Annual Report 2004
Taking on the task of Chairperson of a pan-European voluntary organisation would seem a daunting task to many. Yet, when I was elected as Chairperson of Alzheimer Europe, I was able to rely on a sound basis established by my predecessors and the continued support of the dedicated Alzheimer Europe staff.
The Alzheimer Europe business plan gave clear directions for the various activities of the organisation. It provides the organisation with a core philosophy, the promotion of the dignity, respect and the self-determination of the person with dementia and his/her carer throughout the course of the disease and a mission statement. Alzheimer Europe is an interface between national member organisations and European structures in order to represent the interests of people with dementia and their carers, to promote information exchange and to develop policy. Furthermore, it sets out four main objectives for the organisation:
- Ensuring people with dementia and their carers are referred to Alzheimer associations,
- Promoting the autonomy of people with dementia through the right to an early diagnosis and the recognition of advance directives,
- Improving the support and counselling of carers of people with dementia at the onset of the disease and
- Promoting quality of care at home.
In 2004, we were able to progress significantly in all four of these programmes. A survey of Alzheimer Europe’s member organisations was carried out, the regional organisations of our members are now available on our web site and a draft position of Alzheimer Europe on advance directives was produced, as well as the first version of our manual for people with dementia and their carers for the time after diagnosis.
In this work, we were able to rely on the representatives of our members, as well as outside experts and I would like to take this opportunity to thank each one of them for their contributions. I am convinced that the results of all these programmes will prove useful for the work of our member organisations.
Without the support of Janssen-Cilag, Lundbeck and Pfizer, we would not have been able to carry out these ambitious tasks and I would like to thank them for their continued support and interest in our activities. Similarly, Fondation Médéric Alzheimer supported the literature search and legal update necessary for our work on advance directives for which I would also like to thank them.
Our growing recognition on a European level through our collaboration with a number of European networks constituted another important development for our organisation. Alzheimer Europe has become a respected member of the European Patients’ Forum and the European Federation of Neurological Associations and some of our activities and principles have become a reference for other patient organisations.
This annual report therefore provides not only a progress report on our business plan, but an overview of our networking activities and our various contributions to the European institutions. This is an area where our organisation needs to grow further in the coming years and the Board of Alzheimer Europe has taken the first steps towards the establishment of a new public affairs strategy for the organisation.
With the adoption of a new communication strategy, Alzheimer Europe also set itself the ambitious task of becoming one of the main providers of information on Alzheimer’s disease in Europe. Our quarterly newsletter and our web site provide a great wealth of up-to-date information on all our activities and those of our member organisations, on research findings and relevant European developments.
A recent report by the European Commission on health information on neuro-degenerative diseases complimented Alzheimer Europe on the quality of the information it provides and concluded that nothing similar existed for other neuro-degenerative diseases. This is high praise indeed and will encourage us to seek further ways of improving our information. I am glad that in all of these tasks, we are supported by a small, but highly dedicated staff and I would like to express my heartfelt thanks to Jean Georges, Dianne Gove, Sandrine Lavallé and Claire Haigh for their contributions which ensured that 2004 was another year of continued growth for the organisation.
In 2004, Alzheimer Europe:
- Improved its collaboration with International and European patient organisations and in particular Alzheimer's Disease International, the European Patients' Forum and the European Federation of Neurological Association,
- Strengthened its contacts with the scientific community through collaboration with the European Federation of Neurological Societies (EFNS), the European Alzheimer's Disease Consortium and the Early Detection and Timely Intervention in Dementia network,
- Represented the views of people with dementia and their carers in the EFNS task force for the revision of its guidelines on the diagnosis and management of Alzheimer's disease and other dementias,
- Adopted a new communication strategy to improve the information exchange between Alzheimer Europe, national associations and other organisations,
- Organised its 14th Annual Conference in Prague which brought together 300 participants from all over Europe,
- Received the support of 196 MEPs who signed a written declaration on the fight against Alzheimer's disease,
- Contributed to the Commission reflection document on the future development of a European health policy,
- Participated actively in the working group with patient organisations set up by the European Medicines Evaluations Agency,
- Continued its collaboration with other NGOs which enjoy consultative status with the Council of Europe,
- Presented the findings of its members’ survey and included regional organisations of its members on its web site,
- Carried out an extensive literature search and a comparison of the legal status of advance directives and prepared a first draft position on the subject,
- Produced a first version of a manual for people with dementia and their carers for the time after diagnosis,
- Set up a working group on home care and surveyed member organisations on the provision of home care in their respective countries.
