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Annual Report 2010

Annual Reports


I took over as Chairperson of Alzheimer Europe in October 2010 and the majority of activities which are described in this Annual Report were undertaken by my predecessor Maurice O’Connell. It is therefore natural that I start my introduction by singling out Maurice and thanking him for his clear leadership over the past six years. The width and depth of activities highlighted in our Annual Report are a clear testament to how much Alzheimer Europe has grown under his direction.

2010 constituted the 20 th anniversary of Alzheimer Europe and we celebrated this during our very successful conference in Luxembourg held under the motto “Facing dementia together”. Our 20 th anniversary was also an ideal opportunity to reflect on our past achievements and the future direction of our organisation. In our membership satisfaction survey, it was encouraging to see the overwhelming vote of confidence we received from our member organisations who rated all our past activities very highly and who gave us their support for the future strategic direction of Alzheimer Europe.

Our policy of involving people with dementia in our activities also made a qualitative jump last year. We were able to make clear recommendations on how to better involve people with dementia in our conferences through the introduction of a bursary system and by ensuring people with dementia are actively involved as speakers. In addition, we involved people with dementia in all working groups set up by the organisation. Last but not least, we were able to reach a decision on how to involve people with dementia in our governance through the development of a European Working Group of People with Dementia and the nomination by that group of a representative on our Board. These decisions will need to be followed up by a statutory reform in 2011, but the way ahead is now clear.

Other highlights in 2010 were our projects in the ethical and legal field. We continued with the activities of the European Dementia Ethics Network and provide a comprehensive overview and discussions of the ethical issues related to assistive technologies. In addition we covered the laws in 30 European countries in the field of legal capacity and proxy decision making. I am proud to say that Alzheimer Europe has become a reference in this important field.

We also continued our campaign to make dementia a European priority and I am truly astounded by the progress we have been able to achieve since the adoption of our Paris Declaration in 2006 which marked the start of our campaign asking for:

  1. the development of dementia strategies,
  2. greater investment in dementia research and
  3. better collaboration and exchange of best practices between European countries.

In all of these three areas, we saw progress. At the end of 2011, there were dementia strategies in place in England, France, the Netherlands, Scotland, Sweden and Wales. Additional countries had started with the development of such strategies, including Belgium, Cyprus, the Czech Republic, Denmark, Finland, Ireland, Italy, Luxembourg and Malta. Thanks to the launch of the Joint Programming Initiative on Neurodegenerative Diseases in 2011 we should see greater support for research on a European level and a better coordination of national research efforts. Last, but not least, ALCOVE, the Joint Action on Dementia will bring together experts and representatives of health ministries to improve early diagnosis , limit the use of anti-psychotics and exchange good practices in the fields of epidemiological research, care and rights of people with dementia. Alzheimer Europe will be happy to collaborate with these initiatives.

We continued to find supporters of our campaign in the European Parliament and many members of the European Alzheimer’s Alliance either supported our European campaign or collaborated with our national member organisations. The lunch debates we organised in the European Parliament were well attended and I would like to thank Dagmar Roth-Behrendt, MEP (Germany) and Nessa Childers, MEP (Ireland) for graciously agreeing to host these events. We highlighted these policy developments in our Dementia in Europe Magazine which has become an essential tool for our continued campaign. The number of policy makers willing to contribute or to be interviewed for our magazines continues to grow from one year to the next

In 2010, we also started our “Value of Knowing” survey. Together with the Harvard School of Public Health and the Alzheimer’s associations in France, Germany, Poland, Spain and the US and thanks to an educational grant by Bayer Healthcare, we developed a survey on the public perceptions on the value of diagnosis, which will also aim at providing a more accurate picture of the public’s familiarity, understanding and knowledge of Alzheimer’s disease .

We were also asked to provide the carers’ and patients’ perspective in PharmaCog and DECIDE, two EU financed research projects. In both these projects, AE will contribute to the ethical discussions and support the dissemination of the research results to the general public and the carer and patient community.

This impressive list of activities would not have been possible without our small but highly dedicated team at Alzheimer Europe. My heartfelt thanks for their contributions go to our Executive Director, Jean Georges and his colleagues Annette Dumas, Julie Fraser, Dianne Gove, Gwladys Guillory and Grazia Tomasini. Similarly, the Board of Alzheimer Europe was instrumental in providing guidance and monitoring the various activities of the organisation. I was particularly happy to see that our meetings continued in the same team spirit as before.

Thanks to the support of the European Commission and the operating grant provided for our activities, the financial year was less challenging than previous years. We are deeply grateful for this recognition and absolutely vital support. In addition, my thanks go to the Luxembourg Alzheimer’s association who seconded Jean Georges to our organisation and provided our rent free offices.

