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Annual Report 2013

Annual Reports


It gives me great pleasure to write this introduction to Alzheimer Europe’s Annual Report. It is the fourth time I write such a preface and I continue to be impressed with the growth of the organisation over the past years as exemplified by the impressive list of activities and achievements.

Thanks to the support of the public health programme of the European Commission, Alzheimer Europe has been able to count on a stable source of funding to develop our key programmes. The generous support provided by Fondation Alzheimer in Luxembourg for these core activities deserves a special mention.

The involvement of people with dementia in our activities has been a key preoccupation of Alzheimer Europe and the European Working Group of People with Dementia, established in 2012, has really delivered in this area. This dynamic group of people chaired by my compatriot Helga Rohra has actively contributed to the preparations of our Annual Conference and delegated spokespersons to the various projects of the organisation. We are truly indebted to the insights and guidance which they provide us.

The European Dementia Ethics Network is another of our core activities and places ethical considerations at the heart of our organisation’s activities. Over the years, we have been able to address a number of issues and in 2013, we worked on the ethical issues linked to the perceptions and portrayal of dementia. I really hope that the report we published on the subject will encourage reflection on the importance of the meanings that we construct around dementia and the development of a more inclusive, respectful and nuanced understanding of dementia.

We have truly taken great steps towards the establishment of a European Dementia Observatory and have become a trusted source of information on scientific and policy developments in Europe. Thanks to our e-mail newsletter and our website, we were able to communicate these developments to a wide audience and I am particularly proud that our website was consulted by more than half a million people last year, an increase of 54.5% compared to 2012.

Comparing and benchmarking national dementia strategies continued to be a key activity for us. In 2013, we were able to analyse how policies of different European countries provide for care and support of people with dementia and their carers. We also carried out a mapping exercise of the activities and services of our member organisations and updated our estimates of the numbers of people with dementia in the European Union. Thanks to the support of a number of pharmaceutical companies, we were also able to start the development of our European Dementia Monitor. These different comparisons will be useful tools for policy makers and advocates interested in learning from other countries, exchanging best practices and improving the support of people with dementia in their country.

Our Annual Conference in Malta was another highlight of last year. Thanks to the excellent collaboration with the Malta Dementia Society and the support of the health programme of the European Union, we were able to deliver a high quality programme with over 100 speakers from over 30 countries. With an attendance of 520 participants, the conference proved yet again to be very popular and I am confident that the chosen theme of “Living well in a dementia-friendly society” contributed greatly to this success,

In addition to the generous funding through the health programme, Alzheimer Europe received support from FP7, the European research programme and the Innovative Medicines Initiative for its participation in a number of important research collaborations. In PharmaCog, DECIDE, NILVAD and EMIF, we represent the views of people with dementia and their carers, contribute to the ethical discussions raised by the projects and support the dissemination activities. This represents a growing and important part of our annual activities.

Our lobbying activities also continue to bear fruit. The number of countries developing and/or implementing national dementia strategies continues to grow. In 2013, Luxembourg and Switzerland were the countries that adopted new strategies with Bulgaria, the Czech Republic, Ireland, Malta, Portugal and Slovenia all making progress in this field. The support we receive from Members of the European Parliament is fantastic and we could count on 72 MEPs who had joined our European Alzheimer’s Alliance by the end of 2013. Thanks to their commitment, we saw dementia recognised as a greater priority in the new health and research programmes of the European Union.

The year ended with the organisation of the first G8 Summit dedicated to dementia under the UK Presidency of the G8. It was humbling to participate in this international event in London which called for greater collaboration on dementia and better funding of dementia research. What could be better than to finally see two of our key policy demands echoed by the health ministers from the most developed countries in the world. We will of course closely follow this process in 2014 to make sure that the ambitious declaration adopted in London will be followed by concrete actions.

Alzheimer Europe also developed a range of projects and activities for which it asked the support of pharmaceutical and other healthcare companies. We are delighted that the lunch debates we organise in the European Parliament, our Dementia in Europe magazines, our European Dementia Monitor and our Annual Conference were funded thanks to the generosity of companies such as Avanir, Baxter, GE Healthcare, GlaxoSmithKline, Janssen, Lilly, Lundbeck, Merz, Novartis, Nutricia, Pfizer, Piramal, Sanofi and SCA Hygiene Products.

Special thanks are due to SCA Hygiene Products as we partnered with the company for the development of guidelines for the promotion of good continence care for people with dementia at home, a much neglected area of research according to the findings of our literature review.

None of the above would have been possible without the fantastic Alzheimer Europe team led by our Executive Director, Jean Georges. My heartfelt thanks go to him and his team in 2013: Annette Dumas, Katherine Ellis, Julie Fraser, Dianne Gove, Gwladys Guillory, Alex Teligadas and Grazia Tomasini.

Last, but not least, I wish to thank my colleagues in the Alzheimer Europe Board who provided the staff with guidance and advice for the implementation of the organisation’s ambitious work plan. Also, the organisation was able to rely on the active participation of representatives from our national member associations as well as external experts who freely gave of their time to collaborate in our activities and projects, participate in our meetings and share their experience, research and best practices.