Our core objectives
As set out in its business plan, Alzheimer Europe is an interface between national member organisations and European structures in order to represent the interests of people with dementia and their carers, to promote information exchange and to develop policy.
In 2004, Alzheimer Europe continued its networking with a number of European institutions, agencies and organisations in order to ensure that the views of people with dementia and their carers were adequately represented. Further steps were undertaken to develop the relationship between Alzheimer Europe and Alzheimer's Disease International. The organisation also played an active role as a member of pan-European patient organisations such as the European Patients' Forum and the European Federation of Neurological Associations and it continued to improve its links to professional organisations and networks of researchers, such as the European Federation of Neurological Societies, the European Alzheimer's Disease Consortium or INTERDEM.
Alzheimer's Disease International (ADI)
Alzheimer Europe and ADI continued their discussions to develop a closer relationship between the two organisations and a draft partnership agreement was prepared to highlight some areas to improve the exchange of information between the two organisations and coordinate possible joint actions.
Furthermore, representatives of Alzheimer Europe participated in the Annual Conference which ADI organised in Kyoto (Japan) from 14 to 16 October 2004, as well as the Facing Dementia Forum which Pfizer organised in collaboration with ADI in Rome on 19 and 20 June 2004.
European Patients' Forum (EPF)
Alzheimer Europe is a founding member of the EPF and has been represented by its Executive Director, Jean Georges on the EPF Board since its inaugural meeting. In 2004, the European Patients' Forum was formally launched in the European Parliament on 22 March 2004, an event which was hosted by Uma Aaltonen, MEP.
Speaking at the event, Fernand Sauer (Director for Public Health at the Directorate General for Health and Consumer Affairs) welcomed the creation of the Forum a "platform that can speak on behalf of patients and facilitate dialogue with the European institutions".
Alzheimer Europe actively contributed to the development of the Forum and represented the Forum at a number of meetings organised by the European Commission or other institutions. The European Patients' Forum also organised two workshops for patient representatives from Central and Eastern Europe to provide them with an overview of the European institutions. Both events were attended by representatives of national Alzheimer associations from the new Member States of the European Union and the accession countries.
European Federation of Neurological Associations (EFNA)
Alzheimer Europe also collaborated with other organisations of people living with brain disorders in the framework of the EFNA. Through his collaboration on the EFNA Board and as the organisation's Secretary General in 2004, Jean Georges was also appointed to the patient advisory group of the British Medical Journal and the working group with patient organisations of the European Medicines Evaluations Agency (EMEA).
European Federation of Neurological Societies (EFNS)
Conscious of the need to also develop closer ties with professional and scientific organisations, Alzheimer Europe took a more active role within the Paris conferences organised by the EFNS from 4 to 7 September 2004. Alzheimer Europe was represented at the meeting with a stand which attracted a lot of attention from the participating neurologists and participated in a symposium of the EFNS Neuroethics Panel on end-of-life decisions in dementia.
Furthermore, Alzheimer Europe was asked to nominate a representative to the EFNS task force for the revision of the organisation's guidelines on the "Diagnosis and management of Alzheimer's disease and other forms of dementia". In line with the EFNS policy for the development of such guidelines, Alzheimer Europe was specifically asked to represent the views of people with dementia and their carers on this panel which was chaired by Gunhild Waldemar (Denmark) with contributions from Bruno Dubois (France), Murat Emre (Turkey), Philip Scheltens (Netherlands), Peter Tariska (Hungary) and Martin Rossor (United Kingdom).
European Alzheimer's Disease Consortium (EADC)
As in previous years, Alzheimer Europe continued its involvement with the EADC alongside a number of highly respected research centres active in the dementia field.
In particular, Alzheimer Europe hosted and updated the website of the network and was involved in two EADC projects to represent the views of people with dementia and their carers:
- ICTUS: The impact of treatment with anticholinesterase inhibitors on Europeans with Alzheimer's disease, which is a prospective two year observational study which coordinates the centralisation of patient data available within the study's individual centres. Its primary objective is to determine whether treatment changes the pattern of institutionalisation.
- DESCRIPA: Development of screening guidelines and diagnostic criteria for pre-dementia Alzheimer's disease. The primary goal of the project is to reach an evidence-based European consensus on the identification of subjects with Alzheimer's disease in the pre-dementia stage.
