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Annual Report 2011

Annual Reports


As I look back on my first two years as Chairperson of Alzheimer Europe, I have to admit to being proud about the impressive list of our achievements.

When we adopted a new strategic plan in 2011, we did so after a thorough satisfaction survey amongst our member organisations. It was heartening to see that members overwhelmingly endorsed the activities carried out in previous years and gave their full backing to building on those priorities over the next five-year period.

I am particularly impressed with the clear commitment our members have given to the need to improve the ways in which we involve people with dementia in our activities. The adoption of our policy on including people with dementia in working groups, projects and policy work and the development of a bursary system for people with dementia for our annual conferences constitute important milestones in becoming a more inclusive organisation. The development of a European Working Group of People with Dementia and the decision to invite the Chairperson of this group to attend our Board meetings with full voting rights are particularly exciting new initiatives.

Thanks to our European Dementia Ethics Network, we are now recognised as a leader in Europe when it comes to ethical and legal issues in the dementia field. Last year’s publication on the ethical issues of dementia research and our yearbook with the national reports on restrictions of freedom are important additions to our growing list of publications in this area.

I am also confident that we are getting closer to our stated aim of establishing a European Dementia Observatory as we have been able to cover an increasing range of scientific and policy developments in our e-mail newsletter and our magazine.

Our policy focus is similarly paying off dividends and the membership of our European Alzheimer’s Alliance continues to increase. At the end of last year, we counted 58 Members of the European Parliament from 21 European countries as active participants. I particularly enjoyed the meetings we organised with public affairs representatives from our member organisations which allowed us to exchange information on campaigning and lobbying activities on a national level, but also to jointly develop strategies on how to ensure dementia becomes a European and national priority.

Our Annual Conferences have become true networking opportunities and over the past few years, we have been able to steadily increase the number of participants with last year’s conference in Warsaw, held under the motto “European solidarity without borders” attracting close to 500 participants from 44 countries.

Alzheimer Europe has also become a recognised partner for European funded research projects and collaborations. In 2011, we were involved as full partners in both the PharmaCog and DECIDE projects where we supported the dissemination activities and took part in the discussion of ethical issues. More and more project coordinators acknowledge the importance of involving carers’ and patients’ organisations and have therefore contacted us when developing applications for funding.

Although the list of achievements is already quite impressive, I want to add another undoubted highlight of our activities last year: the Value of knowing survey which we conducted together with the Harvard School of Public Health and the Alzheimer associations in Germany, France, Poland, Spain and the US thanks to an educational grant provided by Bayer AG. This survey gave us important information on the general public’s perceptions and knowledge of Alzheimer’s disease, the fear caused by the disease and the willingness and interest of people to find out more about a possible diagnosis or their likelihood of developing the disease in the future. The media interest generated by the survey publication was tremendous and I was delighted to see the results covered and commented by such prestigious publications and news agencies as Reuters, CNN or Spiegel in Germany.

When presenting and discussing this list of successful projects and initiatives with policy makers, I am always struck that they completely overestimate the size of the organisation. The list of achievements is impressive all on its own; the fact that these projects have been carried out by a small team of five permanent staff and two consultants is testimony to their dedication to our common cause. My heartfelt thanks go to our Executive Director, Jean Georges and his team comprised of Alex Teligadas, Annette Dumas, Dianne Gove, Julie Fraser, Grazia Tomasini and Gwladys Guillory.

I also want to thank the other members of the Board who have aptly supported me at our regular meetings to ensure that our activities and finances are in line with the work plan and budget approved by our membership. Their advice and input were essential for an accurate monitoring and evaluation of our programmes.

Finally, none of our activities would have been possible without adequate financial support. The operating grant provided by the European Commission for a second year made it easier to carry out our core activities. Also, as in previous years, the Luxembourg Alzheimer’s Association seconded the Executive Director to work on behalf of Alzheimer Europe and provided us with rent free offices. In addition, we were able to count on project funding from a number of foundations and corporate sponsors which we thank in the financial report of this publication.

I hope you will share my enthusiasm for Alzheimer Europe and its achievements when reading the rest of this Annual Report.