I look forward to continuing this high quality collaboration on behalf of people with dementia and their carers as Chairperson of Alzheimer Europe in 2014.

Heike von Lützau-Hohlbein

Chairperson


Executive Summary

In 2013, Alzheimer Europe

  • Received support from the European Commission in the form of an operating grant for the organisation’s core activities,
  • Continued its collaboration with ALCOVE, the European Joint Action on Dementia,
  • Participated in EU activities for the ”European Month of the Brain”
  • Was officially accepted as a member of the European Medicines Agency’s Patients’ and Consumers’ Working Party,
  • Developed the membership of the European Alzheimer’s Alliance bringing together 72 Members of the European Parliament from 23 Member States of the European Union,
  • Supported the Alliance for MRI which successfully campaigned for a derogation for the use of MRI from the Electromagnetic Fields Directive,
  • Collaborated with the European Patients’ Forum on cross-disease policy issues,
  • Campaigned for the inclusion of dementia as priorities of the Horizon 2020 research programme and the European Innovation Partnership,
  • Carried out an inventory of dementia strategies and policies with a focus on care and support, developed 32 national reports with its findings and published them in the 2013 Dementia in Europe Yearbook,
  • Welcomed the adoption of national dementia strategies in Luxembourg and Switzerland and progress towards their development achieved by Bulgaria, the Czech Republic, Ireland, Portugal and Slovenia,
  • Published 518 articles in its 11 monthly e-mail newsletters which were sent out to over 3,500 recipients,
  • Attracted 54.5% more visitors to its website which increased from 334,542 in 2012 to 516,862 in 2013,
  • Stepped up its social media presence and reached over 800 Twitter followers and 4,000 Facebook friends,
  • Updated its report on the prevalence of dementia and estimated the number of people with dementia in the European Union at 8.7 million,
  • Carried out an in-depth literature review and developed recommendations on the ethical issues linked to the perceptions and portrayal of dementia,
  • Actively consulted people with dementia on its activities through the European Working Group of People with Dementia which involved 12 people with dementia from 12 national organisations,
  • Involved the European Working Group of People with Dementia in the preparations and organisation of the 2013 Annual Conference in Malta, in various meetings and projects and through its Chairperson Helga Rohra in the Board of the organisation,
  • Organised its 23rd Annual Conference in St. Julian’s, Malta from 10 to 12 October under the motto “Living well in a dementia-friendly society” which attracted over 520 participants,
  • Welcomed AMPA, Monaco and FAAS, Iceland as new member organisations,
  • Adopted the St. Julian’s Appeal welcoming the G8 Dementia Summit but calling for greater inclusion of people with dementia and Alzheimer associations in the decision making process,
  • Brought together public and government affairs of national Alzheimer associations to exchange information and best practices on national dementia strategies and policies,
  • Carried out a mapping exercise of its member organisations to get a better understanding of their membership, staff and finances,
  • Continued as an active member of the European Patients’ Forum and contributed to the organisation’s consultation documents on rights and needs of older patients and the EU reform of the clinical trial regulation,
  • Collaborated with various pan-European organisations such as AGE Platform Europe, the Interest Group on Mental health, Well-Being and Brain Disorders and the Interest Group on Carers in the European Parliament,
  • Partnered with INTERDEM for the organisation of the 23rd Alzheimer Europe Conference in Malta,
  • Supported Alzheimer’s Disease International’s contributions to the World Health Organisation and the G8 Dementia Summit,
  • Finalised the setting up of the Alzheimer Europe Foundation,
  • Contributed to the dissemination activities of the PharmaCog (Prediction of cognitive properties of new drug candidates for neurodegenerative diseases in clinical development) project,
  • Continued its collaboration with the DECIDE (Diagnostic enhancement of confidence by an international distributed environment) project and took part in the final launch event,
  • Collaborated with the NILVAD consortium on the phase III clinical trial of the drug nilvadipine,
  • Started its collaboration in the EMIF (European Medical Information Framework) programme,
  • Organised three successful lunch debates in the European Parliament on clinical trial in dementia, the ALCOVE Joint Action on Dementia and the findings of the European Dementia Monitor,
  • Collaborated with the European Multiple Sclerosis Platform and the European Parkinson’s Disease Association on the organisation of a European Parliament breakfast meeting on the challenges faced by people with neurodegenerative diseases in the workplace,
  • Started the development of a European Dementia Monitor aimed at developing benchmarks and indicators to compare national dementia strategies and policies,
  • Published three editions of the “Dementia in Europe Magazine” with interviews with key EU and national policy makers and updated the layout of the magazine to give it a more contemporary look,
  • Partnered with SCA Hygiene Products on a project aimed at developing guidelines for the promotion of continence care for people with dementia at home, concluded the literature review and produced a first draft of the guideline.

