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Annual Report 2012

Annual Reports


It gives me great pleasure to look back on my past year as Chairperson of Alzheimer Europe and I admit to a real sense of pride about our impressive list of achievements.

In line with the strategic plan which we adopted in 2011, this year’s Annual report is broken down according to the activities we have undertaken in order to further our four key strategic objectives of making dementia a priority, supporting policy with facts, basing actions on ethical principles and building a stronger organisation.

I am particularly proud of the progress we have achieved in involving people with dementia in all our activities and in ensuring their voices are heard loud and clear by decision makers on a European level. When we embarked on the development of our European Working Group of People with Dementia (EWGPWD), we were unsure whether we would be able to form a multi-national group to communicate in English and I was therefore delighted that we were able to start our group with no less than eleven representatives from eleven different national Alzheimer associations.

We can count on their representative Helga Rohra, who was elected as the group’s first chairperson, to actively represent their views as she sits as a member with full voting rights on the Alzheimer Europe Board. The impact of the group as a whole on our work is already significant as the group provided us with invaluable insight on how to make our Annual Conferences more dementia friendly, presented their views and shared their experiences at a lunch debate in the European Parliament and regularly contributes to our newsletter and magazine. The group has huge potential and I look forward to our continued collaboration.

The involvement of people with dementia stems from our deep-felt commitment to a rights based approach to dementia and I am therefore happy that we have continued the development of our European Dementia Ethics Network. Over the years, we have published a series of strong positions in which we promote respect of the ethical principles of autonomy, solidarity and dignity. Last year’s focus on the ethical issues linked to restrictions of freedom was a welcome addition to our work in this field.

Our campaign to make dementia a European priority continues to pay dividends as we saw the adoption of new dementia strategies in Finland and Northern Ireland in 2012 and progress towards this aim in the Czech Republic, Italy, Luxembourg and Malta. At our Annual Conference in Vienna, Rudolf Hundstorfer, the Austrian Minister of Labour, Social Affairs and Consumer Protection, committed his country’s government to developing its own national strategy.

On a European level, we saw continued interest in the work of our European Alzheimer’s Alliance and we currently have 66 Members from 22 EU countries and all political groups represented in the European Parliament. What a great demonstration that dementia truly does not know any geographical borders, or any political differences.

Our Annual Conferences also go from strength to strength and last year’s conference in Vienna saw yet another increase in the number of participants with 518 delegates from 42 countries and over 120 speakers. Our forward looking motto of “Changing perceptions, practice and policy” resonated well with the participants who provided concrete examples of projects, activities and initiatives aimed at improving the lives of people with dementia and their carers.

It is great to see that on so many levels we have seen progress with more participants and speakers at our conference, more recipients of our newsletter, more meetings attended by AE staff, more visitors to our website, more policy makers joining our European Alzheimer’s Alliance and more European projects that we have become involved in.

While this progress results in an increased workload for our organisation, I am also aware that we have not seen a corresponding increase in our staff and that these activities have been carried out by a small team of five permanent staff and two consultants. 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. Their dedication to our common cause is truly inspirational.

I also wish to thank my Board colleagues and all the representatives of our national member organisations who have freely given of their precious time to attend meetings, provide advice and respond to requests and surveys. The accomplishments of Alzheimer Europe would not have been possible without the active participation and involvement of our members across Europe.

Finally, as always, I have to finish my introduction by thanking all the supporters and sponsors of Alzheimer Europe. The operating grant by the European Commission for a third year made it easier to carry out our core activities and the additional support to our Annual Conference in Vienna was also very welcome. The support of our Luxembourg member organisations also merits a special mention, as they 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 and conference funding from a number of foundations and corporate sponsors. The full list is included in our financial report and we are deeply grateful for their support.

