Annual Report 2002
In many ways, 2002 was a year of transition for Alzheimer Europe. It saw the completion of a number of successful European projects, a financial reorientation of the organisation, the development of a business plan for the organisation and, last but not least, a number of personnel changes at the level of the Board of Directors.
As I am looking back on my first year as Chairperson of Alzheimer Europe, I would therefore like to start by paying a special tribute to my predecessor, Jeannot Krecké, who chaired the organisation from 1996 to 2002. His achievements are manifold and I would like to take this opportunity to enumerate just a few of them.
During the six years under his excellent leadership, Alzheimer Europe grew from 20 to 31 member organisations and carried out eight successful European projects with a corresponding increase in its financial capabilities. Furthermore, Alzheimer Europe gained recognition as the representative of the interests of people with dementia and their carers in the European institutions, as well as in a large number of other European organisations. What better proof to this recognition than the fact that Alzheimer Europe was granted consultative status with the Council of Europe? I am particularly pleased, that Jeannot agreed to stay on the Board of Alzheimer Europe where we will be able to draw on his vast experience for the future direction of our organisation.
2002 also constituted a hiatus for Alzheimer Europe with regard to European funding. It was the first time we started the year without any specific European funding. In this context, I find it worthwhile to point out that in 1997, the funding of our European projects constituted almost 70% of the overall income of the organisation. In comparison, European funding in 2002 amounted to less than 10% of Alzheimer Europe’s revenue.
Despite this pronounced decrease in European funding, the financial situation of Alzheimer Europe is healthy and we have been able to diversify our income. Our member organisations contribute to a larger extent than before and I would like to single out in particular our Luxembourg association and the Luxembourg Ministry for Family for their substantial contribution. Finally, we were also able to count on the continued financial support of Janssen-Cilag, Pfizer and Merck Sharpe & Dohme for which I would like to thank them wholeheartedly.
2002 was also the year in which Alzheimer Europe redefined its priorities. After an extensive survey of our member organisations on their evaluation of past projects and their expectations for the future, Alzheimer Europe set up a working group consisting of Pekka Laine, Harry Cayton, Jean Georges and myself to define a business plan for the organisation setting out clear priorities and programmes for the organisation for the next five years.
The adoption of our new business plan at the Annual General Meeting in Maastricht was undoubtedly the highlight of 2002. The business plan clearly defines the working philosophy of our organisation, which is aimed at enhancing the dignity, respect and self-determination of the person with dementia and his/her family throughout the course of the disease.
This underlying philosophy, coupled with the definition of the priorities in the five year business plan and the corresponding budgets will contribute to a clear vision of the organisation and I am confident that we will be able to achieve the goals set out in the business plan over the coming years.
Jacques Selmes van den Bril
Rare forms of dementia
In 2002, Alzheimer Europe was informed by the European Commission that its project on rare forms of dementia had been approved for funding. The project will consist in establishing a database which will include the following information on rare forms of dementia: disease name, synonyms, description of the disorder, symptoms, causes, epidemiological data, treatment, clinical trials, diagnostic procedures and sources for further information.
For this project, which started on 1 August 2002, Alzheimer Europe is happy to count on the expertise and advice of a working group consisting of:
- Marco BLOM, Stichting Alzheimer Nederland, Bunnik, Netherlands
- André DELACOURTE, INSERM, Lille, France
- Clive EVERS, Alzheimer's Society, London, United Kingdom
- Alexander KURZ, Psychiatrische Klinik der TU München, Munich, Germany
- Kurt JELLINGER, Ludwig Boltzmann Institute of Clinical Neurobiology, Vienna, Austria
OPDAL – OPtimisation of the Diagnosis of ALzheimer’s disease and related disorders
In 2002, Alzheimer Europe and ten of its member organisations took part in a survey on the conditions of the disclosure of a diagnosis of Alzheimer’s disease which was supported by a grant from Janssen-Cilag.
The findings were presented in a satellite symposium at the Alzheimer Europe Conference in Maastricht in which Gunhild Waldemar (Denmark), Micheline Selmes (Spain), Christian Derouesné (France) and Anthony Bayer (United Kingdom) took part.
The survey showed that a diagnosis is still made at a later stage of the disease. The delay between the moment when the family perceives that something is wrong and the confirmation of a diagnosis is reported to be over a year in 45% of the survey participants. Furthermore, nearly half of the respondents said that the person with dementia would have been unable to understand the full implications of the diagnosis, which similarly suggests that the diagnosis was made at a later stage.
The survey also highlighted the lack of information provided by health professionals to carers and families. Carers clearly expressed their opinion that information on the disease provided by professionals was not sufficient and regretted in particular the small amount of time professionals dedicated to explanations.
Alzheimer Europe Intranet
Thanks to the support of the Pfizer Foundation, Alzheimer Europe was able to further develop its Intranet site, by:
- Updating and linking the Intranet database on Alzheimer associations to the website of the organisation
- Updating and linking the Intranet database on Events to the website of the organisation
- Developing a new access database for all publications, documents and videos of relevance to the member organisations, which can be linked and searched on the Intranet.