Heike von Lützau-Hohlbein

Chairperson


Executive Summary

In 2011, Alzheimer Europe

  • Received an operating grant under the EU public health programme to finance its core activities,
  • 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 aspects of dementia research (informed consent, representation of people unable to consent, placebo research, genetic testing),
  • Published a report with its position and recommendations on the ethical issues of dementia research,
  • Carried out an inventory of national legislation on restrictions of freedom (involuntary internment, coercive measures, mistreatment and abuse and driving),
  • Dedicated its 2011 Dementia in Europe Yearbook to the subject of restrictions of freedom and included descriptive national reports on the legislation in place in 32 European countries,
  • Continued to cover scientific and policy developments in the framework of its European Dementia Observatory and included a total of 443 news articles in its monthly e-mail newsletter,
  • Expanded its website, which increased the numbers of visitors by over 32% in comparison to 2010 and brought total visitors to 217,471,
  • Implemented the new policy of involving people with dementia by including people with dementia in the working group on the ethical aspects of dementia research, by including people with dementia as keynote speakers at the AE Conference in Warsaw and by creating a bursary system for people with dementia attending the AE Conference,
  • Adopted changes to its Statutes to allow the setting up of a European working group of people with dementia whose chairperson will be an “ex officio” member of the Alzheimer Europe Board,
  • Organised its 21st Annual Conference in Warsaw under the theme “European Solidarity without borders” which was attended by 472 participants from 44 countries,
  • Approved a new strategic plan for the period 2011-2015,
  • Welcomed the Jersey Alzheimer’s Association as new full member and Compassion Alzheimer Bulgaria as a new provisional member,
  • Developed closer ties with ALCOVE, the Joint Action on Dementia and dedicated a lunch debate in the European Parliament to a presentation of ALCOVE’s aims and objectives,
  • Collaborated with the Joint Programming Initiative on Neurodegeneration and participated in the stakeholder consultation for the development of the initiative’s Strategic Research Agenda,
  • Actively participated in the workshops organised by the European Commission for the establishment of the European Innovation Partnership on Active and Healthy Ageing,
  • Collaborated with the European Medicines Agency as an accredited patient organisation,
  • Continued as an active member of the European Patients’ Forum,
  • Developed closer ties with AGE, the European Platform for elderly people,
  • Contributed to discussions on regionalisation with Alzheimer’s Disease International,
  • Networked with other European dementia networks,
  • Increased the membership of the European Alzheimer’s Alliance to 58 Members of the European Parliament from 21 Member States and all seven political groups,
  • Organised three lunch debates in the European Parliament which were hosted by Marina Yannakoudakis, MEP (United Kingdom), Sirpa Pietikäinen, MEP (Finland) and Frieda Brepeols, MEP (Belgium),
  • Focused on the development and implementation of national dementia strategies,
  • Published three editions of its “Dementia in Europe Magazine” which carried interview from a variety of national and European policy makers,
  • Dedicated a special conference supplement of the magazine to the situation of people with dementia in Poland,
  • Carried out a survey on the perceptions and attitudes of the general public in 5 countries (France, Germany, Poland, Spain and the US) and their views on the value of a diagnosis in collaboration with the Harvard School of Public Health thanks to an educational grant by Bayer Healthcare,
  • Presented the findings of the survey on the “Value of Knowing” at the Alzheimer’s Association International Conference in Paris, the Conference of the International Psychogeriatrics Association in The Hague, the Alzheimer Europe Conference in Warsaw and one of the lunch debates organised in the European Parliament,
  • Generated great media interest in the key findings of the survey which showed AD as a major concern, high personal experience of Alzheimer’s disease and a high willingness to confront the disease by getting a diagnosis,
  • Continued its involvement in the PharmaCog and DECIDE projects by disseminating research results to the general public and by dedicating a workshop on these projects at the Alzheimer Europe Conference in Warsaw.

Core Activities

In 2011, Alzheimer Europe received the support of the European Commission. The following core activities of the organisation were funded thanks to an operating grant to Alzheimer Europe in the framework of the Public Health Programme.

European Dementia Ethics Network

The work on dementia ethics started in 2009 and had the aim of collecting and disseminating ethical positions and recommendations, to provide in-depth coverage of specific ethical dilemmas and to develop, where possible, consensual positions and recommendations.

Building on the work carried out in 2010, the focus of the 2011 activities was on developing a report on the ethical issues of dementia research (informed consent, representation of people unable to consent, placebo research, genetic testing).

An in-depth literature review was carried out with the aim of providing an objective analysis of the literature relating to the ethics of dementia research. In order to ensure that lay people were familiar with the issues discussed in the report, for each section, background information was provided for each topic addressed (e.g. what do we mean by ethics, what is research, what do clinical trials involve etc.). This was followed by a balanced argument of various positions regarding the ethical issues linked to that topic and finally, we proposed our position regarding various issues.