AE Core Activities

In 2013, 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

Alzheimer Europe continued its collaboration with ALCOVE, the European Joint Action on Dementia, in 2013 by actively contributing to the project’s work packages on behavioural and psychological symptoms in dementia, on timely diagnosis, on advance care planning and on prevalence, as well as the project’s overall aim of developing a strategy to reduce the use of anti-psychotics. At the launch of the project report on March 2013 in Paris, Alzheimer Europe was represented by its Executive Director, Jean Georges and the Chairperson of AE’s European Working Group of People with Dementia, Helga Rohra, who were asked to comment on and evaluate the key findings of the project.

As May 2013 was designated as “European Month of the Brain”, Alzheimer Europe participated in a number of EU activities planned during this period. In particular, the organisation was represented at the EU Presidency Conferences on “European Brain Research: Successes and Next Challenges” in Brussels and on “Healthy Brain, Healthy Europe: a new horizon for brain research and healthcare” in Dublin,

Alzheimer Europe continued its collaboration with the European Medicines Agency (EMA) in 2013 and in July, AE was officially accepted as a member of EMA’s Patients’ and Consumers’ Working Party (PCWP). AE staff participated in PCWP meetings organised during the course of the year and the annual training session for representatives of patients’ associations.

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 66 to 72 by the end of 2013, representing 23 Member States of the European Union and all of the seven political groups in the European Parliament.

After the departure from the European Parliament of Frieda Brepoels, MEP (Belgium), Marina Yannakoudakis, MEP (United Kingdom) took over the position of Vice-Chairperson of the European Alzheimer’s Alliance.

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, who contributed to Alzheimer Europe’s Dementia in Europe magazine or supported national member organisations in their campaigns to make dementia a national and European priority: Martina Anderson (UK-Northern Ireland), Roberta Angelilli (Italy), Elena Oana Antonescu (Romania), Margrete Auken (Denmark), Cristian Busoi (Romania), Joseph Cuschieri (Malta), Christian Ehler (Germany), Nathalie Griesbeck (France), Françoise Grossetête (France), Anneli Jäätteenmäki (Finland), David Martin (United Kingdom-Scotland), Marisa Matias (Portugal), Alojz Peterle (Slovenia), Sirpa Pietikäinen (Finland), Daciana Sarbu (Romania), Ciprian Tanasescu (Romania), Angelika Werthmann (Austria), Corien Wortmann-Kool (Netherlands), Marina Yannakoudakis (United Kingdom) and Dan Dumitru Zamfirescu (Romania).

Jointly developing policy

In 2013, Alzheimer Europe saw the successful end to the campaign of 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 including a derogation for MRI from the scope of the directive.

Alzheimer Europe also collaborated with the European Patients’ Forum on a number of cross-disease policy issues such as the review of the EU clinical trial framework.

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.

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 focused 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 2013 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 with a focus on national policies relating to the care and support of people with dementia and their carers. In addition, AE provided details of the prevalence of dementia in the 28 member states of the European Union (currently 8.7 million) and Switzerland, Norway, Iceland, Jersey and Turkey (currently just over 0.5 million).

More specifically, the 2013 Dementia in Europe yearbook provides information about the situation in 33 countries regarding national policies focusing on the provision of care, the training of healthcare professionals and social care staff, and support at home, in the community and in nursing homes. As many countries do not yet have a national dementia strategy, we asked experts to provide us also with details of any other relevant policy provisions (e.g. guidelines, laws and regulations).

Since the publication of our last Yearbook in December 2012, Switzerland, Scotland, and Luxembourg have introduced new or updated national dementia strategies and others have made significant progress with draft plans: in Portugal, the Czech Republic, Bulgaria, Slovenia and Ireland. The yearbook therefore provides a useful overview of current national provisions in Europe and is a useful tool for policy makers interested in monitoring progress or developing new dementia strategies.

Alongside national provisions, national Alzheimer associations provide a great deal of support to people with dementia and their carers. A survey was therefore carried out and details provided into the services and support they offer. A comparative table was included in order to provide an overview of the valuable role played by Alzheimer associations in Europe. When comparing the data, it is important to bear in mind that the level and type of support provided is dependent on the resources, structure and goals of national Alzheimer associations, combined with the kind of support already provided by the state and other organisations. Tables comparing the involvement of healthcare professionals in dementia care and support, and where people with dementia receive care, have also been compiled.

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, two separate reports were produced: one for England, Northern Ireland and Wales and one for Scotland.

These reports were included in the 2013 version of the Dementia in Europe Yearbook and are also available on the Alzheimer Europe website.

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 2013, 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 2013, Alzheimer Europe published 11 editions of its newsletter with one newsletter spanning the holiday period in August-September 2013 and another covering December 2013 and January 2014.

A total of 518 articles were featured in 2013 (446 in 2012) in Alzheimer Europe’s monthly e-mail newsletters and these articles can be broken down as follows:

Subject

Number of articles (2013)

Number of articles (2012)

Activities and projects of Alzheimer Europe

61

49

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

97

78

National policy developments

28

21

Activities and projects of AE member organisations

105

97

Scientific developments

138

136

Dementia in Society

28

28

New resources, publications and job opportunities

61

37

The information was also included on the Alzheimer Europe website which continued to receive a significant number of visitors throughout the year. Compared to 2012, the website attracted 54.5 % more visitors as the number of unique visitors increased from 334,542 in 2012 to 516,862 in 2013.