I am deeply grateful for the additional support of our various funders from the public sector (German Ministry of Health), foundations (Fondation Médéric Alzheimer, Fondation Roi Baudouin) and the corporate sector (Bayer Healthcare, Elan, GlaxoSmithKline, Janssen-Cilag, Lilly, Lundbeck, Mazars, Novartis, Nutricia and Pfizer).

Heike von Lützau-Hohlbein

Chairperson


Executive Summary

In 2010, Alzheimer Europe

  • Continued with the development of the European Dementia Ethics Network bringing together European experts in the field of dementia ethics and carried out an in-depth literature review on the ethical implications of the use of assistive technologies in home and institutional settings,
  • Published its position and guidelines on the ethical use of assistive technology for/by people with dementia,
  • Carried out an inventory of national legislations on proxy-decision making and legal capacity,
  • Dedicated its 2010 Dementia in Europe Yearbook to the subject of proxy decision making and legal capacity and included descriptive national reports on the legislation in place in 29 European countries,
  • Carried out a survey of its members on the involvement of people with dementia and approved recommendations on how to better involve people with dementia in activities, projects, conferences, as well as the governance of the organisation,
  • Greatly expanded its coverage of scientific and policy developments in the framework of its Dementia Observatory and included 474 news articles in its monthly e-mail newsletter,
  • Further developed its website which attracted over 160,000, visitors,
  • Organised its 20 th Anniversary Conference in Luxembourg under the theme “Facing dementia together” which was attended by over 300 delegates from 34 countries,
  • Elected a new Board with Heike von Lützau-Hohlbein (Germany) as Chairperson, Iva Holmerová (Czech Republic) as Vice-Chairperson, Maria do Rosário Zincke dos Reis (Portugal) as Honorary Treasurer and Sigurd Sparr (Norway) as Honorary Secretary,
  • Carried out a survey of its members which highlighted a very high degree of satisfaction of its members with the organisation’s past activities and strategic direction.
  • Developed a new strategic plan focusing on the key objectives of making dementia a European priority, supporting policy with facts, basing actions on ethical principles and building a stronger organisation,
  • Welcomed Alzheimer Uniti from Italy as a new provisional member,
  • Continued its collaboration with a number of European networks in the dementia field and supported the development of a European Memory Clinics Association,
  • Collaborated with the European Patients’ Forum on general patient issues such as cross-border health care,
  • Supported the activities of the Alliance for MRI,
  • Strengthened its contacts with AGE, the European Platform for elderly people,
  • Received an operating grant for its activities from the EU public health programme,
  • Continued the development of the European Alzheimer’s Alliance which grew to 50 Members of the European Parliament from 17 Member States,
  • Organised two lunch debates in the European Parliament which were hosted by Dagmar Roth-Behrendt, MEP (Germany) and Nessa Childers, MEP (Ireland),
  • Focused on the development and implementation of national dementia strategies and dedicated a section of its website to the presentation of these strategies,
  • Published two editions of its “Dementia in Europe Magazine” which carried interviews from a variety of national and European policy makers,
  • Produced a special anniversary supplement to its magazine highlighting the key events and achievements of the past 20 years,
  • Closely collaborated with Members of the European Parliament on their own initiative report on a European Alzheimer’s Initiative,
  • Developed contacts with the Joint Programming Initiative on neurodegenerative diseases,
  • Actively contributed to the Spanish Presidency Conference “Mental Health and Well-being of Older People” and to the Belgian Presidency Conference “Improving the quality of life of people with dementia – a challenge for European society”,
  • Continued its collaboration with the European Medicines Agency and participated in expert meetings on familial neurodegenerative diseases and on the use of biomarkers in dementia,
  • Participated as a full partner in the PharmaCog (“Prediction of cognitive properties of new drug candidates for neurodegenerative diseases in early clinical development”) project by taking part in ethical discussions and by disseminating information on the project’s progress,
  • Was invited to join the Decide (“Diagnostic Enhancement of Confidence by an International Distributed Environment”) Consortium where it will represent the views of people with dementia and their carers,
  • Developed a survey on the perceptions and attitudes of the general public in 5 countries (France, Germany, Poland, Spain and the US) about Alzheimer’s disease and their views on the value of a diagnosis thanks to an educational grant by Bayer Healthcare,
  • Published the third edition of the “Guide des aidants”, the French Care Manual,
  • Submitted its recommendations on end-of-life care and the findings of its EuroCoDe project on the socio-economic impact of dementia for peer review resulting in the publication of the recommendations in the Journal of Nutrition, Health & Aging and of the EuroCoDe findings in the International Journal of Geriatric Psychiatry.