At the end of the report, a few useful annexes were included. The first was a sample consent form which could be adapted to the needs of a particular study. Secondly, we included a list of issues to consider when drafting a participant information sheet and finally, we included a list of issues to be considered by researchers and ethical committees when designing or evaluating a research proposal.

Alzheimer Europe organised two meetings of the working group on the ethics of dementia research. These were attended by all the members of the working group as well as two members of the Steering Committee, Iva Holmerová (Czech Republic) and Sabine Jansen (Germany).

The members of the working group were as follows:

  • Dr Peter Annas, Senior Research Scientist, PhD. and AstraZeneca’s representative in the PharmaCog project (and co-leader of the Ethics work package in the same project).
  • Ms Angela Clayton-Turner, volunteer, carer and involved in selecting, monitoring and disseminating research for the Alzheimer’s Society and in ethical procedures for brain donations for research. She is also a lay member of her local Research Ethics Committee.
  • Dr Thomas Frühwald, Senior physician of the Department of Acute Geriatry of the Hietzing Hospital in Vienna, Austria. Committee member of the Geriatric Medicine Section of the European Union of Medical Specialists, Board member (Vice President) of the Austrian Society of Geriatrics and Gerontology.
  • Ms Dianne Gove, Information Officer at Alzheimer Europe, Luxembourg.
  • Dr Fabrice Gzil, Head of Social Studies Department, Fondation Médéric Alzheimer in Paris, France. He recently produced ethical guidelines for researchers interested in obtaining funding for social sciences research.
  • Associate Professor Iva Holmerová, Charles University, Centre of Gerontology in Prague, Czech Republic.
  • Ms Sabine Jansen, Executive Director of the Deutsche Alzheimer Gesellschaft e.V. (the German Alzheimer Society).
  • Mr James McKillop (MBE) and Mrs Maureen McKillop. James has taken part in several research studies and has been a member of several working groups within Alzheimer Europe (including the last ethics project). He is a founding member of the Scottish Dementia Working Group. James has dementia and Maureen is his wife and carer.
  • Dr Carlo Petrini, Head of the Bioethics Unit of the National Institute of Health in Rome, Italy.
  • Dr Rasa Ruseckiene, Consultant in adult and old age psychiatry, therapist, work experience in UK psychiatric hospitals, involved in project to promote psychiatric services in Lithuania.
  • Prof. Sandro Sorbi, Professor of Neurology, Department of Neurological Science and Psychiatry at the University of Florence, Italy. He is responsible for coordinating the new EFNS guidelines on dementia with a section on the ethics of research.

The members of the Steering Committee, which was formed in 2010, were also involved in the development of the report and the recommendations. They were sent copies of the various drafts of the report of the ethics of dementia research for comment. Some, in addition, attended one of the meetings of the working group, provided constructive feedback to the text and proposed additional relevant literature to consider. In 2011, the Steering Committee was comprised of the following experts:

  • Christian Berringer (German Ministry of Health)
  • François Blanchard (France)
  • Alain Franco (France)
  • Jean Georges (Alzheimer Europe)
  • Cees Hertogh (Netherlands)
  • Iva Holmerová (Czech Republic)
  • Sabine Jansen (Germany)
  • Kati Juva (Finland)
  • Malou Kapgen (Luxembourg)
  • Mary Marshall (United Kingdom)
  • Celso Pontes (Portugal)
  • Cornelia Reitberger (German Ministry of Health)
  • Sigurd Sparr (Norway).

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).

In 2009 and 2010, Alzheimer Europe therefore completely reviewed, updated and, where necessary, drafted new reports on two major themes. The first was biomedical issues,  including consent to treatment, the right to information, advance directives and end-of-life questions. The second, in 2010, was about issues related to 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).

In 2011, Alzheimer Europe focused on restrictions of freedom and 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. This year, we also received assistance from a legal advisor to an MEP. In addition, Alzheimer Europe received the support of Fondation Médéric Alzheimer for the development of the 32 national reports which were published in the 2011 edition of the organisation’s Dementia in Europe Yearbook.

Thanks to the support of national Alzheimer associations and legal experts, it was possible to produce national reports for all the countries of the European Union as well as for Croatia, Iceland, Norway, Switzerland and Turkey. For the United Kingdom, separate reports were produced for England and Scotland due to the differences in legal systems.

The reports covered four main themes:

  • Involuntary internment
  • Coercive measures
  • Mistreatment and abuse
  • Driving

The national reports were included in the 2011 version of the Dementia in Europe Yearbook.