Month

Visitors (2013)

Visitors (2012)

January

41,995

19,762

February

44,191

21,965

March

42,700

25,706

April

44,725

26,441

May

42,271

26,533

June

49,382

28,915

July

38,384

23,327

August

33,741

23,575

September

44,896

28,504

October

56,221

41,805

November

53,741

44,645

December

38,775

33,291

Total:

516,862

334,542

In 2013, Alzheimer Europe also stepped up its social media presence by improving its Facebook page and by starting a Twitter account. By the end of 2013, the association had reached over 800 Twitter followers and over 4,000 Facebook friends. Social media and live tweeting were also integral parts of the communication activities for the AE Conference in St. Julian’s and other events and projects of AE.

As part of the work of the European Dementia Observatory, AE wished to update the figures on the prevalence of dementia and provide national reports on the numbers of people with dementia in all EU countries based on UN population statistics and the EuroCoDe and EuroDem prevalence rates.

For the calculation of the number of people with dementia in the European Union, Alzheimer Europe used projected population statistics from the United Nations for 2012 and two sets of prevalence rates:

  1. Prevalence rates from the EURODEM study were used to calculate the numbers of people with dementia in the 30 to 59 age group.
  2. Prevalence rates from the European Commission funded EuroCoDe study were used to calculate the numbers of people with dementia in the 60 to 95+ age group.

The combination of both sets of prevalence rates and the UN population statistics allowed Alzheimer Europe to calculate the numbers of people with dementia in all EU Member States and Jersey, Norway, Switzerland and Turkey.

The project resulted in the following deliverables:

  • A table with the numbers of men and women affected by dementia aged between 30 and 59 and for 5-year age groups thereafter (from 60 onwards) for each member state of the European Union.
  • A table with the numbers of men and women affected by dementia aged between 30 and 59 and for 5-year age groups thereafter (from 60 onwards) in Jersey, Iceland, Norway, Switzerland and Turkey.
  • A comparative table with both sets of countries separated so as to have a figure for the European Union, and one for additional countries in which Alzheimer Europe has a member association.

These tables were included in the national reports which are included in the 2013 Dementia in Europe Yearbook.

Objective 3: Basing our actions on ethical principles

Ethical aspects of restrictions of freedom

Continuing the focus on ethical issues from previous years (assistive technologies in 2010, dementia research in 2011 and restrictions of freedom in 2012), AE dedicated its 2013 work on ethical issues to societal attitudes to dementia and an ethical discussion on the portrayal of dementia, the use of language and perceptions of the disease and how they contribute to social exclusion, stigma and discrimination.

This was done in collaboration with the experts identified through the European Dementia Ethics Network. In this area, AE aimed at carrying out an extensive literature review and develop recommendations in collaboration with ethical experts.

An in-depth literature review was carried out with the aim of providing an objective analysis of the literature relating to the ethical implications for people with dementia of being perceived and portrayed in particular ways. 

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

  • Dr Dianne Gove, Alzheimer Europe (Luxembourg), Chair of the working group
  • Dr Debby Gerritsen, Radboud University Medical Center, Nijmegen (Netherlands)
  • Ms Bénédicte Gombault, King Baudouin Foundation, Brussels (Belgium)
  • Dr Fabrice Gzil, Fondation Médéric Alzheimer, Paris (France)
  • Ms Jana Kasparkova, ICU in Teaching Hospital, Pilsen and Faculty of Humanities, Charles University in Prague (Czech Republic)
  • Prof. Jan Oyebode, Bradford Dementia Group, University of Bradford (UK)
  • Ms Sirpa Pietikaïnen, MEP (Finland)
  • Dr Christine Swane, EGV Foundation, Copenhagen (Denmark)
  • Associate Prof. Baldwin Van Gorp, KU Leuven (Belgium)
  • Ms Aino Valtanen, Assistant to MEP (Finland)
  • Rev. Richard Wallace (UK - carer)
  • Dr Daphne Wallace (UK – person with dementia)

The working group met twice in 2013. At these meetings, the experts discussed the various ethical issues that were identified, aimed to provide a balanced and non-judgemental overview of the many different ways that dementia and people with dementia are both perceived and portrayed and to consider the potential ethical impact of such perceptions and portrayals. The working group sought and achieved consensus and drafted a set of guidelines for reflection linked to the perception of dementia and issues to consider when portraying people with dementia.

The main issues addressed by the working group and considered in relation to their ethical implications were:

  • Explanatory models
  • Words
  • Metaphors
  • Strategic communication
  • The person with dementia
  • The attributes/characteristics of dementia
  • The portrayal of dementia in the media
  • The portrayal of dementia in films
  • The perceptions of those who are perceived and portrayed

The work in 2013 resulted in the development of a report on the ethical issues linked to the perceptions and portrayal of dementia and people with dementia. The report looks at the many different ways that people make sense of dementia. It covers perceptions associated with the experience of dementia, the cause of dementia and the possible implications of dementia on individuals and society.