- Allowing the organisation to share all internal documents (such as minutes, rules and regulations and other documents) directly with all the member organisations.
- Developing a project database allowing member organisations to share information on relevant projects they have carried out.
- Developing a links database with information on other websites of interest for people with dementia and their carers, which can be consulted on the Internet and Intranet sites of the organisation.
- Developing a user-friendly chat and discussion forum for use by members of Alzheimer Europe.
Pharmaceutical Review – Information to patients
Alzheimer Europe closely followed the discussions within the European Commission and the European Parliament on the proposed changes of the European Union’s pharmaceutical review. In May 2002, Alzheimer Europe joined a number of other organisations in signing a declaration outlining the views of patients on the proposed changes.
The declaration stated the following principles:
European patient groups believe that ALL patients, no matter their condition, background or nationality, have a fundamental and legitimate human right of access to all kinds of information about their health, medical conditions and the availability of treatments including knowledge of the best available management for their disease. It is a question of solidarity, equity and patients’ rights.
We would draw attention to, and agree with the assertion in the Commission’s legal text that patients have a “legitimate need” for information.
From our perspective EU patients/citizens need factually accurate, reliable, easily understandable information to be able to make informed decisions. They need to understand their condition and do want to receive information on treatments available.
As patients, we welcome information from different sources including the pharmaceutical industry, provided they meet the above-mentioned criteria, the ownership of the source is clearly identified and agreed safeguards are in place.
In October 2002, before the first reading of the review in the European Parliament, Alzheimer Europe joined the call of the European Federation of Neurological Associations warning against further restrictions on access to information for patients.
In this call, EFNA expressed its concern that some amendments proposed by MEPs would introduce a new definition for advertising of medicinal products that would ultimately threaten the information campaigns run by patient organisations. In addition, such steps would further widen the information gap between those people who have already access to the Internet and are able to read English and those for whom no information is available in their mother tongue and who have no access to the Internet.
Council of Europe Draft Protocol on Biomedical research
In October 2001, Alzheimer Europe was consulted by the Council of Europe on the Draft Additional Protocol of the Council of Europe on Biomedical Research.
On 14 January 2002, Alzheimer Europe forwarded its provisional position on the participation of people with dementia in research to the Council of Europe. While welcoming most of the clauses of the draft protocol, Alzheimer Europe questioned the usefulness of allowing research with people with dementia without that research having a possible benefit for the research participant.
The organisation stressed that such research should be possible in the early stages of the disease when people with dementia may still be able to express their consent and also in the presence of advance directives in which people with dementia had expressed their willingness to take part in such research.
European Alzheimer’s Disease Consortium (EADC)
In April 2002, Jean Georges, Executive Director of Alzheimer Europe met with Professors Bruno Vellas and Bengt Winblad and Emma Renish MD from the European Alzheimer’s Disease Consortium (EADC).
This meeting took place at the fringe of the Geneva Springfield Symposium and was dedicated to exploring ways of establishing closer links between the European umbrella organisation of Alzheimer associations and the European research community.
The idea that Alzheimer Europe could be an important actor for the dissemination of research results to people with dementia and carers was welcomed and the researchers of the EADC accepted the possibility of acting as a scientific advisory board to Alzheimer Europe. Furthermore, the possibility of jointly presenting an interest for a centre of excellence under the sixth research framework programme was also discussed.
European Federation of Neurological Associations (EFNA)
Alzheimer Europe continued to be an active member of the European Federation of Neurological Associations and took part in a number of initiatives organised by the association, such as its public relations workshop on 13 June 2003.
A new EFNA Board was elected at the Annual General Meeting of the organisation in Vienna on 27 October 2002. At the first meeting of the new Board, Jean Georges, Executive Director of Alzheimer Europe, was elected as Secretary General of EFNA. The other positions were filled as follows:
- Chairperson: Mary Baker
- Vice-Chairperson: Audrey Craven
- Treasurer: Alistair Newton
- Member at Large: Hilkka Karkkainen
European Patients’ Forum
Alzheimer Europe was actively involved in a number of initiatives dedicated to creating a common voice for patients’ and carers’ organisations in Europe.
Thus, the organisation was represented at a meeting organised by the European Commission on 18 July 2002, at which the organisations agreed on principle to the creation of a European Patients’ Forum and set out the following objectives:
- To facilitate an open and inclusive Patients Forum enabling ALL pan European patient groups to exchange information and points of view in the area of EU Health Policy and all other EU initiatives of interest or concern to patients.
- To share health experiences and examples of good practice in order to strengthen the role and voice of European Patients Organisations
- To offer external stakeholder views in the European health care debate an independent patient group resource.
- To provide a forum to patients organisations to develop common positions on European health policy issues and to lobby for the views of patients organisations giving them a central position in the provision of health care in Europe.
- To become a first point of reference for the European Commission and other European institutions when seeking opinions of patients and when seeking to consult with patient groups.
- To co operate in the formation of joint projects aimed at improving health outcomes and the quality of life of European patients.