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 2011, 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.

In 2011, Alzheimer Europe published 11 editions of its newsletter with one newsletter spanning the holiday period in “August-September” where there was limited news.

A total of 443 articles were featured in 2011 in Alzheimer Europe’s monthly e-mail newsletters and these articles can be broken down as follows:

Subject

Number of articles (2011)

Number of articles (2010)

Activities and projects of Alzheimer Europe

45

28

European policy developments in the field of dementia

75

54

National policy developments

29

27

Activities and projects of AE member organisations

82

93

Scientific developments

145

202

Dementia in Society

37

35

New resources and publications

27

35

The information was also included on the Alzheimer Europe website which continued to receive a significant number of visitors throughout the year. Compared to 2010, the website attracted 32.4% more visitors as the number of unique visitors increased from 164,242 in 2010 to 217,471 in 2011.

Month

Visitors (2011)

Visitors (2010)

January

14,953

12,003

February

16,987

12,723

March

18,215

15,419

April

15,494

13,071

May

16,107

12,645

June

17,359

12,757

July

20,426

12,114

August

15,057

12,623

September

19,921

15,996

October

22,796

16,364

November

22,653

16,068

December

17,503

12,459

Total

217,471

164,242

Involving people with dementia

The involvement of people with dementia in the policy making process of the organisation was identified as a priority in the new strategic plan of Alzheimer Europe.

In 2010, AE adopted recommendations for the organisation to involve people with dementia which formalised the organisation’s policy of involving people with dementia in working groups and conferences and AE’s bursary system for people with dementia to attend AE Conferences.

This was put into practice in 2011 and James McKillop and his wife Maureen were asked to participate in the working group meetings on the ethical aspects of dementia research.

The bursary system at the AE Conference in Warsaw allowed a total of 14 people with dementia and their carers (from Poland, Czech Republic, Greece, Belgium, Germany and from England and Scotland) to attend the conference. During the duration of the conference, Alzheimer Europe kept a meeting room available for the participating people with dementia for informal meetings in a relaxed atmosphere and for “getting away” from the busy conference venue. In addition, a plenary session on the “Value of diagnosis” was organised at the Conference and three people with dementia took part in a round table discussion on the importance of disclosing a diagnosis of dementia.

At the Annual General Meeting of Alzheimer Europe, the organisation’s members approved changes to the statutes to set up a European Working Group of People with Dementia with the chairperson of this group being an “ex-officio” member of the AE Board.

21st Alzheimer Europe Conference in Warsaw

In 2011, Alzheimer Europe organised its 21st Annual Conference in collaboration with the Polish Alzheimer’s Association. The theme of the conference was “European Solidarity without borders” and focused on how societies can show greater solidarity with people with dementia and their carers and how Alzheimer organisations in all European countries have campaigned for greater inclusion and participation of people with dementia.

The conference received the Patronage of the European Parliament and of the President of the Republic of Poland, Mr Bronisław Komorrowski.

A total of 472 participants from 44 countries attended the conference, making it one of our best attended events in the past ten years. Keynote speakers came from a variety of backgrounds and included:

  • Sube Banerjee (United Kingdom)
  • Maria Barcicowska (Poland)
  • Jean Georges (Alzheimer Europe)
  • Geoff Huggins (United Kingdom)
  • Alexander Kurz (Germany)
  • Archie Latta (United Kingdom)
  • Florence Lustman (France)
  • Antoni Montserrat Moliner (European Commission)
  • Maurice O’Connell (Ireland)
  • Tadeusz Parnowski (Poland)
  • Helga Rohra (Germany)
  • Marek Romecki (Poland)
  • Andrzej Szczudlik (Poland)
  • Myrra Vernooij-Dassen (Netherlands).

The number of presentations amounted to 117 and the parallel sessions were dedicated to a wide range of subjects:

  • Awareness campaigns and lobbying
  • Behavioural and psychological symptoms in dementia
  • Care evaluation
  • Dementia diagnosis and assessment
  • Dementia strategies
  • Effective communication
  • End-of-life care in dementia
  • Family carers
  • Legal issues
  • People with dementia
  • Policy initiatives
  • Preventing isolation and loneliness
  • Psychosocial interventions
  • Residential and community care
  • Sexuality and relationships
  • Supporting people with dementia and their carers.

In addition, several workshops were organised in Polish.