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

Heike von Lützau-Hohlbein

Chairperson


Executive Summary

In 2012, Alzheimer Europe

  • Received an operating grant under the EU public health programme to finance its core activities,
  • Signed a memorandum of understanding with ALCOVE, the European Joint Action on dementia and collaborated on ALCOVE’s work packages on prevalence, behavioural and psychological symptoms, timely diagnosis and advance care planning,
  • Cooperated with the Joint Programme On Neurodegenerative Diseases Research,
  • Continued its collaboration with the European Medicines Agency,
  • Increased membership of its European Alzheimer’s Alliance to 66 Members of the European Parliament from 22 Member States and all seven political groups,
  • Involved Members of the European Parliament in meetings as well as interviews for the Dementia in Europe magazine,
  • Campaigned with the Alliance for MRI to ensure the use of MRI is not jeopardised by the implementation of the Electromagnetic Fields Directive,
  • Contributed to the Commission’s reflection process on neurodegenerative diseases and campaigned for dementia to be recognised as priorities in Horizon 2020, Health for Growth and the European Innovation Partnership on Active and Healthy Ageing,
  • Monitored activities of the Council of Europe and contributed to a consultation on the use of health-related data by insurance companies,
  • Carried out an inventory of national dementia strategies and policies by focusing on medical and scientific issues (research, early diagnosis, treatment and medical education),
  • Produced 35 national reports describing national strategies and policies and published them in the 2012 edition of the Dementia in Europe Yearbook,
  • Continued to cover scientific and policy developments in the framework of its European Dementia Observatory and included a total of 446 news articles in its monthly e-mail newsletter,
  • Expanded its website and increased the number of visitors by over 53% in comparison to 2011 with total visitors of 334,542,
  • 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 issues linked to restrictive measures,
  • Published a report with its position and recommendations on the ethical issues linked to restrictive measures,
  • Promoted a zero tolerance approach to the use of restraint in people with dementia,
  • Officially launched the European Working Group of People with dementia with representation of 11 people with dementia from 11 different organisations who elected their own Chairperson and Vice-Chairpersons,
  • Welcomed Helga Rohra as the Chairperson of the European Working Group of People with Dementia as a full member of the Alzheimer Europe Board,
  • Organised meetings between members of the European Working Group of People with Dementia and Members of the European Parliament,
  • Organised a successful 22nd Annual Conference in Vienna which was entitled “Changing perceptions, practice and policy” and which was attended by over 500 delegates from 42 countries and which featured over 120 speakers,
  • Re-elected the members of the Board to lead the organisation from 2012 to 2014,
  • Consulted and involved its member organisations in meetings and projects and organised two meetings with public affairs representatives to exchange information on dementia strategies and national advocacy efforts,
  • Welcomed the Croatian and Slovenian Alzheimer’s associations as new full members of the organisation,
  • Continued its membership within the European Patients’ Forum,
  • Expanded its collaboration with AGE Platform Europe,
  • Contributed to the ongoing discussions within Alzheimer’s Disease International on regionalisation,
  • Set up the Alzheimer Europe Foundation and appointed the three first members of the Foundation Board,
  • Collaborated with the PharmaCog project by dissemination information on the project through its website and newsletter and at a lunch debate in the European Parliament,
  • Partnered with the DECIDE project and developed reports on data confidentiality laws in European countries and disseminating information to the wider patient and carer community,
  • Participated in meetings of the NILVAD project,
  • Published a sub-analysis of its “Value of knowing” survey in the peer-reviewed International Journal of Alzheimer’s disease,
  • Organised three lunch debates in the European Parliament dedicated to the PharmaCog project, the place of Alzheimer’s disease in the future European public health and research programmes and on living with dementia,
  • Published three editions of its Dementia in Europe magazine with updates on policy developments and interviews with policy makers on a national and European level.

AE Core Activities

In 2012, 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.

Objective 1: Making dementia a European priority

Collaboration with EU Initiatives

In 2012, Alzheimer Europe developed closer ties with the ALCOVE project, the European Joint Action on Dementia and organised a number of face-to-face meetings with the coordinators and work package leaders. A memorandum of understanding was signed between the two organisations with ALCOVE delegating Prof. Dawn Brooker to participate in public affairs meetings organised by Alzheimer Europe and the AE Information Officer taking part in ALCOVE work package meetings on timely diagnosis and advance care planning. AE also provided data collected in the framework of the EuroCoDe project to the ALCOVE work package on prevalence. Finally, AE supported the ALCOVE work package on behavioural and psychological symptoms by surveying its member organisations on existing educational programmes for carers of people with dementia.

Alzheimer Europe actively participated in the stakeholder consultations organised by the Joint Programme on Neurodegeneration to ensure that the views of people with dementia and their carers were reflected in the Joint Programme’s Strategic Research Agenda which was launched in February 2012.

Alzheimer Europe continued its collaboration with the European Medicines Agency in 2012. AE staff participated in the plenary meeting for all patient organisations accredited at the European Medicines Agency.

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 58 to 66 by the end of 2012, representing 22 Member States of the European Union and all of the seven political groups in the European Parliament.

Alzheimer Europe gratefully acknowledges the support of the following Members of the European Parliament who were present or represented at the various meetings organised by Alzheimer Europe: Liam Aylward (Ireland), Heinz Becker (Austria), Frieda Brepoels (Belgium), Nessa Childers (Ireland), Brian Crowley (Ireland), Nathalie Griesbeck (France), Françoise Grossetête (France), Marian Harkin (Ireland), Sean Kelly (Ireland), Peter Liese (Germany), Astrid Lulling (Luxembourg), Linda McAvan (United Kingdom), Elisabeth Morin-Chartier (France), Alojz Peterle (Slovenia), Sirpa Pietikäinen (Finland), Marc Tarabella (Belgium), Angelika Werthmann (Austria)  and Marina Yannakoudakis (United Kingdom).