Early detection & timely INTERvention in DEMentia (INTERDEM)
In 2003, Alzheimer Europe established initial contacts with the INTERDEM network, a group of researchers on the psycho-social dimension of dementia and further developed this relationship in 2004. Thus, Alzheimer Europe hosted and updated their website and provided a full opportunity to the network to present its various European projects to a wider audience during two special symposia at the Alzheimer Europe conference in Prague.
In 2004, Alzheimer Europe adopted a new communication strategy in order to improve the information exchange between the organisation, its national member associations and its growing network of professionals and politicians with an interest in dementia. A quarterly e-mail newsletter, the website and the annual conference are the key tools for the organisation in this field.
Alzheimer Europe Website
The Alzheimer Europe website plays an important role in the dissemination of the results of the various projects undertaken by Alzheimer Europe and in 2004, it had on average in excess of 10,000 visitors a month. The website is regularly updated and news covered in the e-mail newsletter is automatically included. Alzheimer Europe would like to encourage visitors to return to the website by providing a wealth of information on scientific developments in the field of Alzheimer’s disease and related disorders, but also on the activities of Alzheimer Europe, its national associations and other European organisations.
14th Annual Conference in Prague
From 21 to 23 May 2004, Alzheimer Europe organised its 14th Annual Conference in Prague. The meeting was attended by over 300 participants from all over Europe and brought together people with dementia and their carers, volunteers and staff members of Alzheimer associations, as well as professional carers and researchers in the field of dementia care. The meeting served to give an update on Alzheimer Europe projects on advance directives and home care and allowed the invited experts to address such varied subjects as the treatment of dementia, rarer forms of dementia, the role of Alzheimer associations and palliative care, to name but a few of the issues that were covered.
At the same time, Alzheimer Europe continued its policy of actively involving people with dementia in the conference programme as Peter Ashley from the United Kingdom shared his experience of obtaining a diagnosis of Lewy Body Dementia and the impact of this diagnosis on his life, while Lynn Jackson from Canada presented her views on how advance directives helped her take an active part in decisions affecting her life.
In the framework of the conference, Alzheimer Europe also presented its second award for outstanding services for people with dementia. After H.M. Queen Silvia of Sweden in 2001, the award was presented to Harry Cayton, the former Chief Executive of the Alzheimer’s Society (UK) for his contributions to our understanding of dementia and the model work of his organisation in changing how people with dementia are viewed. Finally, the Annual General Meeting was also organised in Prague and resulted in the election of a new Board to lead the organisation for the next two years.
As in previous years, Alzheimer Europe worked closely together with other organisations in monitoring European developments of relevance to patients and carers. The association continued to develop its relationship with the European Parliament and the European Commission, as well as the European Medicines Evaluations Agency. As an organisation with consultative status with the Council of Europe, Alzheimer Europe also used 2004 to further develop its collaboration with this European institution.
With regard to the European Parliament, the organisation was particularly pleased that 196 MEPs signed a written declaration on the fight against Alzheimer's disease and brain diseases tabled by Jacqueline Rousseaux, John Bowis and Miguel Angel Martínez Martínez. In this written declaration, the MEPs called upon the Commission "to allocate a significant proportion of funding for research in life sciences to the brain and brain diseases and, in particular, neuro-degenerative disease and Alzheimer's". Furthermore, they asked for a system of social protection providing practical and financial help to be put into place and suggested the setting up of a European monitoring centre for brain diseases.
Commissioner Byrne's reflections on the future development of a European health policy, as well as the discussions on patient mobility, animal research and equitable access to healthcare were of particular interest to Alzheimer Europe. The organisation endorsed a position developed within the framework of the European Patients' Forum (EPF) on the Commission's reflection document. In its reply, EPF supported the Commissioner's views of a Europe where high-quality health care is equal, accessible and affordable and where there is reliable information on health, illness and treatment options. In addition, EPF reminded the Commission of the need to involve all health stakeholders and in particular patients in shaping the policies and initiatives that influence their health and treatment options and stressed the importance of making accessible health education a priority.
European Medicines Evaluations Agency (EMEA)
Alzheimer Europe was actively involved in the working group with patient organisations set up by the EMEA and represented the European Federation of Neurological Associations at these meetings. The EMEA group addressed patient-specific questions such as:
- Pharmacovigilance and reporting of adverse drug reactions,
- Accessibility and readability of patient information leaflets,
- Transparency and dissemination of information on prescription medicines to patients.