Our strategic objectives

European Dementia Ethics Network

The launch phase of the European Dementia Ethics Network was successfully completed in 2009 with the support of the Geman Health Ministry and the organisation had created a European Dementia Ethics Steering Committee and developed a section of its website dedicated to dementia ethics. The implementation phase of the network was successfully started in 2010.

In 2010, the Steering Committee was comprised of the following experts:

  • François Blanchard (France)
  • Alain Franco (France)
  • Jean Georges (Alzheimer Europe)
  • Cees Hertogh (Netherlands)
  • Iva Holmerová (Czech Republic)
  • Sabine Jansen (Germany)
  • Kati Juva (Finland)
  • Mary Marshall (United Kingdom)
  • Celso Pontes (Portugal)
  • Michael Schmieder (Switzerland) and
  • Sigurd Sparr (Norway).

In addition, representatives from the German Ministry of Health and national representatives from Belgium and Luxembourg (Magda Aelvoet, Christian Berringer, Malou Kapgen, Cornelia Reitberger und Matthias von Schwanenflügel) attended and supported the meetings of the ethics network.

The aim of the network was to carry out an in-depth literature search on identified priority areas and develop a report with the findings. In 2010, the network paid particular attention to the ethical implications of the use of assistive technologies in home and institutional settings. A working group was set up comprised of a person with dementia, a carer, representatives of Alzheimer associations and researchers and ethicists with an interest in the field. The working group was made up of the following experts:

  • Dianne Gove (Alzheimer Europe)
  • Inger Hagen (Norway)
  • Sirkkaliissa Heimonen (Finland)
  • Stefánia Kapronczay (Hungary)
  • Heike von Lützau-Hohlbein (Germany)
  • James and Maureen McKillop (United Kingdom - Scotland)
  • Maria McManus (United Kingdom – Northern Ireland)
  • Alistair Niemeijer (Netherlands)
  • Päivi Topo (Finland) and
  • Luiza Spiru (Romania)

Alzheimer Europe organised two meetings of the Dementia Ethics Steering Committee and the working group on assistive technologies.

The work resulted in a report which presents the position of Alzheimer Europe and guidelines on the ethical use of assistive technology for/by people with dementia and proposes an ethical framework for decision making. A brief overview is provided of the three main issues of importance, namely dementia, assistive technology and ethics. This is followed by a discussion of the various ethical issues linked to the use of assistive technology which addresses not only possible disadvantages and ethical dilemmas but also looks at the positive implications of the use of assistive technology and how it can contribute towards respecting certain ethical principles with regard to people with dementia.

Legal Rights Project

In 1998, Alzheimer Europe had dedicated a project to an inventory of legislation affecting people with dementia. The successful Lawnet project resulted in the development of national reports for the 15 Member States of the European Union.

In 2009, Alzheimer Europe decided to embark on a three year project to update the national reports to include all legislative reforms which had been undertaken since the earlier Lawnet project and to develop national reports for those countries that had joined the European Union, as well as other countries covered by the organisation (Iceland, Norway, Switzerland and Turkey).

As a start, the organisation focused on biomedical issues (including consent to treatment, the right to information, advance directives and end-of-life questions) in 2009. In 2010, Alzheimer Europe developed national reports on the issues of proxy decision making (e.g. guardianship measures and continuing powers of attorney) and various forms of legal capacity (e.g. relating to marriage, making a will or a contract, voting, civil liability and criminal responsibility).

Alzheimer Europe was able to count on the active contributions of several legal experts from its member organisations, as well as a number of independent lawyers and legal experts. In addition, Alzheimer Europe received the support of Fondation Médéric Alzheimer for the development of the 29 national reports which were published in the 2010 edition of the organisation’s Dementia in Europe Yearbook.

Involving people with dementia

Alzheimer Europe carried out a survey of its member organisations in which it enquired about how best to involve people with dementia in future activities. Three key recommendations of the Alzheimer Europe Board (the involvement of people with dementia in project working groups, the inclusion of people with dementia as speakers at conferences and the setting up of a bursary system for people with dementia for AE conferences) all received the overwhelming support of the members of Alzheimer Europe and will be formalised in the framework of a forthcoming review of the organisation’s statutes.

However, Alzheimer Europe did not await the conclusions of the survey to fully involve people with dementia in its activities. James McKillop participated in the working group on assistive technologies set up in the framework of the Dementia Ethics Network and was invited as a keynote speaker at the organisation’s Annual Conference in Luxembourg. In order to encourage the participation of people with dementia in AE activities further, a bursary system was created which covered the costs for people with dementia from different European countries to attend the conference. In addition, a section of the organisation’s Dementia in Europe Magazine was dedicated to presenting personal accounts by people with dementia and their carers.