A number of Alliance members also supported Alzheimer Europe’s work by contributing to the organisation’s Dementia in Europe magazine or by supporting national member organisations in their campaigns to make dementia a national and European priority: This was the case of MEPs Oana Antonescu (Romania), Maria Badia i Cutchet (Spain), Milan Cabrnoch (Czech Republic), Ole Christensen (Denmark), Françoise Grossetête (France), Frédérique Ries (Belgium), Glenis Willmott (United Kingdom) and Marina Yannakoudakis (United Kingdom).

Jointly developing policy

In 2012, Alzheimer Europe continued its collaboration with the Alliance for MRI, a coalition of organisations, scientists and Members of the European Parliament campaigning to ensure that the implementation of the Electromagnetic Fields Directive does not jeopardise the use of MRI for the diagnosis of Alzheimer’s disease and other dementias. The successful campaign resulted in the Council of Ministers first postponing the transposition deadline of the directive and ultimately excluding MRI from the scope of the directive.

AE also contributed to the Commission’s reflection process on chronic diseases by asking for neurodegenerative diseases to be included and by calling for the development of national dementia strategies and greater EU collaboration in this field.

Other EU initiatives that AE followed closely were the negotiations for Horizon 2020, the new research framework programme and the European Innovation Partnership on Active and health Ageing. AE campaigned for the inclusion of dementia as priority areas in both these important EU initiatives.

Alzheimer Europe monitored the activities of the Council of Europe and contributed to a consultation on the collection and use of health-related data by insurance companies

Objective 2: Supporting policy with facts

Comparing national systems and identifying best practices

A significant number of EU countries have developed national dementia strategies or are in the process of doing so. However, the state of development and implementation varies greatly between countries. Alzheimer Europe therefore decided to carry out an inventory and comparison of national dementia strategies. In addition, the organisation paid close attention to more general policies in those countries which have not yet developed formal strategies.

Due to the great number of issues covered in dementia strategies, AE decided to divide this work over successive years: In 2012, it focused on the medical and scientific issues (research, early diagnosis, treatment and medical education) and in 2013, it will focus on social and care aspects.

The aim of this key priority was to develop national reports with an overview of national strategies and policies and to publish them in the 2012 edition of the Dementia in Europe Yearbook.

In collaboration with representatives of its national member organisations, Alzheimer Europe was able to carry out an extensive inventory of national strategies and policies in four key areas.

First, the organisation focused on information on existing national dementia strategies or Alzheimer plans by providing background information, as well as details on their time frame, funding, implementation and monitoring. In addition, we included data on the involvement of the national Alzheimer association and/or people with dementia in these strategies. For countries where no strategy existed, Alzheimer Europe identified information on the state of development of such strategies or on campaigns promoting the adoption of such a national strategy.

The second focus of data collection was on issues surrounding the diagnosis of dementia. Details are provided of the existence of national diagnostic guidelines or policies promoting early diagnosis. In addition, we identified which healthcare professionals are responsible for diagnosing dementia, the type and degree of training for GPs in dementia and information on the tests which are required for the diagnosis of dementia.

Thirdly, information on medical treatment was collected. We included information on the availability and reimbursement of medicines in general and of the existing four Alzheimer’s treatments (donepezil, rivastigmine, galantamine and memantine) in particular. In this section, we also included information on treatment guidelines for those countries where such guidelines exist.

The fourth and final focus of the inventory was on research in the field of dementia. We aimed to identify data on exiting research programmes dedicated to the field of Alzheimer’s disease and other forms of dementia. In addition, we noted whether countries were involved in the EU Joint Programme – Neurodegenerative Disease Research (JPND) or the Joint Action “ALzheimer COoperative Valuation in Europe (ALCOVE).

As countries varied greatly as to the existence of national strategies, national diagnostic or treatment guidelines or national research programmes, the reports we produced varied greatly from one country to another.

Thanks to the support of national Alzheimer associations and external experts, it was possible to produce national reports for all countries of the European Union, as well as Croatia, Jersey, Norway, Switzerland and Turkey. For the United Kingdom, separate reports were produced for England, Northern Ireland, Scotland and Wales due to the existence of separate national dementia strategies.

These reports were included in the 2012 version of the Dementia in Europe Yearbook and have also been made available on the Alzheimer Europe website.

Alzheimer Europe received additional financial support from the Alzheimer Europe Foundation for its work on national dementia strategies.