In all three areas, as well as on the question of criteria for patient organisations to become involved in the EMEA decision making process, the group developed recommendations to improve the access of patients to relevant information on their treatments which were submitted to the EMEA management board for their adoption in 2005.
Council of Europe
As in previous years, Alzheimer Europe was represented at the quarterly meetings of organisations with consultative status at the Council of Europe. In particular, the organisation collaborated with other NGOs on health questions. Furthermore, the organisation included Elaine Gadd as a representative of the Council of Europe in the working group of its business plan priority on advance directives and was able to involve some of the national legal experts in a survey on the legal situation of advance directives and their use in a number of European countries.
Business plan programmes
Apart from clearly setting out the core objectives of Alzheimer Europe, the business plan also provides a number of priority programmes which the association should collaborate on with its national member organisations, as well as with other interested third parties.
BP 1 – Alzheimer associations
The objective set by the first business plan priority is to ensure that people with dementia are referred to their Alzheimer association at the time of diagnosis.
To show the extensive list of services and support provided by Alzheimer associations, Alzheimer Europe carried out a survey of its member organisations in 2003, as well as an inventory of the regional organisations its members. In 2004, the findings of the survey were presented on a number of occasions and the regional organisations were included in a database on the Alzheimer Europe website.
Furthermore, through its collaboration with the European Federation of Neurological Societies, Alzheimer Europe worked towards including the role of Alzheimer associations into diagnostic guidelines and encouraging professionals to refer people diagnosed to the support available from these organisations.
BP 2 – Advance directives
The second business plan priority is dedicated to the promotion of the autonomy of people with dementia through the right to an early diagnosis and the recognition of advance directives.
With the support of Fondation Médéric Alzheimer, Alzheimer Europe was able to carry out an extensive literature search on the subject, as well as a comparative overview of the legal status of advance directives in various European countries. On the basis of these findings, Dianne Gove, the project manager was able to draft a position of the organisation which will be presented for adoption at the Annual General Meeting in June 2005. In her work, she was supported by a working group chaired by Alan Jacques (United Kingdom) and consisting of Peter Ashley (United Kingdom), Holger Baumgartner (Austria), Dorthe Buss (Denmark), Elaine Gadd (United Kingdom), Nicole Kerschen (Luxembourg), Anna Mäki-Petäjä (Finland) and Anna Rovira (Spain).
A background document on the literature search and the legal update are available on the Alzheimer Europe website and the initial findings were presented at the Neuroethics meeting of the European Federation of Neurological Societies and a conference of Fondation Médéric Alzheimer. Also, articles on the findings were submitted to and accepted by a number of specialised journals.
BP 3 – Counselling and support
The third business plan programme focuses on improving the support and counselling of carers of people with dementia at the onset of the disease and aims at developing a manual for informal carers of people with dementia which will respond to the specific needs in the period of time just after diagnosis.
With the support of the working group consisting of Patrice Allard (France), Antonia Croy (Austria) Pierluigi De Bastiani (Italy), Sabine Jansen (Germany), Mireille Elsen (Luxembourg), Alicja Sadowska (Poland) and Micheline Selmes (Spain), Dianne Gove produced a first draft of the manual which was sent out for consultation to all member organisations, as well as to people for dementia to ensure that the language used is appropriate and meets their expectations.
As initially planned, the manual will be finalised in 2005 and work will start on the development of a training manual for Alzheimer associations on counselling and support of carers following diagnosis.
BP 4 – Care at home
With its fourth business plan programme, Alzheimer Europe aims at promoting quality of care at home. As with the other programmes, a working group with representatives of national organisations was set up to advise Alzheimer Europe on the work it carries out in this field. The group is comprised of Sirkkaliissa Heimonen (Finland), Sabine Henry (Belgium), Angela Keegan (Ireland), Mary Marshall (United Kingdom), Majken Ploby (Sweden) and Eugen Stefanut (Romania).
A first meeting of the group took place in 2004, but progress on this priority was less than for the other programmes due to limited staff resources. Nevertheless, an extensive literature search was carried out by Dianne Gove and member organisations were contacted for descriptions of the organisation of home care in their respective countries.
Last Updated: Tuesday 14 July 2009