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Annual Report 2008

Annual Reports


Preface

I am particularly delighted with the exposure Alzheimer’s disease has received at both European and national level during 2008 and this gives me great hope that our call to make dementia a European priority seems to have been heard.

Great interest was generated in the Alzheimer Europe Annual Conference in Oslo which benefited from the attendance and participation of national European policy makers. In October, perhaps the clearest signal yet that policy makers want to address the issues which surround dementia was given during the French European Presidency Conference “The fight against Alzheimer’s disease and related disorders”, which saw national Ministers from around Europe and the President of France, Nicolas Sarkozy, speak of the need for a European dementia plan. That Alzheimer Europe was a part of both the steering committee for the French Conference and also of the conference presentation itself is, in my opinion, recognition of the high quality of work we carry out.

By the end of the year, the Council European Health Ministers adopted conclusions on public health strategies to combat neurodegenerative diseases associated with ageing, in particular Alzheimer’s disease. Alzheimer Europe, alongside the 6.1 people with dementia who live in Europe, their carers and all stakeholders eagerly await the European Commission’s response to the Council’s call for the Commission to adopt an initiative in 2009 to strengthen European collaboration in the field of Alzheimer’s disease.

Members of the European Parliament have also played a crucial role by pledging their support of Written Declaration 80/2008 on priorities in the fight against Alzheimer’s disease. I would like to take this opportunity to give my heartfelt gratitude to the European Alzheimer Alliance members, Françoise Grossetête, (MEP, France), John Bowis (MEP, UK), Katalin Lévai (MEP, Hungary), Jan Tadeusz Masiel (MEP, Poland) and Antonios Trakatellis (MEP, Greece) for launching this initiative in October.

The Declaration is just one example of the ways in which the European Alzheimer’s Alliance has strived to keep the debate about dementia alive. Alliance members also hosted the three lunch debates which were held in the European Parliament during 2008. The support by the Alliance of both Alzheimer Europe’s work, as well as that of our members, has been inspiring. It was especially pleasing that Alliance members supported various World Alzheimer’s Day events throughout Europe. By the year end, MEPs who had either become a member of the Alliance and/or signed the Paris Declaration stood at 88.

National dementia plans are essential if we wish to succeed in providing appropriate and effective support to people with dementia and their carers. Progress at a national level has been extremely encouraging during 2008 with the French Alzheimer Plan being implemented. I look forward to the English Dementia Strategy coming into force and hope that other governments follow suit.

Aside from assisting in initiatives mentioned above, Alzheimer Europe completed two major projects this year. The three-year European Collaboration on Dementia project (EuroCoDe), which saw 36 researchers from 20 different countries develop consensual indicators and an ongoing dialogue, had four of the six workgroups’ findings published in the 2008 Dementia in Europe Yearbook. Some of the findings make for uncomfortable reading. For example, the prevalence working group found a strong likelihood that current data under-estimates prevalence rates for dementia and the socio-economic workgroup estimated the true cost of dementia in Europe to EUR 130bn. However uncomfortable these findings may be, they offer an invaluable tool in planning how we address the “tsunami” of dementia. I am extremely grateful to the European Commission for their support of the EuroCoDe project and sincerely hope we have the opportunity to collaborate again in the near future.

The Alzheimer Europe position and guidelines on “End-of-life care of people with dementia” were also published, offering a practical guide for all those involved in this delicate and demanding stage of dementia. Both projects had involved multi-disciplinary workgroups from across Europe and I am pleased that Alzheimer Europe could play a pivotal role in these projects enabling Alzheimer Europe to support their member organisations by including them in the working groups; facilitating an exchange of information; and raising the profile of both Alzheimer’s disease and of our members’ important work.

Alzheimer Europe began to give its communication strategy an overhaul in 2008. The first effects of this have been seen in the updated and, now, monthly newsletter as well as the launch of the Dementia in Europe magazine, of which I am particularly proud. The magazine, which is dedicated to policy on dementia, has received much positive feedback and I extend my thanks to all those who have contributed to make this possible.

These major accomplishments were achieved by a small yet dedicated and extremely capable team and I would like to thank our Executive Director, Jean Georges and his team consisting of Annette Dumas, Julie Fraser, Dianne Gove, Gwladys Guillory and Grazia Tomasini for their dedication in 2008.

Much of our work would not be possible without the continued support of the Luxembourg organisation, whose secondment of our Executive Director and provision of rent free offices have proved invaluable. The European Commission, as well as the companies (GlaxoSmithKline, Janssen-Cilag, Lilly, Lundbeck, Merck Sharp & Dohme, Novartis, Pfizer and Wyeth), which have supported us this year have also ensured that we were able to execute our extensive work programme. My heartfelt thanks go to them for their continued support

2008 illustrated how much can be achieved when both the political will and a willingness to work together are in place. I believe that as the economic downturn takes hold, we will be presented with many challenges but I am convinced that, now, more than ever, we must persevere and continue the momentum built in 2008.