European Dementia Observatory

Over the past years, Alzheimer Europe has continuously 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 will be monitored and reported on.

In 2012, the monthly e-mail newsletters contained information on the latest activities of Alzheimer Europe and its member organisations and those of the European Alzheimer’s Alliance, 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. Finally, Alzheimer Europe included human interest stories of people living with Alzheimer’s disease or another form of dementia and provided information on new resources.

In 2012, Alzheimer Europe published 11 editions of its newsletter with one newsletter spanning the holiday period in “August-September”.

A total of 446 articles were featured in 2012 (443 in 2012) in Alzheimer Europe’s monthly e-mail newsletters and these articles can be broken down as follows:

Subject

Number of articles (2012)

Number of articles (2011)

Activities and projects of Alzheimer Europe

49

45

European policy developments in the field of dementia and European Alzheimer’s Alliance

78

75

National policy developments

21

29

Activities and projects of AE member organisations

97

82

Scientific developments

136

145

Dementia in Society

28

37

New resources, publications and job opportunities

29

27

The information was also included on the Alzheimer Europe website which continued to receive a significant number of visitors throughout the year. Compared to 2011, the website attracted over 53% more visitors as the number of unique visitors increased from 217,471 in 2011 to 334,542 in 2012.

Month

Visitors (2012)

Visitors (2011)

January

19,762

14,953

February

21,965

16,987

March

25,706

18,215

April

26,441

15,494

May

26,533

16,107

June

28,915

17,359

July

23,327

20,426

August

23,575

15,057

September

28,504

19,921

October

41,805

22,796

November

44,645

22,653

December

33,291

17,503

Total:

334,542

217,471

Objective 3: Basing our actions on ethical principles

Ethical aspects of restrictions of freedom

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 and 2011, the focus of the 2012 activities of the European Dementia Ethics Network was on developing a report on the ethical aspects of restrictions of freedom and coercive measures.

For this work, AE was able to refer to the inventory of national laws on restrictive measures which was carried out as part of the 2011 work plan of the organisation.

As with previous ethics projects, an in-depth literature review was carried out with the aim of providing an objective analysis of the literature relating to the ethical aspects of restrictions of freedom.

This literature review and analysis was conducted together with a working group comprised of the following experts:

  • Dr Anna Maki-Petäjä-Leinonen, Researcher, Faculty of Law, University of Helsinki (Finland)
  • Dr Antonio Burgueño Torijano, Director of the National Program to Untie the Elderly and the Person with Dementia in Spain (Spain)
  • Mr Dr Brenda Frederiks, Assistant Professor Health Law, VU Medical Centre (Netherlands)
  • Prof. Chris Gastmans, Professor of Medical Ethics, Centre for Biomedical Ethics and Law, Faculty of Medicine, Catholic University of Leuven (Belgium)
  • Ms Dianne Gove, Information Officer, Alzheimer Europe (Luxembourg)
  • Ms Eleanor Edmond, Freelance trainer and consultant in capacity legislation (Ireland)
  • Dr Fabrice Gzil, Fondation Médéric Alzheimer, Research Programme Manager (France)
  • Mr James McKillop, MBE, Scottish Dementia Working Group (SDWG) and Mrs Maureen McKillop, carer (Scotland, UK)
  • Ms Jan Killeen, Policy Consultant, Alzheimer Scotland (UK)
  • Ms Maria do Rosário Zincke dos Reis, Lawyer, Alzheimer Portugal (Portugal)
  • Dr Marianna Siapera, MD, Greek Association of Alzheimer’s disease and Related Disorders (Greece).

The working group met twice in 2012. At these meetings, the experts discussed the various ethical issues that were identified, aimed to provide a balanced argument of various positions regarding the ethical issues and finally, developed a consensual position on these issues.

The issues which were examined in greater detail were the following:

  • Restrictions of the freedom to choose one’s residence or place of stay
  • Freedom to live in the least restrictive environment which pays close attention to various classes of restraint (physical restraint, chemical restraint, the use of force, coercion, environmental or psychological restraint, the use of assistive technologies)
  • Freedom to act according to individual values (sexuality, relationships and living arrangements)
  • Restrictions imposed on people’s ability to play an active role in society (voting, making a will and driving).

The literature review and key recommendations were published in a report. At the end of the report, a few useful annexes were included. The first provided an overview of 10 key points for zero tolerance for the use of restraint in persons with dementia and the second provided a personal account from a person with dementia’s views on the importance of driving. A glossary and a detailed bibliography were also included in the report.

Alzheimer Europe received additional financial support from Fondation Médéric Alzheimer and the Alzheimer Europe Foundation for its report on ethical issues linked to restrictions of freedom of people with dementia.