Alzheimer Europe asked participants to evaluate different aspects of the conference and a total of 63 feedback forms were returned. The different plenary sessions were all judged highly with between 81 and 93% of delegates rating the four plenary session as “good” or “very good” and only between 0 and 3% rating the plenary sessions as “poor”. Similarly, 85% of delegates felt that the choice of topics for parallel sessions had been “good” or “very good”. Asked whether delegates would recommend an Alzheimer Europe Conference to friends and colleagues, 98% replied positively.

The Annual General Meeting of Alzheimer Europe also took place in the framework of the 21st Alzheimer Europe Conference in Warsaw. At the meeting, the members of the organisation approved the annual and financial reports, adopted the new strategic plan (2011-2015) of the organisation and the organisation’s 2012 Work Plan and Budget.

Organisational issues

Strategic Plan

The new strategic plan of Alzheimer Europe had been developed in 2010 after a survey of the members' views on past activities and future priorities. The plan was presented at the 2010 Annual Meeting and welcomed by members. In order to allow additional feedback from members, it was decided to delay the official adoption until 2011.

For the period 2011-2015, the organisation identified the following key strategic priorities:

  1. Making dementia a European priority
  2. Supporting policy with facts
  3. Basing our actions on ethical principles and
  4. Building a stronger organisation.

This new strategic plan was adopted unanimously by the members attending the Annual General Meeting in 2011.

Membership development

With the exception of Hungary, Latvia and Lithuania, Alzheimer Europe currently counts members in all of the Member States of European Union.

In 2011, Alzheimer Europe welcomed the Jersey Alzheimer’s Association as a new full member of the organisation and Compassion Alzheimer Bulgaria as a new provisional member and also continued the provisional membership of Alzheimer Bulgaria, Alzheimer’s Disease Societies (Croatia), the Estonian Alzheimer’s Association and Alzheimer Uniti (Italy).

Collaboration with EU Initiatives

In 2011, Alzheimer Europe developed closer ties with the ALCOVE project, the European Joint Action on Dementia and organised two face to face meetings with the coordinators for the ALCOVE launch in Luxembourg and during the Alzheimer Europe Conference in Warsaw. In addition, Alzheimer Europe organised a lunch debate in Brussels where Armelle Desplanques-Leperre presented the objectives of the Joint Action to Members of the European Parliament and representatives of Alzheimer Europe’s member organisations.

Alzheimer Europe also actively participated in the stakeholder consultations organised by the Joint Programming on Neurodegeneration to ensure that the views of people with dementia and their carers were reflected in the development of the Joint Programming’s Strategic Research Agenda.

The development of the European Innovation Partnership on Active and Healthy Ageing constituted a key achievement for the European Commission involving a number of Directorates General in the process. Alzheimer Europe actively participated in a number of meetings either representing the specific interests of people with dementia or the wider patient community as a representative of the European Patients’ Forum. In particular, Alzheimer Europe contributed to workshops on “assisted living and social inclusion”, on “prevention, early diagnosis and screening” and on “care and cure”.

Alzheimer Europe continued its collaboration with the European Medicines Agency in 2011. AE staff participated in the plenary meeting for all patient organisations accredited at the European Medicines Agency and the training session on the review of product information.

Strategic Partnerships

In 2011, Alzheimer Europe continued as an active member of the European Patients’ Forum and participated in the EFPIA think tank meetings which bring together patient representatives and the pharmaceutical industry to discuss issues of common concern.

Alzheimer Europe also developed closer ties with AGE, as well as the Ageing, Mental health and Carers Intergroups in the European Parliament.

Alzheimer Europe contributed to the ongoing discussions within Alzheimer’s Disease International (ADI) on regionalisation with a view of developing closer contacts with ADI. The Chair and Executive Director of AE attended the ADI Conference in Toronto to present the organisation’s views.

Finally, Alzheimer Europe continued its networking with organisations active in the dementia field and organised meetings with representatives of the European Alzheimer’s Disease Consortium, the European Union Geriatric Medicine Society, the Interdem network and the International Association of Gerontology and Geriatrics.


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 50 to 58 by the end of 2011, representing 21 Member States of the European Union and all of the seven political groups in the European Parliament.