The survey of members also proposed different models for involving people with dementia in the decision making process of the organisation and a majority of members expressed their support for the establishment of a European Advisory Group of people with dementia who would elect a person with dementia to the Board of Alzheimer Europe. The terms of reference of this advisory group and the election procedure will be further clarified in 2011.

European Dementia Observatory

In the past years, Alzheimer Europe has greatly improved the information it provides to its members and external stakeholders on key developments. As a long-term objective, Alzheimer Europe would like to set up a European Dementia Observatory where all relevant developments in the dementia field would be monitored and reported on.

In 2010, the monthly e-mail newsletters contained information on the latest activities of Alzheimer Europe and those of the European Alzheimer’s Alliance and its member organisations, as well as information on interesting policy initiatives both on a national and European level. Alzheimer Europe also covered research developments in its monthly newsletter.

A total of 474 articles were featured in 2010 in Alzheimer Europe’s monthly e-mail newsletters and these articles can be broken down as follows:

Subject

Number of Articles

Activities and projects of Alzheimer Europe

28

European policy developments in the field of dementia

54

National policy developments

27

Activities and projects of AE member organisations

93

Scientific developments

202

Dementia in Society

35

New resources and publications

35

The information was also included on the Alzheimer Europe website which continued to receive a significant number of visitors throughout the year.

Month

Visitors

January 2010

12,003

February 2010

12,723

March 2010

15,419

April 2010

13,071

May 2010

12,645

June 2010

12,757

July 2010

12,114

August 2010

12,623

September 2010

15,996

October 2010

16,364

November 2010

16,068

December 2010

12,459

Total:

164,242

20 th Alzheimer Europe Conference in Luxembourg

In 2010, Alzheimer Europe celebrated it 20 th anniversary and therefore chose to organise its Annual Conference in Luxembourg, where the organisation’s secretariat has been established since 1996.

Under the theme “Facing dementia together”, Alzheimer Europe and Association Luxembourg Alzheimer focused on the importance of partnerships which are necessary to improve the quality of life of people with dementia and their carers.

The conference was held under the Patronage of H.R.H. the Grand Duchess of Luxembourg and a number of high level national (Minister of Health Mars di Bartolomeo, Minister for Family and Integration Marie-Josée Jacobs, Minister for the Economy Jeannot Krecké) and European representatives (European Commission Director for Public Health Andrzej Rys) attended the conference.

Over 300 delegates from 34 countries attended the conference and listened to the keynote speakers who came from a variety of backgrounds and included:

  • Philippe Amouyel (France)
  • Dieter Ferring (Luxembourg)
  • Dianne Gove (Alzheimer Europe)
  • Iva Holmerová (Czech Republic)
  • Julian Hughes (United Kingdom)
  • Maria Isaac (European Medicines Agency)
  • Christina Kuhn (Germany)
  • Heike von Lützau-Hohlbein (Germany)
  • Gráinne McGettrick (Ireland)
  • James and Maureen McKillop (United Kingdom-Scotland)
  • Antoni Montserrat (European Commission)
  • Kaisu Pitkälä (Finland)
  • Gerrit Rauws (Belgium)
  • Bengt Winblad (Sweden)

A total of 97 presentations were made during the conference with parallel sessions being dedicated to a wide variety of subjects, such as:

  • Assistive technologies and design
  • Education and training
  • Innovative care services and approaches
  • International dimension of dementia
  • National dementia strategies
  • Non-pharmacological approaches
  • Nursing home care
  • Organisation and financing of care
  • Perceptions of dementia
  • Relationships, communication and sexuality
  • Rights and ethics
  • Screening, diagnosing and treating dementia
  • Successful campaigning
  • Supporting and involving people with dementia.

Alzheimer Europe asked participants to evaluate different aspects of the conference and a total of 57 delegates returned the evaluation forms. The different plenary sessions were all judged highly with between 68.75% and 84.09% of delegates rating the four plenary sessions as “good” or “very good” and only between 2.04% and 8.33% rating the plenary sessions as “poor”. Similarly, 78.18% of delegates felt that the choice of topics for parallel sessions had been “good” or “very good”. Of the various aspects of the conference, the time left for discussion amongst conference delegates was the only area rated as “poor” by 26.79% of delegates and Alzheimer Europe will ensure the possibilities for dialogue will be enhanced at future conferences. Asked whether delegates would recommend an Alzheimer Europe Conference to friends and colleagues, 90.57% replied positively and 9.43% negatively.