There are also sections on the use of metaphor and on the portrayal of dementia in the media and in films. Each section contains details of the reflection by the multi-disciplinary working group on the ethical implications for people with dementia of being perceived and portrayed in a particular way.

The report ends with a set of guidelines on things to consider when writing about or portraying dementia and people with dementia. The report is also available on the Alzheimer Europe website.

Alzheimer Europe received additional financial support from Fondation Médéric Alzheimer 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

Thanks to its 2010 operating grant and the consultation of its member organisations, user involvement was identified as a key priority for Alzheimer Europe and this led to the setting up of a European Working Group of People with Dementia in 2012. The working group was scheduled to meet twice in 2013 and the Chair of the Working Group participated in the meetings of the AE Board as a full Board member. The Group was consulted and asked to ensure user representation and involvement in all AE activities.

Members of the working group were nominated by the national member organisations of Alzheimer Europe and AE supported the attendance of one person with dementia from nominating organisations as well as that of carer or other supporter.

Alzheimer Europe was able to involve 12 different people with dementia (target of 15) from 12 national organisations (Belgium, Czech Republic, Finland, Germany, Ireland, Jersey, Netherlands, Norway, Slovenia, Sweden, United Kingdom (England and Scotland)).

Amongst their more notable contributions, we would like to highlight the following:

  • Helga Rohra (Germany) was elected as Chairperson of the European Working Group of People with dementia and became an ex-officio member of the AE Board to represent the views of people with dementia in the organisation’s governing body.
  • Daphne Wallace (United Kingdom-Scotland) was an active member of Alzheimer Europe’s working group on the ethical aspects of the image and portrayal of dementia.
  • Nina Balackova (Czech Republic), Jean-Pierre Frognet (Belgium), Helga Rohra (Germany) and Agnes Houston (United Kingdom – Scotland) attended a breakfast meeting organised by Angelika Werthmann, MEP (Austria) in the European Parliament on the challenges of neurodegenerative diseases in the workplace.

In 2013, the EWGPWD and/or its members attended the following meetings

  1. 12 April 2013 meeting of the EWGPWD in Brussels
  2. 8-9 July 2013 meeting of the Executive of the EWGPWD with the Executive Director of Alzheimer Europe in Brussels
  3. 9 October 2013 in Malta: meeting of the full group followed by a workshop organised by all members and a presentation by Nina Balackova in the plenary session of Alzheimer Europe’s annual conference.
  4. The two meetings of Alzheimer Europe’s working group on the ethical issues linked to perceptions and the portrayal of dementia and people with dementia (Daphne Wallace).
  5. The two meetings of Alzheimer Europe’s working group for the project on improving continence care for people with dementia living at home (in collaboration with SCA Global Hygiene) (Helga Rohra).
  6. Representation of the EWGPWD by Helga Rohra (Chair of the group) at the Board meetings of Alzheimer Europe

23rd Alzheimer Europe Conference in St. Julian’s, Malta

Alzheimer Europe held its 23rd Annual Conference in St. Julian’s, Malta during 10-12 October with the motto “Living well in a dementia-friendly society”.

The conference was held under the Patronage of His Excellency Dr George Abela, President of Malta who officially opened the conference on 10 October by welcoming over 520 delegates to the island.

The conference featured over 110 speakers in plenary and parallel sessions, social symposia and workshops as well as poster presentations with the four plenary sessions being dedicated to integrated care, prevention, innovation and dementia-friendly society.

The European Working Group of People with Dementia played an integral part in the organisation and planning of the event and nominated a keynote speaker to deliver a presentation on living with dementia and organised a special symposium on the activities and advocacy efforts of people with dementia.

The Annual General Meeting of Alzheimer Europe also took place in the framework of the 23rdd Alzheimer Europe Conference. At the meeting, the members of the organisation approved the annual and financial reports, adopted the organisation’s 2014 work plan and budget and welcomed Monaco and Iceland as new member organisations.

The member associations also adopted the St. Julian’s Appeal welcoming the UK initiative of convening a G8 Summit on Dementia but calling for greater inclusion of people with dementia and Alzheimer associations in the decision making process, the adoption of a holistic approach to dementia research, the increase in funding for all areas of dementia research and for the recognition of dementia as a priority in all international organisations including the World Health Organisation (WHO).

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 2013, these meetings were organised at the same time as the European Parliament lunch debates and focused on:

  • Training of social and health care professionals,
  • Organisation and quality of care and support
  • Standards of care
  • Carer support
  • Prevalence of dementia

In addition, Alzheimer Europe fully involved its member organisations in the development of its European Dementia Monitor. The organisation also paid special attention to including news and information on successful projects, campaigns and initiatives of its member associations in its communication tools, such as the newsletter, magazine and website.

Finally, Alzheimer Europe carried out a mapping exercise of its member organisations to get a better understanding of their membership, the number of regional organisations, staff and finances.