In 2011, Alzheimer Europe organised three successful lunch debates in the European Parliament which were well attended by MEPs:

  • On 15 March, Marina Yannakoudakis. MEP (United Kingdom) hosted a lunch debate entitled “European activities on long-term care: What implications for people with dementia and their carers” at which Arnaud Senn and Wojcech Dziworski from the European Commission presented various initiatives of the Directorates General for Employment, Social Affairs and Equal Opportunities and for Health and Consumers in the field of long-term care.
  • On 28 June, Sirpa Pietikäinen, MEP (Finland) hosted a lunch debate at which Armelle Leperre-Desplanques, coordinator of the ALzheimer COoperative Valuation in Europe (ALCOVE) project presented the aims of the Joint Action which brings together representatives of health ministries from 19 European countries.
  • The lunch debate on 6 December hosted by Frieda Brepoels, MEP (Belgium) was dedicated to a presentation of the findings of Alzheimer Europe’s survey on the “Value of knowing”.

A number of Alliance members also supported Alzheimer Europe’s work by contributing to the organisation’s Dementia in Europe magazine. This was the case of MEPs Elena Oana Antonescu (Romania), Milan Cabrnoch (Czech Republic), Nessa Childers (Ireland), Françoise Grossetête (France), Elzbieta Katarzyna Lukacijewska (Poland), Marisa Matias (Portugal), Antonyia Parvanova (Bulgaria) and Patrizia Toia (Italy).

Policy Watch and “Dementia in Europe Magazine”

A clear focus of Alzheimer Europe’s work in 2011 was on European and national policy developments in the field of Alzheimer’s disease and other related dementias.

Alzheimer Europe closely followed implementation of existing dementia strategies or Alzheimer plans in countries such as France, the Netherlands, Norway and the United Kingdom (England and Scotland). In 2011, a new strategy was launched in Denmark and the development of dementia strategies was started and/or continued in countries such as Cyprus, the Czech Republic, Finland, Ireland, Luxembourg and Malta.

In 2011, Alzheimer Europe increased the publication rate of its magazine and published three editions of the “Dementia in Europe Magazine”. These magazines included a variety of articles on policy developments, as well as interviews with European and national policy makers including EU Commissioners for Employment, Social Affairs and Inclusion László Andor and Research and Innovation Maíre Geoghegan-Quinn. 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.

The magazine launched at the 21st Alzheimer Europe Conference included a special supplement dedicated to Poland highlighting a number of interviews with Polish policy makers and their views on the situation of people with dementia in Poland.


Other activities and projects

Value of knowing

In collaboration with the Harvard School of Public Health and with the support of Bayer healthcare, Alzheimer Europe developed a survey to investigate the differences in public perception and awareness of Alzheimer’s disease and to identify the views of the general public on the value of a diagnosis of Alzheimer’s disease. In addition, Alzheimer Europe worked closely together with the Alzheimer association in France, Germany, Poland, Spain and the US where the survey was carried out.

The field work was carried out in February 2011. In total, 2,678 members of the public aged 18 years and older were interviewed by telephone. The detailed results were published in 2011 and presented at the Alzheimer’s Association International Conference (AAIC) in Paris. The poster and results were selected as a “hot topic” by the conference organisers and the publication of results generated a lot of media interest in all countries, with mentions of the study in such prestigious media outlets as Reuters, CNN, MSNBC or Spiegel.

Most respondents stated that they would see a doctor if they or a family member were exhibiting symptoms such as confusion and memory loss to clarify whether these symptoms were due to Alzheimer’s disease. AD ranked as a major concern in many of the five countries surveyed, second only to cancer (except in Poland). Those aged 60 and over had the highest fear of AD. The majority of the public surveyed had personal experience with AD and about one in three respondents had a family member with AD.

After the successful launch of the results, AE and its member organisations collaborated on the publication of a brochure with all the key survey results. This brochure was published in English, French, German, Polish and Spanish and widely disseminated in collaboration with Alzheimer Europe’s member organisations.

The results were also presented at a special symposium organised in the framework of the Conference of the International Psychogeriatrics Association in The Hague, Netherlands. At the Alzheimer Europe Conference in Warsaw, a plenary session was dedicated to a presentation and discussion of the results.

PharmaCog

Alzheimer Europe continued its involvement in the PharmaCog project. 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.

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 2011, the organisation updated the 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 Warsaw.

DECIDE

In 2011, Alzheimer Europe also continued its collaboration with the DECIDE project which is 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.

Alzheimer Europe helped with the dissemination of research results to the patient and carer community. The interim review of the project was organised in the framework of the AE Conference in Warsaw. In addition, a workshop was dedicated to a presentation of the project results to the conference audience.