The Annual General Meeting of Alzheimer Europe also took place in the framework of the 20 th Alzheimer Europe Conference in Luxembourg. At the meeting, the member organisations adopted the annual report and financial accounts and approved the work plan and budget for 2011. In addition, the members elected a new Board:

  • Heike von Lützau-Hohlbein (Germany) as Chairperson
  • Iva Holmerová (Czech Republic) as Vice-Chairperson
  • Maria do Rosário Zincke dos Reis (Portugal) as Honorary Treasurer
  • Sigurd Sparr (Norway) as Honorary Secretary
  • Sabine Henry (Belgium), Liane Kadusch-Roth (Luxembourg), Patrick Maugard (France), Maurice O’Connell (Ireland), Sirpa Pietikäinen (Finland), Alicja Sadowska (Poland), Charles Scerri (Malta) and Henry Simmons (United Kingdom-Scotland) as members of the Board

Membership development

After the acceptance of Alzheimer associations from Croatia, Estonia and Slovenia as members in 2009, Alzheimer Europe now covers the vast majority of Member States of the European Union (with the exception of Hungary, Latvia and Lithuania).

At the same time, Alzheimer Europe established informal contacts with associations in Hungary, Latvia and Lithuania and involved them where possible in its projects and activities.

In 2010, Alzheimer Europe also welcomed the Italian association “Alzheimer Uniti” as a provisional member.

Strategic partnerships

As in previous years, Alzheimer Europe continued its collaboration with a number of other key European organisations with an interest in dementia, such as the European Alzheimer’s Disease Consortium, the European Federation of Neurological Societies, the European Association of Geriatric Psychiatry, the European Union Geriatric Medicine Society, the Interdem network, the European Association for Palliative Care and the International Association of Gerontology – European Region. Alzheimer Europe also collaborated in the development and setting up of the European Memory Clinics Association (EMCA).

As a member of the European Patients’ Forum (EPF), Alzheimer Europe contributed to European discussions on general health and patient related issues such as cross-border health-care or the legislation on information to patients. Alzheimer Europe also participated in an EPF seminar on health technology assessment and EPF’s General Assembly.

Alzheimer Europe also continued its involvement with the Alliance for MRI which was created to address the concerns raised by the impact of a European Directive on the use of MRI for clinical and research purposes and participated in a meeting of the Alliance with members of the Cabinet of EU Health Commissioner John Dalli. The campaign of the Alliance contributed to the European Commission re-examining the directive.

In 2010, Alzheimer Europe also strengthened the contacts with AGE, the European Platform for elderly people with the two organisations collaborating on the preparatory meetings of the Presidency Conferences on Mental Health and Dementia and exchanging information on their respective activities.

Fundraising

In 2010, Alzheimer Europe was able to count on the support of the European Commission which provided an operating grant for Alzheimer Europe’s activities in the framework of the EU public health programme.

In addition, Alzheimer Europe was able to rely on a number of additional income categories, such as membership dues and other contributions from member organisations, direct payments from individuals such as conference registration fees and publication sales, support from foundations and from corporate sponsors in line with the organisation’s guidelines.

Alzheimer Europe continues to disclose all sources of funding in a transparent fashion in line with the guidelines for organisations accredited by the European Medicines Agency.

European Public Affairs Activities

European Alzheimer’s Alliance

Alzheimer Europe continued its close contacts with Members of the European Parliament. The number of MEPs who joined the European Alzheimer’s Alliance grew from 41 to 50 by the end of 2010 representing 17 Member States of the European Union and all of the seven political groups in the European Parliament.

In 2010, Alzheimer Europe organised two successful lunch debates in the European Parliament.

  • On 22 June, Dagmar Roth-Behrendt, MEP (Germany) hosted a lunch debate entitled “Alzheimer’s disease and dementia as a national priority: contrasting approaches by France and the UK” at which Florence Lustman, coordinator of the French Alzheimer’s Plan and Andrew Ketteringham, Director of External Affairs of the UK Alzheimer’s Society presented the dementia strategies of their respective countries.
  • Nessa Childers, MEP (Ireland) hosted a lunch debate on 7 December which was dedicated to the Joint Programming Initiative on research in neurodegenerative diseases at which Pieter Jelle Visser, a Dutch researcher and member of the Joint Programming Initiative, as well as Elmar Nimmesgern from the Research Directorate General of the European Commission presented the progress of this initiative.

A number of Alliance members also supported Alzheimer Europe’s work by contributing to the organisation’s publications such as the Dementia in Europe magazine. This was the case of the Alliance Chair Françoise Grossetête (France) and Vice-Chairs Frieda Brepoels (Belgium), Brian Crowley (Ireland) and Dagma Roth-Behrendt (Germany). In addition, Sirpa Pietikäinen (Finland) and Astrid Lulling (Luxembourg) gave interviews on the key challenges faced by people with dementia and their carers in their countries.

Policy Watch and “Dementia in Europe Magazine”

A clear focus of Alzheimer Europe’s work in 2010 was on European and national policy developments in the field of Alzheimer’s disease and other related dementias.