Maurice O’Connell
Chairperson


Executive Summary

In 2008, Alzheimer Europe

  • Actively participated in the French Presidency Conference “The fight against Alzheimer’s disease and related disorders”,
  • Welcomed the adoption of Council Recommendations to increase pan-European research efforts and to launch a European Alzheimer’s initiative,
  • Gathered the support of 88 Members of the European Parliament who signed the Paris Declaration or joined the European Alzheimer’s Alliance,
  • Organised three lunch debates in the European Parliament in collaboration with the European Alzheimer’s Alliance,
  • Saw the launch of Written Declaration 80/2008 on the priorities in the fight against Alzheimer’s disease and campaigned for the support of Members of the European Parliament in collaboration with its national member organisations,
  • Launched a new “Dementia in Europe Magazine” focusing on policy developments in the field of dementia,
  • Published the third “Dementia in Europe Yearbook” presenting the outcomes of the Commission financed project “European Collaboration on Dementia – EuroCoDe”,
  • Gained the recognition of Health Commissionner Androulla Vassilliou as the “main network monitoring dementia cases in the EU”,
  • Actively involved its national member organisations in its campaigns towards the European institutions, as well as its communication activities and projects,
  • Developed its contacts with Alzheimer associations in Estonia, Hungary, Lithuania and Slovenia,
  • Reviewed its communication strategy by increasing the publication of its newsletter from a quarterly to a monthly basis and by publishing the “Dementia in Europe Magazine”,
  • Saw the visitors to its website increase from 670,000 in 2007 to 822,000 in 2008,
  • Started work on the overhaul of its various website with a view of integrating them into a single website in 2009,
  • Organised conference in collaboration with the Norwegian Alzheimer’s Association the 18th Alzheimer Europe Conference “Breaking Barriers” in Oslo which was attended by over 600 participants,
  • Carried out comparative surveys on the social support of people with dementia and their carers and the legal rights of people with dementia in different European countries,
  • Surveyed member organisations as to the existence of national action plans or strategies,
  • Adopted and published a position on end-of-life care for people with dementia,
  • Welcomed the Commission Transparency Initiative, questioned the Commission legal proposal on information to patients and supported the position on cross-border healthcare of the European Patients’ Forum,
  • Continued its collaboration with the European Alzheimer’s Disease Consortium, the European Association of Geriatric Psychiatry, the European Federation of Neurological Societies, the Interdem network and the International Association of Gerontology-European Region’s,
  • Collaborated with the European Patients’ Forum and worked with the European Medicines Agency,
  • Finalised its three year European Commission funded project “European Collaboration on Dementia – EuroCoDe” resulting in:
    • Recommendations and examples of good practice in the provision of social support to people with dementia and their carers,
    • A report on the socio-economic impact of dementia,
    • European guidelines on psychosocial interventions,
    • A report on risk factors and prevention,
    • A review of the prevalence of dementia,
    • A European guideline on the diagnosis and treatment of dementia.
  • Started the development of its Dementia Research Obsevatory with the aim of providing information on clinical trials to people with dementia and their carers,
  • Collaborated with the German Health Ministry on the development of a European Dementia Ethics Network.

Our strategic objectives

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

During 2008, there were strong indications that our call to make dementia a European priority was being heard. This was evident by the French Presidency conference dedicated to the fight against Alzheimer’s disease, by the Council of European Health Ministers adopting far-reaching conclusions aimed at helping, inter alia, combat Alzheimer’s disease, and also by the launch of the Written Declaration 80/2008 on the priorities in the fight against Alzheimer’s disease. Alzheimer Europe was included at both the planning stage of the Paris Conference as part of the steering committee and also at the conference itself, with both Maurice O’Connell (Chairperson) and Jean Georges (Executive Director) giving presentations in the plenary sessions.

The European Alzheimer’s Alliance, supported by Alzheimer Europe and member organisations, worked hard to secure support from the Members of the European Parliament for the Written Declaration. Alliance members also supported national Alzheimer associations by attending their celebrations of World Alzheimer’s Day in September. By the end of 2008, 88 MEPs had shown their support for Alzheimer Europe by becoming members of the Alliance and/or signing our political priorities listed in the Paris Declaration and support on at an individual level had grown to 3126 signatures by the end of the year.