Objective 4: Building a stronger organisation

European Working Group of People with Dementia

In 2011, Alzheimer Europe adopted recommendations with regard to the involvement of people with dementia in AE’s activities and in 2012, the organisation started with the development of a European Working Group of People with Dementia.

In 2012, Alzheimer Europe organised three meetings with people with dementia.

  1. An exploratory meeting was held in Glasgow in April 2012 to present the aims of the group and to discuss these with interested people with dementia. This meeting also served for an exchange of views on national involvement policies and the identification of good practices. The first meeting was attended by nine people with dementia from six associations and an additional 20 representatives of associations interested in promoting the involvement of people with dementia at national level,
  2. The group was officially launched during the 22nd Alzheimer Europe Conference in Vienna and the group elected its own Chairperson (Helga Rohra from Germany) and Vice-Chairpersons (Jean-Pierre Frognet from Belgium, Agnes Houston from Scotland/United Kingdom and Jan Frederik Meijer from the Netherlands). The participants at the meeting also discussed a number of ideas on how to make conferences and meetings more inclusive. The meeting was attended by 11 people with dementia from 11 different associations. An additional four people with dementia participated as speakers or delegates in the AE Conference.
  3. A final meeting was organised in December and the group was presented at a lunch debate in the European Parliament. The group discussed ways of presenting themselves and appointed representatives to working groups set up by Alzheimer Europe. For some participating people with dementia and their carers, meetings were organised with Members of the European Parliament from their respective countries (Nessa Childers from Ireland, Linda McAvan from the United Kingdom, Alojz Peterle from Slovenia, Sirpa Pietikäinen from Finland, Marc Tarabella from Belgium). These meetings were attended by 10 people with dementia from 10 different countries.

22nd Alzheimer Europe Conference in Vienna

In 2012, Alzheimer Europe organised its 22nd Annual Conference in collaboration with Alzheimer Austria. The conference entitled “Changing perceptions, practice and policy” took place from 4 to 6 October and attracted over 500 delegates from 42 countries.

Participants represented a wide range of backgrounds within the dementia field and Alzheimer Europe was particularly glad to welcome 15 people with dementia from 12 countries. Alzheimer Europe provided bursaries to provide 11 people with dementia with transport and accommodation.

The conference featured some 120 speakers in plenary and parallel session, special symposia and workshops. The four plenary sessions focused on the changes needed to cope with the growing number of people with dementia in Europe and included a round-table discussion on “Changing policy – national strategies and European collaboration on dementia”.

The Annual General Meeting of Alzheimer Europe also took place in the framework of the 22nd Alzheimer Europe Conference in Vienna. At the meeting, the members of the organisation approved the annual and financial reports, adopted the organisation’s 2013 Work Plan and Budget and elected a new Board. Heike von Lützau-Hohlbein (Germany), Iva Holmerová (Czech Republic) and Maria do Rosário Zincke dos Reis (Portugal) were re-elected in their posts as Chairperson, Vice-Chairperson and Honorary Treasurer respectively and Charles Scerri (Malta) was elected as Honorary Secretary. Patrick Maugard (France), Maurice O’Connell (Ireland) Sirpa Pietikäinen (Finland), Alicja Sadowska (Poland) and Henry Simmons (United Kingdom) were all re-elected as Members of the Board and were joined by Helga Rohra, who joined the Board as a full voting member as the Chairperson of the European Working Group of People with Dementia.

Supporting and involving member organisations

Alzheimer Europe consistently involves its member organisations in meetings, projects and activities. A particularly successful series of meetings brought together the public affairs representatives of various national associations.

These meetings were aimed at exchanging information on national dementia strategies and policies and the campaigning and advocacy activities of Alzheimer associations. In 2012, these meetings were organised at the same time as the European Parliament lunch debates and focused on:

  • The role of general practitioners in the detection and diagnosis of Alzheimer’s disease,
  • Care pathways from primary to secondary care,
  • Diagnostic protocols,
  • The reimbursement of treatments,
  • GP training and support,
  • Support of dementia research by national governments,
  • Awareness campaigns and lobbying activities of national Alzheimer associations,
  • The involvement of national organisations in the development and monitoring of dementia strategies.

15 member organisations were represented at these meetings.

Membership development

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

In 2012, Alzheimer Croatia and the Slovenian Alzheimer’s Association were welcomed as full member organisations and the Annual General Meeting decided to continue the provisional membership of Alzheimer Bulgaria, Foundation Compassion Bulgaria and Alzheimer Uniti (Italy).