The organisations present also discussed a number of criteria that patient organisations should fulfil in order to become full members of the Forum. By and large, the organisations accepted the criteria that had been developed by Alzheimer Europe and that were presented at the meeting by its Executive Director, Jean Georges, namely:
- Legitimacy: European patients organisations should have statutes registered in one of the member states of the European Union. In case the organisation is not registered in an EU Member State, additional information needs to be provided demonstrating EU focus and activities.
- As regards representation: European patients organisations should have members in more than half of the member states of the European Union.
- Democracy :European patients organizations should have governing bodies which are elected by their members.
- Accountability: Statements and opinions of European patients organizations should reflect the views and opinions of its membership and consultations procedures with the membership should be put in place
- Transparency : European patients organizations should disclose their recourses of funding and publish their audited financial accounts.
In November 2002, a second meeting of patient organisations (including Alzheimer Europe) was organised to continue the discussions on the creation of a European Patients’ Forum.
The organisations present reiterated their commitment towards the creation of such a Forum, which would allow patient organisations to share their experiences and to develop joint positions towards the European institutions.
Furthermore, draft statutes and rules and regulations were discussed which should be formally adopted at the launch meeting of the European Patients’ Forum in January 2003.
European Federation of Pharmaceutical Industries and Associations (EFPIA)
Alzheimer Europe continued its active involvement in the EFPIA think tank which brings together representatives of pharmaceutical companies and of patients’ organisations to discuss European issues of interest to these two stakeholders in the healthcare debate.
In particular, the think tank discussed the respective views of patients and industry on the proposed Commission review of the EU pharmaceutical legislation and in particular the provisions with regard to information to patients.
Annual Conference: “Commitment to care”
From 2 to 4 June 2002, Stichting Alzheimer Nederland hosted the 12th Alzheimer Europe Conference in Maastricht under the title “Commitment to care”
Researchers and representatives of Alzheimer associations from a great number of European countries used the opportunity to exchange ideas and experiences. The first day was dedicated to the Annual General Meeting of Alzheimer Europe and useful workshops for staff and volunteers of Alzheimer associations. While this meeting served mainly to discuss and adopt the new business plan of the organisation, it was also the occasion for the elections of the new Board of the organisation.
The Annual General Meeting unanimously adopted the proposal of the newly elected Board and nominated Jacques Selmes (Spain) as its new Chairperson, Gabriella Salvini (Italy) as Vice-Chairperson, Maurice O'Connell (Ireland) as Honorary Secretary and Pekka Laine (Finland) as Honorary Treasurer.
Other members of the Board are: Ad Adriaansen (Netherlands), Huguette Drera (France), Gülay Gürvit (Turkey), Sabine Henry (Belgium), Alan Jacques (United Kingdom), Jeannot Krecké (Luxembourg), Alexander Kurz (Germany) and Naja Skovgaard (Denmark).
The Annual General Meeting was followed by the main conference and the next two days gave an overview of interesting research developments in the treatment and care of people with dementia. An undoubted highlight of the instructive conference was a contribution by Peter Ashley from the United Kingdom, who shared his personal experience of having been diagnosed and living with Lewy Body Dementia. His presentation reminded all present of the need to listen to and include people with dementia in the activities of Alzheimer associations, as well as in policy and service development.
The Alzheimer Europe Business Plan
In 2001, a working group (consisting of Jacques Selmes, Harry Cayton, Pekka Laine, Jean Georges) was set up to develop a business plan for the organisation. This group met several times in 2002 and consulted with the members to ensure that the proposed priorities of the business plan coincide with their expectations.
At its Annual General Meeting in Maastricht on 2 June 2002, Alzheimer Europe adopted the business plan developed by the working group. This business plan, which covers the activities of the organisation from 2002 to 2006, sets out three main core objectives for Alzheimer Europe, namely:
- To improve the information exchange between Alzheimer Europe, its member organisations and European structures,
- To develop policy statements and
- To represent the views of people with dementia and their carers.
The mission statement resulting from these three core objectives defines the role of Alzheimer Europe as 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”
The business plan also clearly sets out the main aim of the organisation which is “to enhance the dignity, respect and self-determination of the person with dementia and his/her family throughout the course of the disease”
Based on this main claim, the business plan sets out five programmes:
- to ensure people with dementia and their carers are referred to Alzheimer associations when receiving a diagnosis (No diagnosis of Alzheimer’s disease should be disclosed without the address of an Alzheimer or dementia association),
- to promote the autonomy of people with dementia through the right to an early diagnosis and the recognition of advance directives (Every person with Alzheimer’s disease in an early stage should be informed about the possibility of legally expressing his/her wills for the future),
- to improve the support and counselling of carers of people with dementia at the onset of the disease (No diagnosis of Alzheimer’s disease without access for the fanily to information, support and counselling),
- to promote quality of care at home (People with dementia and their carers have the right to lead their lives as normally as possible) and
- to promote the dignity and autonomy of people with dementia at the end of their lives (A consensual approach to end-of-life issues is clearly needed).
Last Updated: Tuesday 14 July 2009