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 2013, AMPA (Monaco) and FAAS (Iceland) 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 2013, Alzheimer Europe continued as an active member of the European Patients’ Forum and contributed to a number of consultation documents, such as the EPF position statement on the rights and needs of older patients or the EU reform of the clinical trial regulation.

Similarly, Alzheimer Europe continued its collaboration with other EU organisations, such as AGE Platform Europe, the Interest Group on Mental Health, Well-Being and Brain Disorders and the Interest Group on Carers of the European Parliament.

The partnership with INTERDEM, the network of researchers and academics in the field of psychosocial interventions resulted in joint meetings during the 23rd AE Conference in St. Julian’s, Malta and the invitation to Alzheimer Europe to collaborate in a number of successful applications to the FP7 Programme.

Alzheimer Europe was also represented at the Annual Conference of Alzheimer’s Disease International (ADI) in Taipei, Taiwan and AE’s Executive Director joined the ADI delegation for the World Health Assembly in Izmir. The association also collaborated with ADI on the preparations for the G8 Dementia Summit.

Alzheimer Europe Foundation

After an initial grant of EUR 120,000 for the setting up of the Alzheimer Europe Foundation in 2012, Alzheimer Europe continued with the registration process of the foundation in Luxembourg. This process was successfully completed in 2013 and the Alzheimer Europe Board nominated Marc Schaefer as an additional member of the Foundation Board to join the existing members Maria de Rosário Zincke dos Reis, Heike von Lützau-Hohlbein and Iva Holmerová.

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 2013, the organisation updated the section of its website dedicated to the PharmaCog project and provided progress reports of the project in its newsletter and magazine. AE was represented by Alex Teligadas at a Steering Committee meeting on 27 January and at the General Assembly on 3-4 June, both in Lille.

DECIDE

In 2013, 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 DECIDE project ended in April 2013. Alex Teligadas represented AE at the final project meeting on 22 February and at the final review on 16-17 April, both in Rome.

NILVAD

In 2013, Alzheimer Europe continued 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 and disseminates results to a wider audience.

Alzheimer Europe was represented by Alex Teligadas at the General Assembly on 13-14 May in Hohenkammer (Germany) and the Steering Committee meeting on 11 December in London.

EMIF

The five year European Medical Information Framework project began in 2013 with funding from IMI. EMIF aims to develop a framework for evaluating, enhancing and providing access to human health data across Europe. This framework will support various disease areas including dementia, where the project aims to identify predictors of Alzheimer’s disease in the pre-clinical and prodromal phases.

Alzheimer Europe is a partner in work package 15 - “Use and sustainability models, community building and outreach” and work package 16 - “Programme management and dissemination”.

The organisation was represented by Alex Teligadas at the project kick-off meeting on 28 February - 1 March in Brussels, project meetings on 16-17 May in Barcelona, 10-11 June in Sitges (Spain), 11 September and 3-4 October in Brussels and the General Assembly on 12-13 December in Amsterdam.

Corporate Affairs

European Parliament lunch debates

In 2013, Alzheimer Europe organised three successful lunch debates in the European Parliament which were well attended by MEPs:

  • On 26 February, Sirpa Pietikäinen, MEP (Finland) hosted a lunch debate on “Clinical trials on Alzheimer’s disease: update on recent trial results and the new regulatory framework”. Alexander Kurz gave an overview on the evolution of Alzheimer’s disease in the brain, on available treatments and ongoing research and clinical trials in the field. He was followed by Fabio d’Atri from the European Commission (Health and Consumer DG) who presented the Commission proposal for a “Regulation on clinical trials on medicinal products for human use”.
  • On 18 June, Marias Matias, MEP (Portugal) invited delegates to a lunch debate dedicated to a presentation of the key findings of the ALCOVE Joint Action on Dementia. These findings were presented by Armelle Leperre-Desplanques of the Haute Autorité de Santé of France who was the principal investigator for the two year collaboration between national health ministries.
  • Joseph Cuschieri, MEP (Malta) hosted the lunch debate on 3 December. At the meeting, Jean Georges, Alzheimer Europe’s Executive Director, presented the findings of the organisation’s European Dementia Monitor which provided comparative data on national dementia policies in 33 European countries.

In addition, Alzheimer Europe co-organised a European Parliament event on the challenges faced by people with neurodegenerative diseases in the workplace together with the European Multiple Sclerosis Platform and the European Parkison’s Disease Association. The breakfast meeting was hosted by Angelika Werthmann, MEP (Austria).

European Dementia Monitor

In 2013, Alzheimer Europe started the development of the European Dementia Monitor. This project aimed at developing benchmarks to compare national dementia strategies and policies in three key areas:

  • Medical/scientific issues: prevalence, diagnosis, treatment
  • Care and social issues: social support, Alzheimer’s associations, care
  • Policy and legal issues: dementia strategies and research, guardianship, international conventions.

The launch meeting in February was attended by 28 people and included representatives from national Alzheimer associations and pharmaceutical companies. The group decided on a number of indicators to include in the project and was updated on progress with regard to data collection.

The preliminary results were presented in December 2013 at a lunch debate in the European Parliament.