Strategic Partnerships

In 2012, 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 strengthened its collaboration with AGE Platform Europe, as well as the ageing, mental health and carers intergroups in the European Parliament. On the occasion of World Alzheimer’s Day, Alzheimer Europe and AGE issued a joint press release calling for the development of age- and dementia-friendly environments across Europe. Alzheimer Europe also contributed to AGE’s two-year WeDO project which resulted in a “European quality framework for long-term care services”.

Alzheimer Europe contributed to the ongoing discussions within Alzheimer’s Disease International (ADI) on regionalisation. The Chair of AE attended the ADI Conference in London to present the organisation’s views.

Alzheimer Europe Foundation

In an effort to diversify the funding of the organisation, the Alzheimer Europe Board decided to allocate a funding surplus of EUR 120,000 at the end of 2011 for the creation of the Alzheimer Europe Foundation. The registration process for this Foundation was started in 2012 and the Alzheimer Europe Board nominated Maria de Rosário Zincke dos Reis, Heike von Lützau-Hohlbein and Iva Holmerová as the first Board members of this independent Foundation.

The aims of the foundation are as follows:

  • To support networking activities of national Alzheimer’s associations in the framework of Alzheimer Europe
  • To encourage the involvement of people with dementia in European conferences, meetings and projects,
  • To promote European dialogue on legal and ethical issues in dementia
  • To support the exchange of information and good practices on national dementia strategies and Alzheimer’s plans.

Other activities and projects

EU Project participation

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 2012, the organisation updated the section of its Internet site dedicated to the PharmaCog project and, provided progress reports of the project in its newsletter and magazine.

AE was represented by Alex Teligadas at the PharmaCog General Assembly in Marseille on 16 and 17 January and the Annual Review meeting in Brussels on 11 May..

DECIDE

In 2012, 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, provided reports on the application of data confidentiality laws in EU countries and collaborated with Luxembourg lawyers on the wording of the legal disclaimer for users of the e-infrastructure. Alex Teligadas represented AE at the second interim review in Brussels on 2 March.

NILVAD

In 2012, Alzheimer Europe started its collaboration with the NILVAD project, a phase III clinical trial of the drug nilvadipine on some 500 people with mild to moderate Alzheimer’s disease in nine European countries. As with other EU funded projects, Alzheimer Europe represents the views of people with dementia and their carers in the research consortium, provides advice on ethical issues and disseminates results to a wider audience.

Alzheimer Europe was represented by Alex Teligadas at the launch meeting in Dublin on 15 and 16 February and a pre-trial meeting on 1 October in Amsterdam.

Other projects

Value of knowing

The results of the “Value of knowing” survey which were launched at the Alzheimer’s Association International Conference in Paris in 2011 continued to be used by the organisation in 2012 in its advocacy work calling for greater access to a timely diagnosis for people with dementia.

In 2012, a scientific paper with a sub-analysis of the research results was published in the peer-reviewed International Journal of Alzheimer’s disease: “The impact of experience with a family member with Alzheimer’s disease on views about the disease across five countries”.

Corporate Affairs

European Parliament lunch debates

In 2012, Alzheimer Europe organised three successful lunch debates in the European Parliament which were well attended by MEPs:

  • On 28 February, Elisabeth Morin-Chartier, MEP (France) replaced her colleague Françoise Grossetête, MEP (France) and hosted a lunch debate dedicated to the PharmaCog project. Dr. Elisabetta Vaudano, Principal Scientific Manager of the Innovative Medicines Initiative (IMI), presented the rationale of the European iniative in identifying bottlenecks in the drug development and ensuring the right drug gets to the right patient, at the right stage and at the right dose. Dr. Alexandra Auffret (Université de Marseille) and Jill Richardson (GlaxoSmithKline) provided an update on the project’s aims and achievements to date.
  • On 26 June, Liam Aylward, MEP (Ireland) hosted a lunch debate entitled “Alzheimer’s disease in the new European public health and research programmes” at which European Commission representatives Jürgen Scheftlein and Philippe Cupers presented the plans of their respective Directorates-General.
  • On 4 December, Sirpa Pietikäinen, MEP (Finland) hosted a lunch debated entitled “Living with dementia: learning from the experiences of people with dementia” at which three people with dementia, Nina Balackova (Czech Republic), Helga Rohra (Germany) and Daphne Wallace (United Kingdom) presented their personal experiences of living with dementia and made recommendations to attending policy makers.

Dementia in Europe Magazine

In 2012, Alzheimer Europe 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 John Dalli (Health and Consumers), Neelie Kroes (Digital Agenda) and Androulla Vassiliou (Education), Health Ministers Mars di Bartolomeo (Luxembourg), Maria Guzenina-Richardson (Finland), Astrid Krag (Denmark), and Edwin Poots (Northern Ireland) and JPND Executive Board member Enda Connolly.