Meetings attended by AE representatives

Date

Meeting

Location

13 January

EuroParl Interview with Marisa Matias, MEP

Brussels, Belgium

26 January

European Parliament Meeting hosted by Nessa Childers, MEP, Eleana Oana Antonescu, MEP and Marisa Matias, MEP

Brussels, Belgium

27 January

Meeting with European Patients’ Forum and Age Intergroup

Brussels, Belgium

1 February

Meeting with Polish Alzheimer’s Association

Warsaw, Poland

2 February

Breakfast meeting of Antoniya Parvanova, MEP on active and healthy ageing

Brussels, Belgium

2 February

Meeting with Sanofi

Brussels, Belgium

3-4 February

International Pharmaco-economic Conference on Alzheimer’s disease (IPECAD)

London, United Kingdom

10 February

EFPIA think tank

Brussels, Belgium

18 February

Meeting with Novartis

Basel, Switzerland

18-19 February

Conference of Romanian Alzheimer’s Society

Bucharest, Romania

3-4 March

Steering Committee of PharmaCog project

Paris, France

9 March

IMI Symposium at AD/PD Conference

Barcelona, Spain

10 March

Meeting with Hungarian Permanent Representation

Brussels, Belgium

13-14 March

AE Board meeting

Brussels, Belgium

14-15 March

Workshop with AE member organisations

Brussels, Belgium

15 March

European Parliament lunch-debate dedicated to European activities on long term care

Brussels, Belgium

22 March

Meeting of Philippe Juvin, MEP on clinical trials

Brussels, Belgium

22 March

Family Platform

Brussels, Belgium

26-29 March

Alzheimer’s Disease International (ADI) Conference

Toronto, Canada

29 March

Working group of “Value of Knowing” project

Toronto, Canada

1 April

GSK Health Advisory Board

London, United Kingdom

1 April

Meeting with Alzheimer’s Society

London, United Kingdom

7 April

EFPIA think tank

Brussels, Belgium

12-13 April

General Assembly of European Patients’ Forum

Brussels, Belgium

13 April

Meeting with Université de Nancy

Luxembourg, Luxembourg

14-15 April

Fundamental Rights Platform

Vienna, Austria

14-17 April

Meeting with International Association of Gerontology and Geriatrics

Bologna, Italy

3 May

Mental Health Interest Group “Stigma and Depression”

Brussels, Belgium

5 May

Meeting with Parliament Magazine

Brussels, Belgium

6 May

Meeting with France Alzheimer

Paris, France

9-10 May

Meeting with Polish Alzheimer’s Association

Warsaw, Poland

11 May

Workshop on “Framing and reframing dementia” of European Foundation Initiative on Dementia

Stirling, United Kingdom

17-19 May

Sounding Board of Interlinks project

Noordwijkerhout, Netherlands

18-20 May

Conference of European Association of Palliative Care (EAPC)

Lisbon, Portugal

20 May

Meeting with Vilija Blinkeviciute, MEP

Brussels, Belgium

20 May

Meeting with WeDo project

Brussels, Belgium

23 May

Meeting of Marisa Matias, MEP on future of EU research

Brussels, Belgium

23 May

Meeting with Alzheimer Portugal

Brussels, Belgium

25 May

Meeting with ALCOVE

Luxembourg, Luxembourg

26 May

Stakeholder meeting of Joint Programming Initiative on Neurodegeneration

Brussels, Belgium

27 May

Meeting with Polish EU Representation

Brussels, Belgium

2-3 June

Working Group meeting on ethics of dementia research

Luxembourg, Luxembourg

6 June

Meeting with Janssen

Brussels, Belgium

7 June

Meeting with Sanofi

Brussels, Belgium

14 June

Carers Interest Group

Brussels, Belgium

15 June

European Commission Workshop on European Innovation Partnership on Active and Healthy Ageing “Assisted living and social inclusion”

Brussels, Belgium

17 June

Seminar of Nessa Childers, MEP on “Shared priorities – The dementia agenda in Europe and Ireland”

Dublin, Ireland

17 June

Meeting with European Union Geriatric Medicine Society

Dublin, Ireland

20 June

Stakeholder meeting of Joint Programming Initiative on Neurodegeneration

Rome, Italy

20 June

Meeting with Françoise Grossetête, MEP

Brussels, Belgium

20-21 June

European Commission Workshop on European Innovation Partnership on Active and Healthy Ageing “Prevention, early diagnosis and screening”

Brussels, Belgium

21 June

Meeting with Sanofi

Brussels, Belgium

23 June

European Commission Workshop on European Innovation Partnership on Active and Healthy Ageing “Care and cure”

