’s disease and other forms of dementia, expected to double or treble by 2050. As European policy makers, we support the urgent call of Alzheimer Europe to give dementia a higher priority on the European health and social agenda. We owe it to the 6.1. million Europeans living with Alzheimer’s disease or another form of dementia, as well as their families to act now.”

Françoise Grossetête, MEP (France), chairperson of the newly created European Alzheimer’s Alliance continued: “Every 24 seconds a new case of dementia arises in Europe. We need increased research funding to understand the causes of Alzheimer’s disease and to identify new and better ways of treating and preventing such diseases. If we were able to delay the onset of the disease by only 5 years, we would be able to significantly reduce the numbers of people with dementia and to ensure a better and longer quality of life of our citizens. I intend to dedicate a written declaration to Alzheimer’s disease and already call on my colleagues in the European Parliament to give it their full support. I am delighted to see the initiatives currently undertaken by President Sarkozy in France to increase the funding for Alzheimer’s disease. I will liaise very closely with my colleagues in France to ensure that dementia finds its rightful place in the plans of the French Presidency of the European Union in the second half of 2008.”

During a lunch debate organised by Alzheimer Europe on 6 November 2007, representatives of different European institutions gave a clear signal that the fight against Alzheimer’s disease and other forms of dementia would feature prominently in the plans of the European institutions in 2008.

Welcoming the launch of Alzheimer Europe’s second “Dementia in Europe Yearbook” dedicated to a presentation of the social support provided by governments to people with Alzheimer’s disease in different European countries, Vladimir Spidla, European Commissioner for Employment, Social Affairs and Equal Opportunities congratulated Alzheimer Europe on emphasising the social impact of Alzheimer’s disease and other forms of dementia on people diagnosed, as well as on their families and carers. He stressed the need for improved training of medical and care professionals, as well as of family carers in order to improve the care and support of people with dementia. In particular, he highlighted the importance of using the open method of coordination to exchange best practices in this field and to include the impact of Alzheimer’s disease in future policies for the elderly and health care planning.

Alzheimer Europe also continued to participate in the meetings of the Management Board of the European Medicines Agency as well as the Working Party with Patient and Consumer Organisations.

With the exception of the May meeting, which coincided with an Alzheimer Europe Board meeting, representatives of the organisation attended all the quarterly meetings of the NGOs affiliated to the Council of Europe.

Involving and supporting national Alzheimer associations

In order to better involve national organisations in its campaign, Alzheimer Europe organised a meeting with public affairs and government affairs representatives of its national member organisations. The meeting served to provide the national delegates with in-depth information on the functioning of the European institutions and to involve them in the development of a European public affairs strategy.

Similarly, Alzheimer Europe actively involved its member organisations in the definition of its various policy statements.

In 2007, Alzheimer Europe also continued to liaise with Alzheimer associations in Estonia, Hungary, Lithuania and Slovenia which are currently not members of the organisation. At the Annual General Meeting, a second organisation from Bulgaria was accepted as a provisional member.

Improving the information exchange between AE, its members and European structures

In 2007, Alzheimer Europe revisited its communication strategy and improved the information it provides to its national member organisations on relevant scientific breakthroughs and on interesting policy developments. The organisation continued sending out monthly updates on its activities, as well as quarterly e-mail newsletters.

The Alzheimer Europe website continues to be a useful source of information for people interested in finding out more about Alzheimer Europe and the care and treatment of people with dementia. As in 2006, the number of visitors remained high with over 50,000 persons visiting the Alzheimer Europe website every month.

The Estoril Conference from 9 to 12 May constituted an ideal opportunity to disseminate the political priorities of Alzheimer Europe contained in the Paris Declaration. The three day conference was attended by close to 300 delegates from all across Europe.

Over 80 speakers from 25 different countries shared their knowledge and experience in dementia care, awareness raising and political advocacy.

Entitled “The sound of silence”, the conference was a reminder about the social exclusion which may still result from a diagnosis of dementia and the stigma attached to the disease in various European countries. The conference therefore made an impassioned call to policy makers to give a voice and listen to people with dementia and their carers.

At the closing ceremony of the conference, invited policy makers gave their backing to the Paris Declaration of Alzheimer Europe which was signed by Jose Nunes Liberato, the Chief of Staff of the President of the Portuguese Republic, Carlos Coelho, MEP, Joao Semedo, Member of the Portuguese Parliament, Jorge Coelho, Member of the State Council and Antonio Capucho, Mayor of Caiscais.

Promoting best practice through the development of comparative surveys

In 2007, Alzheimer Europe continued with its survey on the support available for people with dementia and their carers from the different national governments in the European countries covered by the membership of the organisation. This “social Lawnet” constituted a major priority for the organisation. The results of this study also formed an integral part of the organisation’s contribution to the EuroCoDe project.

Alzheimer Europe also continued the work commenced with its Lawnet projects and started updating some of the national reports on the legal rights of people with dementia and their carers.

Developing policy statements

Alzheimer Europe continued to be active on a number of different policy issues.

The organisation continued to respond to various European policy initiatives such as the regulation on advance therapies, the Pharmaceutical Forum consultations on quality criteria for health related information and its Diabetes Information Tool.

In June, Alzheimer Europe submitted its response to the consultation of the European Commission on information to patients. In its contribution, the organisation highlighted the role that patient organisations in general and Alzheimer associations in particular can and should play in providing high quality information to patients and to people with dementia and their carers. The organisation also reiterated its opposition to direct to consumer advertising of medicines to the general public, but stressed that individual patients wanting to access information on medicines from the pharmaceutical industry should have a right to do so.