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 22nd Alzheimer Europe Conference included a special supplement dedicated to Austria highlighting a number of interviews with Austrian policy makers and their views on the situation of people with dementia in their country.


Meetings attended by AE representatives

Date

Meeting

Location

5 January

Meeting with Sanofi

Brussels, Belgium

11 January

Meeting with Richard Ashworth, MEP (United Kingdom)

Brussels, Belgium

12 January

Meeting with Maria Iglesia Gomes on European Innovation Partnership on Active and Healthy Ageing

Brussels, Belgium

13-14 January

Pfizer Workshop on the “Alzheimer’s Lexicon”

Miami, USA

16 January

PharmaCog General Assembly

Marseille, France

16 January

Award Ceremony of European Foundation Initiative on Dementia

Brussels, Belgium

19 January

Meeting with Fondation Roger de Spoelberch

Luxembourg, Luxembourg

20 January

Meeting with ALCOVE

Luxembourg, Luxembourg

24-25 January

Annual Conference of European Forum for Good Clinical Practice

Brussels, Belgium

25 January

Alliance for MRI

Brussels, Belgium

7 February

Launch of Strategic Research Agenda of Joint Programming Initiative (JPND)

Brussels, Belgium

7 February

Visit of MSD Clinical Trial site

Aalst, Belgium

10 February

Meeting with Health Attaché of Hungarian Permanent Representation to the EU

Brussels, Belgium

15-16 February

NILVAD launch meeting

Dublin, Ireland

22-25 February

Conference of Romanian Alzheimer’s Society

Bucharest, Romania

27-28 February

AE Board Meeting

Brussels, Belgium

28 February

European Parliament lunch-debate “The PharmaCog collaboration”

Brussels, Belgium

28-29 February

AE Working Group on national dementia strategies

Brussels, Belgium

6 March

WeDo Meeting

Brussels, Belgium

7-8 March

Meetings with Alzheimer’s Disease International

London, United Kingdom

8 March

Interdem Meeting

London, United Kingdom

8 March

EFPIA Think Tank Meeting

Brussels, Belgium

9 March

Meeting with Alzheimer Vaucluse

Brussels, Belgium

22-23 March

EMA Workshop on “Medicines for older people”

London, United Kingdom

26 March

Meeting with Angelika Werthmann, MEP (Austria)

Brussels, Belgium

27 March

Age Intergroup of European Parliament

Brussels, Belgium

3 April

Conference on European Innovation Partnership on Active and Healthy Ageing

Brussels, Belgium

11-12 April

Meeting with ALCOVE

Paris, France

13 April

GSK Health Advisory Board

London, United Kingdom

15-17 April

European Working Group of People with Dementia

Glasgow, United Kingdom

18 April

European Patients’ Forum General Assembly

Brussels, Belgium

19 April

European Patients’ Forum Seminar

Brussels, Belgium

23-25 April

Global Forum on Incontinence

Copenhagen, Denmark

26-27 April

ALCOVE Workshop “Finding the right balance between autonomy and protection of the person with dementia”

Brussels, Belgium

2 May

Meeting with GE Healthcare

London, United Kingdom

3 May

Meeting with Novartis

Luxembourg, Luxembourg

4 May

Meeting with Lilly

Brussels, Belgium

4 May

European Parliament Health Committee meeting on “Health for Growth”

Brussels, Belgium

10-11 May

PharmaCog Interim Review

Brussels, Belgium

11 May

Meeting with Alzheimer Slovenia

Brussels, Belgium

16 May

Meeting with conference organiser of 22nd Alzheimer Europe Conference “Changing perceptions, practice and policy”

Vienna, Austria

24 May

Symposium “Ethique et recherche”

Toulouse, France

1 June

Meeting with GSK

Brussels, Belgium

6 June

IMPACT Consortium Meeting

Trondheim, Norway

7 June

European Parliament hearing on “the prevention of age related diseases in women”

Brussels, Belgium

7 June

Multi-Stakeholder initiative on Alzheimer’s disease

Brussels, Belgium

12 June

Meeting with Health Attaché of Hungarian Permanent Representation to the EU

Brussels, Belgium

14-15 June

Working group on ethical issues linked to restrictions of freedom

Brussels, Belgium

19 June

AGE Platform seminar on “Impact of the crisis on older people”

Brussels, Belgium

19-20 June

Council of Europe symposium on “Biobanks and biomedical collections”

Strasbourg, France

21 June

Sanofi meeting with patient organisations

Paris, France

22 June

Meeting with Alzheimerföreningen (Sweden)

Luxembourg, Luxembourg

25-26 June

AE Board Meeting

Brussels, Belgium

26 June

European Parliament lunch-debate “The place of Alzheimer’s disease in the new European public health and research programme”