Dementia in Europe Magazine

In 2013, 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 Commissioner Tonio Borg (Health), national health or social affairs ministers Vytenis Povilas Andriukaitis (Lithuania), Mars Di Bartolomeo (Luxembourg), Kathleen Lynch (Ireland), Alex Neil (UK-Scotland) and Marc Spautz (Luxembourg).

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 23rd Alzheimer Europe Conference included a special supplement dedicated to Malta with a number of interviews with Maltese policy makers (Franco Mercieca, Parliamentary Secretary for the Rights of Persons with Disability and Active Ageing and Joseph Cuschieri, MEP), representatives of the Malta Dementia Society and Maltese carers on their views on the situation of people with dementia in their country.

The layout and font used in the magazine were also improved in 2013 to give the publication a more contemporary look.

Other projects

Promoting continence care

Alzheimer Europe partnered in 2013 with SCA Global Hygiene on a project aimed at developing guidelines for the promotion of continence care for people with dementia at home.

Due to the lack of research on this specific topic, an approach based on expert consensus was adopted. A steering group and expert working group were set up comprised of experts in both dementia and continence care, as well as a person with dementia from the European Working Group of People with Dementia and an informal carer with experience providing continence care to a person with dementia.

An integrative review of relevant literature was carried out, including peer reviewed research articles as well as reports from NGOs in the two domains. The expert working group met twice. At the first meeting on 21 March 2013 in Luxembourg, the group discussed the reviewed literature and determined the scope and possible content of the future guidelines. It was decided to target the guidelines at a broad audience of people in the early to moderate stages of dementia, informal carers and health and social care professionals as it was felt that all three groups would benefit from such guidelines. At the second meeting on 28 October 2013 in Brussels, a first draft of the guidelines was discussed.


Meetings attended by AE representatives

Meetings attended by AE staff in the framework of the 2013 Operating Grant

Date

Meeting

Location

9 January

PACE Consortium Meeting

Brussels, Belgium

17 January

Meeting with Alzheimer’s Disease International

Luxembourg, Luxembourg

21 January

ALCOVE Meeting on advance directives and competence assessment

Brussels, Belgium

25 January

INTERDEM Meeting

Prague, Czech Republic

29-30 January

EFGCP Seminar on the ethical dimensions of emerging technologies in clinical trials and research

Brussels, Belgium

18 February

European Voice Health Check Briefing on Alzheimer’s disease

Brussels, Belgium

19-20 February

EFNA Workshop on “European Month of the Brain

Brussels, Belgium

21 February

Meeting with Angelika Werthmann, MEP (Austria)

Brussels, Belgium

1 March

EIP-AHA Action group meeting on age-friendly communities

Brussels, Belgium

4 March

Meeting with Parliament Magazine

Brussels, Belgium

5 March

Global CEO Initiative meeting in European Parliament

Brussels, Belgium

7 March

IMI/Critical Path Institute meeting on Alzheimer’s disease

Brussels, Belgium

8 March

AETIONOMY exploratory meeting

St. Augustin, Germany

12 March

RightTimePlaceCare project meeting

Brussels, Belgium

15 March

Meeting with DG SANCO (Michael Hübel and Jürgen Scheftlein)

Luxembourg, Luxembourg

21 March

Meeting with Joseph Cuschieri, MEP (Malta)

Brussels, Belgium

25 March

Meeting with EMSP and EPDA

Brussels, Belgium

28 March

Participation in ALCOVE launch event

Paris, France

3 April

EMA Scientific Advice Meeting

London, UK

3 April

Meeting with US Alzheimer’s Association

London, UK

18 April

European Commission conference “Frailty in old age”

Brussels, Belgium

23 April

STOA Conference on “European Month of the Brain”

Brussels, Belgium

14 May

European Commission “Month of the Brain” Conference

Brussels, Belgium

15 May

European Parliament workshop on “Access to quality long-term care”

Brussels, Belgium

16 May

Workshop on restrictions of freedom at Edinburgh School of Law

Edinburgh, Scotland, UK

21 May

Meeting with Alzheimer Uniti

Luxembourg, Luxembourg

22-24 May

EPF General Assembly and Annual Conference

Dublin, Ireland

27-28 May

EU Presidency Conference: “Healthy Brain Healthy Europe”

Dublin, Ireland

28 May

Meeting with Ligue Alzheimer

Libramont, Belgium

29 May

D4 Action Group of EIP-AHA

Brussels, Belgium

29 May

Meeting with AETIONOMY partners

Brussels, Belgium

30 May

EBC Conference in European Parliament: “The prospects of brain research with Horizon 2020”

Brussels, Belgium

3 June

Alzheimer Scotland conference

Glasgow, Scotland, UK

3 June

“Age friendly environments for Europe” conference of WHO Europe and DG Employment and Social Affairs

Brussels, Belgium

4 June

EMA discussion meeting on disease progression model

London, UK

17-18 June

Regional UN Symposium “Preventing abuse and neglect of older persons”