Three lunch debates in the European Parliament were organised by Alzheimer Europe and hosted by Alliance members Françoise Grossetête (France), Katalin Lévai (Hungary) and Jan Tadeusz Masiel (Poland). These debates provided a platform for discussion on Alzheimer’s disease and enjoyed the strong support of MEPs and their assistants.

The Dementia in Europe magazine was launched by Alzheimer Europe in June. Dedicated to policy issues surrounding dementia, the magazine had two issues during 2008 and much positive feedback was received for both issues. Alzheimer Europe’s newsletter saw its circulation increase from quarterly to monthly from May onward.

The third Alzheimer Europe yearbook was published in 2008, providing the findings from the European Collaboration Project (EuroCoDe) for social support, socio-economic costs, non-pharmacological interventions and risk factors and prevention of Alzheimer’s disease. In her foreword, Androulla Vassiliou, the European Commissioner for Health, spoke of the Commission’s aim to give the necessary recognition required to better understand neurodegenerative diseases such as Alzheimer’s disease. She acknowledged the work carried out under the EuroCoDe project and said that “Alzheimer Europe is and has been the main network monitoring dementia cases in the EU” and thanked Alzheimer Europe for “all their valuable work”.

Involving and supporting national Alzheimer associations

Alzheimer Europe actively involved its national member organisations in its European activities with a significant number of representatives attending the various lunch debates in the European Parliament and taking part in the campaign towards Members of the European Parliament from their countries in order to secure their support of the European Alzheimer’s Alliance and the Written Declaration. The involvement of MEPs in national activities provided some national organisations with greater visibility.

The Yearbook and Dementia in Europe Magazine were developed in order to provide national member organisations with comparative information on policy developments in different European countries and with much needed information to lobby their own national governments in their campaigns to make dementia a national as well as a European priority.

The activities of Alzheimer associations also feature prominently in the various e-mail newsletters which Alzheimer Europe published on a monthly basis in 2008.

Similarly, the input of national Alzheimer associations was actively sought in the development of Alzheimer Europe’s position on end-of-life care.

Finally, Alzheimer Europe continuted its outreach to associations not currently members of Alzheimer Europe and developed its contacts with Alzheimer associations in Estonia, Hungary, Lithuania and Slovenia.

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

At the beginning of the year, the Communication Strategy of Alzheimer Europe was reviewed. The organisation changed both the layout and structure of its e-mail newsletter. Also, in order to keep the newsletter topical, the distribution was changed from quarterly to monthly).

Attention was then focused on creating a magazine, resulting in the launch of the Dementia in Europe magazine. During 2008, Alzheimer Europe has also tried to keep its members informed by using news bulletins. In particular, Alzheimer Europe kept members informed of the progress of the Written Declaration by issuing periodic updates with the breakdown by country of MEPs who had supported it.

The Alzheimer Europe website enjoyed a significant increase in visitors during 2008 up from a total of 670,098 visits in 2007 to 822,504 during 2008.

Month

Visitors 2007

Visitors 2008

January

52,697

85,050

February

45,806

62,682

March

53,640

77,837

April

45,759

79,621

May

57,415

82,058

June

66,606

67,677

July

75,573

63,658

August

67,719

58,830

September

49,676

51,210

October

50,433

72,667

November

47,373

65,884

December

57,401

54,877

Total

670,098

822,051

Average

55,841

68,504

Work began on a complete overhaul of all of our websites (Alzheimer Europe, Dementia in Europe and Alzheimer Europe Conference sites) which should be completed in 2009.

The 19th Alzheimer Europe conference, held in Oslo, saw an unprecedented 620 delegates attend over the four days. Entitled “Breaking Barriers” the conference centred around the barriers people with dementia face and how such barriers can be overcome. For many, the most memorable session was listening to Jan Henry Olsen, the Norwegian ex-Minister for Fisheries, and his wife Laila Lanes. Mr Olsen, who has been diagnosed with dementia, movingly described the impact dementia has had upon himself and his wife and talked of their desire to help eradicate the stigmatisation that surrounds this disease. Throughout the conference the message heard was that whilst barriers do exist, there is much that can be done to remove them but that this should be done in a collaborative and tailored way. Florence Lustman, the co-ordinator of the French Alzheimer plan explained the detail of the comprehensive French plan.

Promoting best practice through the development of comparative surveys

In line with this strategic objective, Alzheimer Europe continued the inventory of social support systems in the various countries of the European Union which provides information on the organisation and financing of social support, the services available for people with dementia and their carers and work/tax related support provided by the State.

Also, Alzheimer Europe continued to update the reports on the legal rights of people with dementia in the different countries covered by the organisation with a view of publishing the results in the 2009 Yearbook of the organisation.