Brussels, Belgium

26 June

Corporate Round Table

Brussels, Belgium

26-27 June

AE Working Group on national dementia strategies

Brussels, Belgium

27 June

Meeting with Fondation Médéric Alzheimer

Brussels, Belgium

4 July

ALCOVE Work Package meeting on early diagnosis

Worcester, United Kingdom

4-5 July

European Innovation Partnership on Active and Healthy Ageing Meeting of the Action Group on Age Friendly Environments

Brussels, Belgium

6 July

Meeting with Nutricia

Luxembourg, Luxembourg

9 July

PharmaCog Steering Committee Meeting

Stevenage, United Kingdom

23 July

Meeting with office of Angelika Werthmann, MEP (Austria)

Brussels, Belgium

23 July

Meeting with European Parkinson’s Disease Association

Brussels, Belgium

27-28 August

Meeting with Malta Dementia Society

Valletta, Malta

5 September

Meeting with SCRM Avocats

Luxembourg, Luxembourg

7 September

Meeting with conference organiser of 22nd Alzheimer Europe Conference “Changing perceptions, practice and policy”

Vienna, Austria

11 September

Meeting with office of Sirpa Pietikäinen, MEP (Finland)

Brussels, Belgium

20 September

Press conference for 22nd Alzheimer Europe Conference “Changing perceptions, practice and policy”

Vienna, Austria

28 September

EFPIA Think Tank Meeting

Brussels, Belgium

1 October

NILVAD Steering Committee Meeting

Amsterdam, Netherlands

1 October

Meeting with Ligue Alzheimer and Workshop on “Dementia friendly cities”

Brussels, Belgium

2 October

European Innovation Partnership on Active and Healthy Ageing Meeting of the Action Group on Age Friendly Cities

Brussels, Belgium

3-4 October

European Working Group of People with Dementia

Vienna, Austria

4 October

AE Board Meeting

Vienna, Austria

4 October

AE Annual General Meeting

Vienna, Austria

4-6 October

22nd Alzheimer Europe Conference “Changing perceptions, practice and policy”

Vienna, Austria

5 October

Meeting with Alzheimer’s Disease International

Vienna, Austria

7 October

Working group on ethical issues linked to restrictions of freedom

Vienna, Austria

12-13 October

Meeting with Cypriot Alzheimer’s Association

Nicosia, Cyprus

19 October

Sanofi meeting on Alzheimer’s disease

Chilly Mazarin, France

25 October

Meeting with European Society of Radiology

Brussels, Belgium

30 October

General Assembly of European Federation of Neurological Associations

Brussels, Belgium

31 October

Meeting with Novartis

London, United Kingdom

1 November

Study visit of Lilly’s Erl Wood Research Centre

Erl Wood, United Kingdom

6 November

Partner Conference of European Innovation Partnership on Active and Healthy Ageing

Brussels, Belgium

8 November

Meeting with European Parkinson’s Disease Association

Brussels, Belgium

13 November

Pfizer stakeholders’ day on clinical trials

Brussels, Belgium

14 November

WeDo Final Conference

Brussels, Belgium

16 November

Meeting with Redburn Solutions and Invest Northern Ireland

Luxembourg, Luxembourg

19 November

25th Anniversary Celebration of Association Luxembourg Alzheimer

Luxembourg, Luxembourg

20 November

AGE thematic seminar “Creating an age-friendly EU”

Brussels, Belgium

22 November

DSIDC Autumn Conference “Ethics and Dementia Care”

Dublin, Ireland

23 November

GSK Health Advisory Board

London, United Kingdom

27 November

Health-EU Editorial Board

Luxembourg, Luxembourg

29 November

EMA training session on pharmacovigilance legislation

London, United Kingdom

30 November

EMA Working Party with Patient and Consumer Organisations

London, United Kingdom

3 December

European Working Group of People with Dementia

Brussels, Belgium

3-4 December

AE Board Meeting

Brussels, Belgium

4 December

European Parliament lunch-debate “Living with dementia” and launch of Dementia in Europe Yearbook

Brussels, Belgium

7 December

Meeting with Alzheimer Slovenia

Brussels, Belgium

10 December

PharmaCog Steering Committee Meeting

Lille, France

11 December

EFPIA Think Tank Meeting

Brussels, Belgium

12 December

Meeting with Luxembourg Alzheimer’s Association and Integrated BioBank of Luxembourg

Luxembourg, Luxembourg

13-15 December

ELTECA Meeting on long-term care

Prague, Czech Republic

17 December

Vodafone Accessibility Awards Ceremony

Brussels, Belgium

 

 
 

Last Updated: Thursday 09 October 2014

 

 
 

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