Annual Report 2000
I ended my introduction to the 1999 annual report on a sombre note. At that time, we were confronted with financial difficulties due to a steady decline in European funding and a substantial budgetary deficit as a consequence.
For this reason, I am particularly glad to be able to present this year’s report on a much more optimistic note. In 2000, we were able to identify new funding for the organisation and I would like to thank in particular our Luxembourg member organisation, Association Luxembourg Alzheimer, and through them, the Luxembourg Ministry for Family for their financial support.
Also, we were able to gather the representatives of four pharmaceutical companies (Aventis, Janssen-Cilag, Novartis and Pfizer) around one table and to convince them of the importance of a strong European organisation to defend the interests of people with dementia and their carers.
This combined financial support allowed us to improve the image of Alzheimer Europe and to raise the issue of dementia within the European institutions and the Council of Europe. The continuation of our quarterly newsletter further contributed to better inform decision makers about the activities of our organisation, as well as our member organisations about relevant European developments.
While work continued on our various European projects, such as our Intranet and our study on equality in the provision of care at home (EPOCH), the highlight of last year was undoubtedly our work on the promotion of the legal rights and protection of people with dementia.
The work carried out under the two Lawnet projects is truly impressive. It is the first time, that all relevant legislation affecting people with dementia has been gathered and translated, allowing researchers and associations of people with disabilities to compare the various national systems.
Also, our attempt to develop recommendations on how to improve the rights of people with dementia proved highly successful. The consensus reached between national associations was truly astounding considering the differing legal systems, but also the different roles of doctors and families in the various countries involved.
For me, the adoption of the recommendations by the Annual General Meeting of the organisation proved how far Alzheimer Europe had matured beyond the simple exchange of information and experiences between national organisations. These recommendations will form the basis for effective and truly representative actions by Alzheimer Europe to make the views of people with dementia and their carers heard in Europe.
As in the past years, Alzheimer Europe has been active in developing projects, which could be carried out with the support of the European Commission. The projects which we worked on in 2000 fall under three different Commission programmes, namely:
- Actions in favour of people suffering from neurodegenerative diseases, more particularly Alzheimer type (DAT) and related disorders,and their (informal) carers;
- Preparatory measures combating and preventing discrimination;
- Measures to achieve equality between men and women.
The first Lawnet project was finalised in 1999 and consisted of an extensive inventory of all legislation affecting people with dementia and their carers. This project made us aware of the differences between the various national systems and the importance of developing recommendations on how to promote the legal rights and protection of people with dementia.
Thanks to continued funding from the European Commission, an expert group was set up with representatives from our member organisations in Austria, Finland, Greece, Portugal, Spain and the United Kingdom (Scotland). In four meetings, they discussed at length possible recommendations and were able to reach a very broad consensus on most of the discussed issues. We were also happy to have a representative of the Council of Europe present at the various meetings organised by Alzheimer Europe.
On 23 September 2000, the 2nd Forum of Alzheimer Europe was dedicated to the presentation of the work carried out by the expert group. The three main round-table discussions focused on guardianship systems, restrictions of liberty of movement and bioethical issues, the main subjects studied by the expert group. The various presentations of the meeting were published and the proceedings can be ordered from the Alzheimer Europe office.
As a next step, the expert group presented its work at the Annual General Meeting of the organisation in Munich on 15 October 2000. After a discussion of the various recommendations, the represented organisations formally adopted the recommendations with Norway and Sweden abstaining and the Alzheimer’s Society of the United Kingdom (England, Northern Ireland and Wales) expressing a reservation with regard to some of the recommendations.
On the whole, the project proved highly successful, as it constitutes the first attempt by a European organisation to reach a consensus on much debated issues. As a result of the work, the following documents can be ordered from Alzheimer Europe:
- Recommendations on how to improve the legal rights and protection of adults with incapacity due to dementia;
- Guidelines on the use of various measures designed to restrict liberty of movement;
- Advance directive (living will).
In 2000, Alzheimer Europe also continued the development of its Intranet site. A steering group consisting of representatives of Alzheimer Europe’s member organisations from Finland, Germany, Ireland, Luxembourg, the Netherlands, Romania and the United Kingdom (England, Northern Ireland and Wales) met on four occasions to test and improve the various sections of the Intranet.
The Intranet attempts to increase the information exchange between Alzheimer Europe and its national associations, but also between national associations themselves. It has also been successfully used in co-ordinating other European projects run by Alzheimer Europe.
The various sections provide common databases on publications on dementia, on relevant conferences and meetings and on useful addresses, as well as communication tools, such as chat and discussion forums.
Over the coming years, this tool will be further developed in order to provide national Alzheimer associations with an updated and easy-to-use information source.
Equality in the Provision of Care at Home (EPOCH)
In 2000, Alzheimer Europe also received funding from the Social Affairs and Employment DG of the European Commission to investigate the gender imbalance related to the task of caring for someone with dementia.
This project, which will be finalised in 2001, will be carried out in close collaboration with participants from our member organisations in Belgium, Denmark, Germany, Iceland, Ireland, Italy, Luxembourg, Norway and Spain.
In the course of 2000, an extensive survey was developed which will be distributed in the participating countries in order to discover in how far such factors as availability, perceived suitability, willingness, social pressure, support from others and sense of duty influence people to take on the task of caring. Particular attention will be paid to those areas, where men and women differ in their responses.
The questionnaires will be evaluated in 2001. On the basis of those results, the organisation will produce a report and develop recommendations.