Brussels, Belgium

26-27 June

AE Board meeting

Brussels, Belgium

27-28 June

Workshop with AE member organisations

Brussels, Belgium

28 June

European Parliament lunch-debate dedicated to ALCOVE project

Brussels, Belgium

28 June

Meeting with Eurodiaconia

Brussels, Belgium

28 June

Meeting with Lundbeck and Pfizer

Brussels, Belgium

16-21 July

Alzheimer’s Association International Conference (AAIC)

Paris, France

27-29 July

Observatory Summer School on Ageing and Health Systems

San Servola, Italy

23 August

Meeting with Merck on health literacy

Brussels, Belgium

23-24 August

Working Group meeting on ethics of dementia research

Brussels, Belgium

5-9 September

International Psychogeriatrics Association (IPA) Conference

The Hague, Netherlands

6 September

Parliament Magazine Reception

Brussels, Belgium

8 September

Value of Knowing symposium at IPA Conference

The Hague, Netherlands

8 September

Meeting with Alzheimer Angehörige Austria

Vienna, Austria

12-13 September

Meeting with Polish Alzheimer’s Association

Warsaw, Poland

13 September

DECIDE project meeting

Rome, Italy

14 September

Meeting with representatives of DG SANCO

Luxembourg, Luxembourg

19 September

Meeting with France Alzheimer on World Alzheimer’s Day event

Paris, France

21 September

EPF/EFPIA/PGEU lunch seminar on “Adherence to treatment”

Brussels, Belgium

21 September

Parliament Magazine event “Facing the future”

Brussels, Belgium

22 September

EFPIA think tank meeting

Brussels, Belgium

26-28 September

Ambient Assisted Living (AAL) Forum 2011

Lecce, Italy

6 October

AE Board meeting

Warsaw, Poland

6 October

Annual General Meeting

Warsaw, Poland

6-8 October

21st AE Conference “European solidarity without borders”

Warsaw, Poland

11 October

Alzheimer’s Society lunch debate in European Parliament

Brussels, Belgium

13 October

5th Networking Event of Luxembourg BioHealth Community

Esch/Alzette, Luxembourg

17-18 October

IMI PharmaCog Review

London, United Kingdom

20 October

Meeting with Heinz K. Becker, MEP

Brussels, Belgium

24-25 October

European Commission Workshop on European Innovation Partnership on Active and Healthy Ageing

Brussels, Belgium

26-27 October

DECIDE project meeting

Rome, Italy

1-3 November

CARDI Conference on “Global Ageing meets dementia”

Dublin, Ireland

9 November

Meeting with Executive Agency for Public Health

Brussels, Belgium

9 November

Meeting with Ole Christensen, MEP

Brussels, Belgium

15 November

Health-EU Portal Editorial Board

Luxembourg, Luxembourg

17-18 November

Meeting with Alzheimer Angehörige Austria

Vienna, Austria

21 November

Meeting with Association Luxembourg Alzheimer

Luxembourg, Luxembourg

21-22 November

CARICT policy and expert workshop

Brussels, Belgium

22 November

EPDA Lunch debate: “Chronic conditions in an ageing population – a spotlight on Parkinson’s disease”

Brussels, Belgium

24 November

Meeting with SCA Global Hygiene

Luxembourg, Luxembourg

28 November

European Commission Conference “Ageing in Dignity: Designing effective strategies for tackling elder abuse”

Brussels, Belgium

29 November

Training day for patients representatives at European Medicines Agency

London, United Kingdom

30 November

EMA Working Party with Patients’ and consumers’ organisations

London, United Kingdom

1 December

Workshop on “The benefits of a simplified and coherent clinical trials framework in Europe”

Brussels, Belgium

5 December

AE Board meeting

Brussels, Belgium

6 December

European Parliament lunch-debate “Public perceptions of Alzheimer’s disease and the value of diagnosis” and launch of Dementia in Europe Yearbook

Brussels, Belgium

6 December

Meeting with office of Elzbieta Lukacijewska, MEP

Brussels, Belgium

6 December

Corporate Round Table

Brussels, Belgium

12 December

Seminar on “Quality improvement in dementia care”

Nijmegen, Netherlands

12 December

Meeting with France Alzheimer in framework of Meeting “Alzheimer’s disease: the future alongside patients and their carers”

Chilly Mazarin, France

21 December

Meeting with Marc Tarabella, MEP

Brussels, Belgium

 

 
 

Last Updated: Monday 12 November 2012

 

 
 

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