Alzheimer Europe dedicated a new section of its website to national dementia plans and included information on existing dementia strategies or Alzheimer plans in countries such as France, the Netherlands, Norway and the United Kingdom (England and Scotland), as well as information on campaigns and plans in countries such as Cyprus, Finland, Malta and Portugal.

Alzheimer Europe published two editions of the “Dementia in Europe Magazine” which included a variety of articles on policy developments, as well as interviews with European and national policy makers including EU Health Commissioner John Dalli. Alzheimer Europe also included detailed information on its various projects and meetings, such as the European Parliament lunch debates and Annual Conference of the organisation. In addition, the magazine featured a section on “Living with dementia” where people with dementia and carers provided insightful accounts of their own experiences of dementia.

As part of its 20 th anniversary celebration, Alzheimer Europe published a special supplement to the magazine which highlighted a number of key events, meetings, projects and achievements of the past 20 years.

Making dementia a European priority

European Alzheimer’s Initiative

Following the adoption by the European Commission of a European initiative on Alzheimer’s disease and other dementias in 2009, the European Parliament decided to write an own-initiative report on the initiative and appointed Marisa Marias, MEP (Portugal) as rapporteur of this report.

This provided an ideal opportunity for Alzheimer Europe to meet with Members of the European Parliament to present the views of the organisation.

Alzheimer Europe prepared a position paper which was supportive of the Commission’s focus on four key areas:

  • Public health: prevention and early diagnosis of dementia,
  • Research: enhanced cooperation between Member States and improved epidemiological data collection,
  • Social affairs: exchange of best practices on early interventions and social care,
  • Legal issues: Patient rights and autonomy.

Alzheimer Europe was invited to present its views at a hearing organised by the Public Health Committee of the European Parliament in October 2010. Thanks to the support of the active Members of the European Alzheimer’s Alliance, the report adopted by the Committee in December 2010 took account of a number of amendments suggested by Alzheimer Europe.

Joint Programming on Alzheimer’s disease

Alzheimer Europe welcomed the launch of the Joint Programming Initiative on Alzheimer’s disease and neurodegenerative diseases in 2010. The organisation was able to involve Professor Philippe Amouyel, the chair of the Management Board in a number of its activities and to establish close contacts with the initiative.

In particular, Philippe Amouyel gave an in-depth interview on the initiative to Alzheimer Europe’s Dementia in Europe Magazine and provided a progress report at the 20 th Alzheimer Europe Conference in Luxembourg.

One of Alzheimer Europe’s lunch debates in the European Parliament was also dedicated to a presentation of the plans of the Joint Programming Initiative in 2011.

EU Presidency activities

As in previous years, Alzheimer Europe was successful in collaborating with the Presidencies of the European Union.

Alzheimer Europe was invited on the preparatory committee for a Spanish Presidency Conference on Mental Health of elderly people which was organised in the framework of the European Pact for Mental Health. In addition, AE took an active part in the conference on 28 and 29 June in Madrid, Spain and was asked to chair the workshop on informal carers.

Alzheimer Europe also collaborated with the Belgian Presidency and participated in the preparatory meetings for the Belgian Presidency Conference on the societal aspects of dementia. To support the preparations, Alzheimer Europe partnered in the development of a survey aimed at identifying examples of best practices with regard to the involvement of people with dementia as citizens and ensured the participation of national Alzheimer associations in the data collection.

Representatives of the Alzheimer Europe Board and member organisations took an active part in the Belgian Presidency Conference entitled “Improving the quality of life of people with dementia. A challenge for European society” and organised on 25 and 26 November 2010.

European Medicines Agency

Alzheimer Europe continued its collaboration with the European Medicines Agency in 2010. As an accredited patient organisation, Alzheimer Europe was able to participate in a stakeholder meeting on new dementia developments organised on 11 January 2010 at which experts discussed the latest developments as to potential biomarkers for the diagnosis of Alzheimer’s disease and the assessment of disease progression.

An additional expert meeting on familial neurodegenerative diseases took place on 8 November and was also attended by Alzheimer Europe.

Finally, as in previous years, Alzheimer Europe staff took place in the plenary meeting for all patient organisations accredited at the European Medicines Agency and the training session on the review of product information.

Other activities and projects

PharmaCog

PharmaCog, short for “Prediction of cognitive properties of new drug candidates for neurodegenerative diseases in early clinical development” is a project which started its work on 1 January 2010 thanks to significant funding from the Innovative Medicines Initiative. The aims of the project are to:

  • Validate the tools necessary to streamline Alzheimer’s disease drug discovery,
  • Set the standard for European drug discovery providing optimised and validated protocols,
  • Provide the infrastructure to sustain world class drug discovery in Europe and
  • Disseminate the results obtained from health professionals to patients.