Brussels, Belgium

9 July

EP breakfast meeting on the challenges of neurodegenerative diseases in the workplace

Brussels, Belgium

8 August

Meeting with Executive Agency for Health and Consumers

Luxembourg, Luxembourg

2 September

Meeting with Slovenian Alzheimer’s Society

Brussels, Belgium

17-20 September

Université d’été “Alzheimer, éthique et société”

Lille, France

25 September

Ambient Assisted Living Forum

Norrköping, Sweden

25-26 September

EMA Patients’ and Consumers’ Working Party

London, UK

30 September

Meeting with Mental Health Europe

Brussels, Belgium

1 October

EPF launch of European Parliament election manifesto

Brussels, Belgium

2 October

European Parliament lunch debate of Innovative Medicines Initiative

Brussels, Belgium

13 October

Mediterranean Alzheimer’s Alliance Meeting

St. Julian’s, Malta

15 October

Carers Interest Group in the European Parliament

Brussels, Belgium

17 October

Meeting with Sirpa Pietikäinen, MEP (Finland) and constituents

Brussels, Belgium

5 November

EPF Campaign Manifesto Launch

Brussels, Belgium

13 November

Long-term care conference of European Institute of Health

Brussels, Belgium

14 November

Anniversary Conference of Fondazione Roma

Rome, Italy

18 November

Meeting with office of Joseph Cuschieri, MEP (Malta)

Brussels, Belgium

25 November

Scientific Advice Meeting of EMA

London, UK

25 November

EIP AHA Conference of Partners

Brussels, Belgium

26 November

Cardiff University Conference “Basic mechanisms in neurodevelopmental disorders”

Brussels, Belgium

5 December

Eurodiaconia event “Active ageing for the oldest”

Brussels, Belgium

10 December

Meeting with Alzheimer Scotland

Glasgow, Scotland, UK

10 December

EMA training session

London, UK

12-13 December

DANDEC project meeting

Prague, Czech Republic

16 December

WHO Europe Region on “Healthy ageing”

Utrecht, Netherlands

Other meetings attended by AE staff in 2013

Date

Meeting

Location

10 January

Sanofi EU Patients Workshop on Clinical Trials

Brussels, Belgium

10-11 January

Meeting with Malta Dementia Society

St. Julian’s, Malta

28 January

EuropaBio meeting in EP on future of clinical trials

Brussels, Belgium

12 February

Meeting with Nutricia

Luxembourg, Luxembourg

22 February

Final workshop of DECIDE project

Rome, Italy

26 February

Company Round Table and Dementia Monitor Meeting

Brussels, Belgium

26 February

European Parliament lunch debate: Clinical trials in Alzheimer’s disease

Brussels, Belgium

28 February

Meeting with Vodafone

Brussels, Belgium

28 February-1 March

Launch meeting of EMIF

Brussels, Belgium

21 March

Continence care working group

Luxembourg, Luxembourg

4 April

Meeting with Piramal

Luxembourg, Luxembourg

9 April

EFPIA think tank meeting

Brussels, Belgium

16-20 April

Annual Conference of Alzheimer’s Disease International

Taipei, Taiwan

17 April

DECIDE final project review

Rome, Italy

25 April

Meeting with Lilly

Luxembourg, Luxembourg

26 April

GSK Advisory Board

London, UK

13-14 May

NILVAD General Assembly

Hohenkammer, Germany

16 May

EMIF project workshop

Barcelona, Spain

3-4 June

PharmaCog Steering Committee meeting

Lille, France

10-11 June

EMIF Platform meeting

Sitges, Spain

14 June

EMIF communications workshop

Luxembourg, Luxembourg

18 June

Company Round Table and Dementia Monitor Meeting

Brussels, Belgium

13-18 July

Alzheimer’s Association International Conference

Boston, USA

14 July

Meetings with Alzheimer’s Disease International, Coalition against Major Diseases and CEO Initiative on Alzheimer’s disease

Boston, USA

16 July

Meeting with Piramal

Boston, USA

17 July

Meeting with Lancet Neurology

Boston, USA

2 September

Meeting with AE Conference team

St. Julian’s, Malta

11 September

EMIF project meeting

Brussels, Belgium

16-18 September

WHO Europe Regional Committee

Izmir, Turkey

19 September

EFPIA think tank

Brussels, Belgium

25 September

J&J roundtable discussion on the pharmaceutical sector

Brussels, Belgium

3 October

EMIF Communications workshop

Brussels, Belgium

10-12 October

AE Annual Conference

St. Julian’s, Malta

11 October

Meeting with Nutricia

St. Julian’s, Malta

28 October

Continence care working group

Brussels, Belgium

22 November

GSK Advisory Board

London, UK

3 December

EP lunch debate on findings of European Dementia Monitor

Brussels, Belgium

3 December

Company Round Table

Brussels, Belgium

11 December

NILVAD Steering Committee meeting

London, UK

12-13 December

EMIF General Assembly

Amsterdam, Netherlands

13 December

EFPIA think tank

Brussels, Belgium

 

 
 

Last Updated: Thursday 13 November 2014

 

 
 

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