As part of the EuroCoDe project, Alzheimer Europe also took part in an overview of existing guidelines on diagnosis, treatment and psycho-social interventions which found significant differences as to the existence, status and application of such guidelines.

Finally, Alzheimer Europe carried out a brief survey of its national organisations as to the state of development of national Alzheimer’s or dementia strategies or action plans which found that in 2008 only Norway and France had formal governments plans in this field and Scotland having given a firm commitment to making dementia a priority.

Developing policy statements

The development of a consensual approach to end-of-life care was a key achievement of Alzheimer Europe in 2008. Bringing together experts from the fields of palliative care, ethics and national Alzheimer associations, Alzheimer Europe was able to develop a thoughful and well balanced approach to this difficult issue and recommendations on how to improve end-of-life care for people with dementia. The work of the group was discussed at and approved by the Annual General Meeting in Oslo and resulted in the publication of a report on End-of-life care for people with dementia.

Alzheimer Europe also contributed to a number of European Commission consultations. In particular, the organisation welcomed the Commission Transparency Initiative which requires greater openness and transparency from lobbyists to the European institutions including on financial sponsorship received.

Alzheimer Europe also contributed to the Commission proposal on information to patients. Whilst welcoming the Commission drive for better information on medicines to the general public, the organisation did not support the Commission’s suggestion to allow market authorisation holders to provide information on their medicines in the media such as radio. TV and print media.

Finally, Alzheimer Europe supported the European Patients’ Forum in the definition of some of its more general policy statements including a contribution of the organisation on cross-border healthcare.

Developing strategic partnerships

As in previous years, Alzheimer Europe collaborated with other European networks active in the dementia field. In particular, thanks to its EuroCoDe project, Alzheimer Europe continued its relationship with the European Alzheimer’s Disease Consortium, the European Association of Geriatric Psychiatry, the European Federation of Neurological Societies, the Interdem network and the International Association of Gerontology-European Region.

Alzheimer Europe also remained an active member of the European Patients’ Forum, an umbrella organisation of pan-European patient organisations and collaborated in a number of the Forum’s activities and projects.

In the framework of the European regulatory process, Jean Georges, the Executive Director of Alzheimer Europe finished his mandate as one of the two patient representatives on the Management Board of the European Medicines Agency and the organisation continued its involvement with the Working Party of Patient and Consumer Organisations. Alzheimer Europe also supported the agency in making the information on medicines in the neurological field more user friendly and understandable.


Alzheimer Europe projects

End of life care

As mentioned previously, the end-of-life care of people with dementia constituted a key priority project for Alzheimer Europe in 2008. Following its approval at the Annual General Meeting in Oslo, the Alzheimer Europe recommendations on end-of-life care were finalised and published.

European Collaboration on Dementia

The three-year European Collaboration on Dementia (EuroCoDe) project came to an end in 2008 and the findings from four (social support, socio-economic, psychosocial interventions and prevention of Alzheimer’s disease) of the six working groups have been published in the 2008 Dementia in Europe yearbook. The results of the two remaining groups (prevalence and diagnosis and treatment) will be presented at the Brussels conference and published in the 2009 Alzheimer Europe Yearbook.

The project resulted in:

  • Recommendations and examples of good practice in the provision of social support to people with dementia and their carers,
  • A report on the socio-economic impact of dementia,
  • European guidelines on psychosocial interventions,
  • A report on risk factors and prevention,
  • A review of the prevalence of dementia,
  • A European guideline on the diagnosis and treatment of dementia.

Dementia Research Observatory

In 2008, Alzheimer Europe started with the inventory of clinical trials conducted in Europe in the field of Alzheimer’s disease and other forms of dementia. The aim of the project will be to provide a web-based database with relevant information on all clinical trials of interest to people with dementia and their carers.

Alzheimer Europe already started providing information on the launch or results of clinical trials in its newsletter and will expand on this information by also providing more general information on the conduct of research understandable to people with dementia and their carers.

Dementia Ethics Network

At the initiative of the German Health Ministry, Alzheimer Europe became actively involved in plans to develop a European Dementia Ethics Network bringing together experts from different countries and different professional backgrounds in providing guidance and discussions on ethical problems faced by people with dementia, their carers and health and care professionals. The initiative was presented at a workshop in Berlin with participants broadly welcoming the idea. Further work on this initiative will be carried out in 2009 to identify the necessary funding and partners for such an initiative.

 

European Parliament Exhibition

Photos from the exhibition which Alzheimer Europe organised in the European Parliament in 2007.

 
 

Last Updated: mercredi 21 octobre 2009

 

 
 

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