Within the context of the Portuguese Presidency Roundtable on Health Strategies in Europe, Alzheimer Europe sent a contribution highlighting the importance of including Alzheimer’s disease and other forms of dementia into a European strategy and called upon the European Commission to devise a Dementia Plan and to create a High Level Group on Dementia.

Also, Alzheimer Europe joined the “Alliance for MRI” and called upon European institutions to exclude MRI technologies from the scope of the Physical Agents Directive.

With regard to animal research, Alzheimer Europe endorsed the policy statement of the European Patient’ Forum which called for increased investment into alternatives to the use of animals in research while at the same time recognising the need of their continued use in medical research under strict conditions.

Alzheimer Europe also supported a call initiated by the European Federation of Unpaid Parents and Carers to call on European institutions to carry out a study on non-remunerated work (including that of carers).

But the organisation did not limit itself to policy issues covered by the European institutions. Thus Alzheimer Europe also gave its backing to the Hague Convention for the International Protection of Adults and called on European countries to ratify this legal framework for the mutual recognition of guardianship measures.

Finally, after a thorough consultation of its member organisations, Alzheimer Europe adopted a positive position on the use of supernumerary embryos in stem cell research.

Developing strategic partnerships

The development of strategic partnerships continued in 2007. Thanks to the EuroCoDe project, it was possible for Alzheimer Europe to develop closer ties with organisations such as the European Association of Geriatric Psychiatry, the European Alzheimer’s Disease Consortium and the Interdem network.

As in previous years, Alzheimer Europe continued as an active member of the European Patients’ Forum and its Executive Director served on the Executive of the organisation.

Alzheimer Europe also collaborated with the “Alliance for Health and the Future” in the publication of a report on the intergenerational aspects of dementia entitled: “Dementia in your family” which resulted from a workshop attended by representatives of the two organisations.


Alzheimer Europe Projects

End-of-life care

End-of-life care was identified as a major challenge by all member associations when Alzheimer Europe first developed its previous business plan. Unfortunately, apart from dedicating a workshop to the issue at the AE conference in Paris, little progress was achieved in this area. For this reason, it was proposed to make end-of-life issues a central preoccupation for the organisation in 2007.

As with previous business plan programmes, a working group was set up comprised of representatives of interested Alzheimer associations and other specialists with relevant expertise in the area. This working group met twice in 2007 and advised the Information Officer in developing a report on end-of-life care.

Social Lawnet

A thorough analysis of the social support provided by governments and other authorities was carried out in 2007. Alzheimer Europe gathered information on relevant legislation about the financing and organisation of care of people with dementia.

A survey revealed the level of support available for people with dementia and their carers to access care services (home care, day care, residential care, respite care) but also the direct support received by carers (care allowances and other benefits). Another aspect that was looked at was labour legislation (paid leave or time off to care, consideration of years cared for pension purposes) of relevance to carers of people with dementia.

This allowed a comparison of the situation of people with dementia and their carers in the different European countries and the identification of good practices best suited for the specific needs of people with dementia and their carers.

The information was included in the 2007 Year Book, with comparative information included in the European section, as well as more detailed information in the sections covering the different European countries.

EU Commissioner Vladimir Spidla, the European Parliament Social Affairs Committee Chair Jan Andersson and Portuguese Social Affairs Minister and President of the Council of Ministers José António Vieira da Silva contributed forewords to the 2007 Yearbook.

European Collaboration on Dementia

2007 constituted an important year for the Commission funded project “European Collaboration on Dementia – EuroCoDe”.

The project brings together a wide range of actors and centres such as:

  • Alzheimer’s Disease International, European Alzheimer’s Disease Consortium, European Association of Geriatric Psychiatry, European Federation of Neurological Societies, Interdem, International Association of Gerontology – European Region and North Sea Dementia Research Group in the Steering Committee of the project,
  • University of Stirling and the Alzheimer associations of Finland, Germany, Portugal and Romania in the work package on social support systems,
  • Cochrane Dementia and Cognitive Improvement Group at the University of Oxford, University Medical Centre of Amsterdam, National Institute of Psychiatry (Budapest), the Heinrich-Heine Universität and the University La Sapienza of Rome in the work package on diagnosis and treatment,
  • University Medical Centre St. Radboud, University of Hull, University of Wales (Bangor), Hôpital Broca and Fundación Intras in the work package on psycho-social interventions,
  • European Alzheimer’s Disease Consortium at the University Hospital of Toulouse, Technische Universität München, Wroclaw Medical University and Karolinska Institutet in the work package on prevalence,
  • Karolinska Institutet, London School of Economics, Corvinus University (Budapest), European Health Economics and University of Kuopio in the work package on the socio-economic cost of dementia,
  • Central Institute for Mental Health – Mannheim, University of Maastricht, Alzheimer Scotland – Action on Dementia, University of Debrecen and Karolinska Institutet in the work package on prevention and risk factors.

In 2007, the project resulted in:

  • A comparative report on the level of social support provided to people with dementia and their carers in Europe
  • An overview of International, European and national guidelines on the diagnosis and treatment of dementia
  • An inventory of national guidelines on psycho-social interventions and European indicators on such interventions
  • An overview of European prevalence studies
  • A draft report on the socio-economic impact of dementia
  • A report on the current understanding of the risk and protective factors in dementia.

Alzheimer Europe also developed a web interface which will allow the interactive development of a guideline database and the comparison of different guidelines.

 

 

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Last Updated: mardi 13 octobre 2009

 

 
 

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