Alzheimer Europe represents the interests of people with dementia and their carers in this consortium and helps with the dissemination of the research results to a lay audience. In 2010, the organisation developed a section of its Internet site dedicated to the PharmaCog project, provided progress reports of the project in its newsletter and magazine and organised a symposium with project leaders in the framework of the Annual Conference in Luxembourg.

DECIDE project

In 2010, Alzheimer Europe was also invited to join the consortium of a project funded through the Seventh Framework Programme of the European Union (FP7). The aim of DECIDE (Diagnostic Enhancement of Confidence by an International Distributed Environment) is to design, implement, and validate a GRID-based e-Infrastructure. Over this e-Infrastructure, a service will be provided for the computer-aided extraction of diagnostic markers for Alzheimer's disease and schizophrenia from medical images.

The project started on 1 September 2010 and Alzheimer Europe will help with the dissemination of research results to the patient and carer community.

Value of diagnosis

With the support of an educational grant of €310,000 from Bayer Healthcare, Alzheimer Europe developed a survey to investigate the differences in public perception and awareness of Alzheimer’s disease in a number of European countries (France, Germany, Poland and Spain) and to identify the views of the general public on the value of a diagnosis of Alzheimer’s disease.

In 2010, Alzheimer Europe set up a working group with representatives of the US Alzheimer’s association and Alzheimer organisations from the participating European countries, as well as researchers and policy makers with an interest in this field. The survey was agreed upon by the end of 2010 and the field work of the survey will start in 2011.

AE Publications

In collaboration with France Alzheimer, Alzheimer Europe published a revised edition of the successful “Guide des aidants”. For this third edition of the French version of the Care Manual, 5,000 copies were published which will be distributed through the network of the French Alzheimer association and its local member organisations.

The key recommendations of Alzheimer Europe’s project on end-of-life care were published in the Journal of Nutrition, Health & Aging.

The findings of the working group on the cost of dementia of the Commission financed “European Collaboration on Dementia – EuroCoDe” project were published in the peer reviewed journal, the International Journal of Geriatric Psychiatry.


Meetings attended by AE representatives

Date

Meeting

Location

7 January

Meeting with Alzheimer’s Society

London, United Kingdom

11 January

EMEA Workshop on “New developments in dementia of Alzheimer’s type”

London, United Kingdom

12 January

Health Consumer Powerhouse meeting “How to cure the EU Patient Information Gap”

Brussels, Belgium

12 January

Hearing of Commissioner-designate Viviane Reding

Brussels, Belgium

18 January

Meeting with Association Luxembourg Alzheimer

Luxembourg, Luxembourg

19 January

Launch of RightTimePlaceCare project

Brussels, Belgium

20 January

Meeting with EFPIA representatives

Brussels, Belgium

4 February

EFPIA think tank

Brussels, Belgium

18 February

Meeting with Association Luxembourg Alzheimer and Université de Luxembourg

Luxembourg, Luxembourg

23 February

European Parliament Carers Interest Group

Brussels, Belgium

25 February

Meeting with Foundation Compassion Alzheimer Bulgaria

Luxembourg, Luxembourg

2 March

Family Platform Info Day in European Parliament

Brussels, Belgium

3 March

Eurofound Seminar “Company strategies in Europe: Flexibility and social dialogue”

Brussels, Belgium

8 March

AE Working group on the ethical implications of assistive technologies

Brussels, Belgium

9 March

Steering Committee of the European Dementia Ethics Network

Brussels, Belgium

10-12 March

Alzheimer’s Disease International Conference

Thessaloniki, Greece

23 March

Meeting with Novartis

Geneva, Switzerland

31 March

Meeting with International Longevity Centre

Brussels, Belgium

7 April

Meeting with Luxembourg-Congrès

Luxembourg, Luxembourg

12 April

Meeting with Antoniya Parvanova, MEP (Bulgaria)

Brussels, Belgium

26 April

AE Board meeting

Brussels, Belgium

27 April

EFPIA think tank

Brussels, Belgium

27 April

European Parliament Employment and Social Affairs Committee

Brussels, Belgium

27-28 April

EFGCP Workshop “Ethical challenges in clinical research at both end of life”

Antwerp, Belgium

28 April

European Parliament Mental Health Interest Group

Brussels, Belgium

28 April

European Parliament Industry Committee

Brussels, Belgium

28 April

European Parliament Internal Market Committee

Brussels, Belgium

4 May

Belgian Presidency Expert meeting on dementia

Brussels, Belgium

4 May

European Parliament Environment and Health Committee

Brussels, Belgium

5 May

Recognition Meeting

Berlin, Germany

6 May

Patients’ Rights Day in European Parliament

Brussels, Belgium

11 May

STOA Meeting on Ageing Research

Brussels, Belgium

13 May

Meeting with Pfizer

Luxembourg, Luxembourg

18 May

European Patients’ Forum Seminar on Health Technology Assessment

Brussels, Belgium

19 May

General Assembly of European Patients’ Forum

Brussels, Belgium

25 May

Meeting with European Patients’ Forum

Brussels, Belgium

3 June

Meeting with Elena Oana Antonescu, MEP (Romania)