2000 proved to be another year of outreach for the organisation, as Alzheimer Europe succeeded in further strengthening its contacts with the European Commission and the European Parliament, as well as with the Council of Europe.
Thanks to the financial support of four companies (Aventis, Janssen-Cilag, Novartis and Pfizer), Alzheimer Europe was able to dedicate more time to liaise with the various departments of the European Commission, as well as with Members of the European Parliament.
Contacts with the European Commission and European Parliament
In particular, Alzheimer Europe was able to meet with representatives of the Directorate Generals for Employment and Social Affairs, Education, Health and Consumer Protection and Research to discuss the existing funding possibilities and to inform the Commission officials about the activities and projects of Alzheimer Europe.
Similarly, Alzheimer Europe regularly informed the members of the European Parliament Committee on the Environment, Public Health and Consumer Policy of its actions and activities.
The European funding crisis and the public health programme
From a financial point of view, 2000 constituted a difficult moment, since the previous funding of specific Alzheimer projects came to an end. Despite continued support from the European Parliament, the Commission had reallocated the funds to the general health budget line.
Together with all its member organisations, Alzheimer Europe was able to raise awareness of this problem by writing to national health ministers as well as members of the European Parliament. This resulted in a meeting between representatives of Alzheimer Europe (J. Krecké and J. Georges) with Commissioner Byrne and we were particularly grateful for the support that we received from Karla Peijs, MEP and Dana Scallon, MEP at this meeting.
We were also heartened by Commissioner Byrne’s statement, in which he indicated that: “I understand and recognise the valuable and honourable cause your organisation is working for, and the difficulty you have in fund-raising. The Commission is in agreement with you and the European Parliament on the need to improve the quality of life of the persons suffering from Alzheimer’s and related diseases, and of the persons who care for them.”
Furthermore, our organisation was able to gather support from a great number of Members of the European Parliament who insisted that the issue of neuro-degenerative disorders should be more adequately addressed in the new programme of Community action in the field of public health.
Council of Europe
As an NGO with consultative status at the Council of Europe, Alzheimer Europe actively participated in the quarterly NGO meetings which were held in Strasbourg and in particular the “Health” sub-grouping. Furthermore, the organisation is involved in the special working group, which deals with “palliative care”
The organisation also contributed a written response to the Council of Europe’s “White paper on the protection of the human rights and dignity of people suffering from mental disorders, especially those placed as involuntary patients in a psychiatric establishment”
In the framework of its Lawnet project, representatives of the Legal Rights Department of the Council of Europe were able to play an active role, inform the project participants about the work of their organisation, as well as contribute to a better understanding of the various subjects under discussion.
Finally, we were particularly pleased that the 2nd Alzheimer Europe Forum on “The legal rights of people with dementia” in Luxembourg on 23 September 2000 was held under the auspices of Mr. Walter Schwimmer, the Secretary General of the Council of Europe.
As in the previous years, we were active in strengthening our contacts with other European organisations, such as the Platform of European Social NGOs, EurolinkAge and the European Public Health Alliance, of which Alzheimer Europe is a member.
The organisation also took part in various activities organised by the European Federation of Pharmaceutical Industries (EFPIA) and the European Federation of Neurological Societies (EFNS).
European Disability Forum
Alzheimer Europe also continued its involvement within the European Disability Forum, which underwent considerable changes in 2000. Thus the organisation redefined its membership criteria by insisting that member organisations should be administered by people with disabilities or by parents of people with disabilities. We were particularly pleased that we complied with all the new requirements and that we were able to continue as a full member organisation.
European Federation of Neurological Association (EFNA)
Another important development in 2000 was the creation of the European Federation of Neurological Associations. Aware that most people with neurological disorders face similar problems, such as stigma, lack of awareness and limited treatment possibilities, a number of associations met on several occasions in order to create a European platform to defend these interests and to raise awareness of the prevalence of neurological disorders in our societies.
Alzheimer Europe was involved in these discussions from the beginning and we were pleased to be among the founding members of a new organisation, the objectives of which are:
- To improve the quality of life of those affected by neurological disorders;
- To promote rapid and accurate diagnosis, appropriate treatment, rehabilitation and care for people with neurological illness;
- To promote better access to information which is accurate and understandable;
- To promote public awareness and understanding of neurological conditions;
- To eliminate prejudice and stigma associated with neurological diseases;
- To increase priority given to neurology by policy and decision makers and by health care providers.
The 10th Anniversary Meeting of Alzheimer Europe took place in Munich from 12 to 15 October, 2000 and presented a great opportunity for the 600 participants to look back on 10 years of activities of the European Alzheimer movement, to learn of the latest research in care and treatment and to have an insight into what the future might hold for the management of Alzheimer’s disease.
The success of the meeting would have been impossible without the dedication and organisational skills of the “Deutsche Alzheimer Gesellschaft” which we would like to pay a special tribute to.
Workshop on Quality of life in Madrid
In the framework of its co-operation with the pharmaceutical industry, Alzheimer Europe organised a multi-disciplinary workshop on “The quality of life of people with dementia” in Madrid on 4 September 2000. During the one-day meeting, various experts presented their views on the concept of quality of life and the application of this concept to people with dementia.
During the ensuing workshop, participants from Alzheimer associations, policy makers, scientists and representatives of the pharmaceutical industry reached a high degree of consensus and agreed on the usefulness of the concept, as an adequate measurement of quality of life would allow for better evaluation of service provision and treatment efficacy in the field of dementia.
Last Updated: Tuesday 14 July 2009