Brussels, Belgium

3 June

Meeting with Emilia Romana, European Parliament

Brussels, Belgium

8-9 June

100 Year Anniversary Meeting of Karolinska Institutet

Stockholm, Sweden

11 June

Meeting with Marisa Matias, MEP (Portugal)

Brussels, Belgium

12 June

European Memory Clinics Association

Basel, Switzerland

21 June

AE Board

Brussels, Belgium

22 June

European Parliament lunch-debate: “Alzheimer’s disease and dementia as a national priority”

Brussels, Belgium

22 June

European Parliament Women’s Committee

Brussels, Belgium

23 June

University of Maastricht debate on health literacy

Brussels, Belgium

28-29 June

Spanish Presidency Conference on the mental health of elderly people

Madrid, Spain

7 July

European Commission seminar on Ageing and Women’s Health

Brussels, Belgium

8 July

Meeting with Alliance for MRI and Cabinet of EU Health Commissioner

Brussels, Belgium

1 September

Parliament Magazine reception

Brussels, Belgium

3 September

Meeting with AGE

Brussels, Belgium

6 September

Strategy meeting of AE Board

Brussels, Belgium

14 September

Meeting with Servier

Brussels, Belgium

16 September

Annual Conference on Ligue Alzheimer

Louvain-la-Neuve, Belgium

22 September

AE Working group on the ethical implications of assistive technologies

Berlin, Germany

22 September

Steering Committee of the European Dementia Ethics Network

Berlin, Germany

22 September

EFPIA Think tank

Brussels, Belgium

28 September

European Parliament Carers Interest Group

Brussels, Belgium

30 September

AE Board meeting

Luxembourg, Luxembourg

30 September

AE Annual General Meeting

Luxembourg, Luxembourg

1 October

Meeting with Nutricia

Luxembourg, Luxembourg

1-2 October

20 th Alzheimer Europe Conference

Luxembourg, Luxembourg

5-9 October

European Health Forum “Health in Europe, ready for the future”

Hof Badgastein, Austria

10 October

Alzheimer Café Day of Ligue Alzheimer

Brussels, Belgium

11 October

European Commission workshop “Healthy ageing, adaptation of health systems”

Brussels, Belgium

13 October

Meeting with Servier

Brussels, Belgium

13 October

Meeting with Bristol-Myers-Squibb

Brussels, Belgium

13 October

Meeting with Alzheimer’s Society (UK)

Brussels, Belgium

20 October

Meeting with office of Marina Yannakoudakis, MEP (United Kingdom)

Brussels, Belgium

25 October

Meeting with office of Nessa Childers, MEP (Ireland)

Brussels, Belgium

26 October

Meeting with Lilly

Brussels, Belgium

27 October

United Nations Human Rights Office Seminar on “Human rights of persons in institutional care”

Brussels, Belgium

28 October

European Parliament Committee on Public Health Hearing on Alzheimer’s disease

Brussels, Belgium

28 October

Meeting with office of Glenys Willmott, MEP (United Kingdom)

Brussels, Belgium

3-4 November

Steering Committee of “Value of Diagnosis” project

London, United Kingdom

8 November

EMEA Expert meeting on familial neuro-degenerative diseases

London, United Kingdom

15 November

Meeting with Pfizer

Brussels, Belgium

16 November

International Longevity Centre meeting in European Parliament

Brussels, Belgium

17 November

AGE Conference on elderly abuse

Brussels, Belgium

18 November

EFPIA Think tank

Brussels, Belgium

24 November

Meeting with AGE

Brussels, Belgium

25-26 November

EU Presidency Conference “Improving the quality of life of people with dementia: A challenge for European society”

Brussels, Belgium

29-30 November

EMEA meetings with patient organisations

London, United Kingdom

30 November

European Parliament Environment and Public Health Committee

Brussels, Belgium

30 November

Council of Europe seminar on decision making regarding medical treatment in end-of-life situations

Strasbourg, France

6 December

AE Board meeting

Brussels, Belgium

7 December

European Parliament lunch-debate: “The Joint Programming of Research in neurodegenerative diseases”

Brussels, Belgium

8 December

Meeting with Sanofi-Aventis

Brussels, Belgium

8-11 December

APFADA Conference: Alzheimer’s disease: towards an integrated policy”

Lisbon, Portugal

  

 

 
 

Last Updated: lundi 12 novembre 2012

 

 
 

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