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Annual Report 2001

Annual Reports


Preface

Since this is my last year as Chairperson of Alzheimer Europe, I wanted to take the opportunity of this Annual Report to briefly look back over the past five years and to highlight some of the changes, which the organisation has undergone.

The organisation has grown considerably in membership, in its activities and also on a financial level. Thus Alzheimer Europe now counts 31 member organisations in 26 European countries, with 10 new organisations having joined the association in the past five years.

Equally, the number of projects carried out in this time is truly impressive. Our Care Manual and Children’s book have been published in seven languages and have helped our organisations in providing relevant information to carers and grandchildren of people with dementia. For the first time, an organisation carried out an inventory of all legislation affecting the daily lives of people with dementia, thus allowing a comprehensive comparison of how the legal rights of people with dementia are respected in the member countries of the European Union.

Apart from these very useful services for its member organisations, Alzheimer Europe has also taken on a life of its own. As a privileged partner of the European institutions and a consultative organisation of the Council of Europe, the association has been called upon to develop consensual positions on behalf of its member organisation and to defend the interests of people with dementia and their carers towards these European bodies.

From a financial point of view, the organisation has also grown considerably. In 1995, the organisation had an annual income of some 15,000 EUR, which resulted exclusively from the fees of the member organisations. This year, Alzheimer Europe had an income of over 500,000 EUR from a variety of sources, such as European subsidies, corporate sponsorship, donations or the sales of our publications.

Looking back therefore, I would like to thank the dedicated staff of Alzheimer Europe as well as the contributions by our Board members and all our member organisation who made this development possible. From a financial point of view, I would also like to thank Aventis, Janssen-Cilag and Pfizer for their continued support, as well as the Luxembourg Association and through them the Luxembourg Ministry for Family. Without their support, Alzheimer Europe would not have been able to look back on such a successful year.

I am confident that the growth of Alzheimer Europe will continue in the coming years and I am particularly happy that in 2001 we started the development of a new business plan which will set out new and clear priorities for the future work of the organisation.

But 2001 was not only the year when we discussed the future direction of Alzheimer Europe. We were again very successful in carrying out a European project, Equality in the Provision of Care at Home (EPOCH), which provided us with useful information about the different needs and expectations of male and female carers of people with dementia. We continued to be a voice for people with dementia and their carers by developing consensual positions on the participation of people with dementia in clinical trials and in research, as well as on the use of genetic test results by the insurance industry.

Alzheimer Europe is now a recognised player and our involvement and contribution to the development of the European Federation of Neurological Associations or the creation of a European Patients’ Forum show how far the organisation has come.

In 2001, we were also greatly honoured that H.M. Queen Silvia of Sweden accepted the very first award created by Alzheimer Europe for outstanding services for people with dementia and their carers. The ceremony in which Britt Ekland presented the award to H.M. Queen Silvia was most definitely a highlight of last year’s activities. In her acceptance speech, H.M. Queen Silvia shared her personal experience of caring for a loved one with Alzheimer’s disease with us. Her dedication and her contributions to the work of Alzheimer associations in Sweden and throughout Europe serve as an example to all of us.

I am therefore fully confident that Alzheimer Europe will continue to grow and develop and I wish the new Chairperson and Board of the organisation continued success.

Jeannot Krecké
Chairperson


European projects

Due to a discontinuation of funding of specific projects for “people suffering from neurodegenerative diseases” by the European Commission, Alzheimer Europe was unable to secure funding on a European level in 2001. Nevertheless, the organisation finalised its work on its project on equality in the provision of care at home, which was funded under the European programme for measures to achieve equality between men and women and continued the dissemination of the results of previous European projects.

Equality in the Provision Of Care at Home (EPOCH)

Alzheimer Europe 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.

The project was carried out in close collaboration with participants from our member organisations in Belgium, Denmark, Germany, Iceland, Ireland, Italy, Luxembourg, Norway and Spain, as well as with the help from women’s expert Viviane Ecker from Luxembourg.

An extensive survey was developed and answered by 585 carers in the participating countries. The survey aimed at discovering in how far factors such as availability, perceived suitability, willingness, social pressure, support from others and sense of duty influence people to take on the task of caring.

The filled in questionnaires were evaluated in 2001 and at the same time, the organisation carried out an intensive literature search in the field and aimed at identifying good practices in the countries covered by the project.

The findings of the survey, a list of good practices, as well as the resulting recommendations were published in a report which was published in 2001 and which can be ordered from the organisation.

Dissemination of previous European projects

In 2001, the organisation also continued its work in disseminating the results of previous European projects.

In particular, thanks to the collaboration between the French-speaking member organisations of Alzheimer Europe (France, Belgium, Luxembourg and Switzerland), the organisation was able to produce the French edition of the Care Manual. This publication provides practical tips for carers of people with dementia, general information on Alzheimer’s disease and other forms of dementia, as well as information on legal and social help that is available in the four countries. With this edition, the Care Manual developed by Alzheimer Europe has now been published in 7 languages, namely Danish, French, German, Greek, Italian, Portuguese and Turkish.

The Luxembourg Ministry of Education again supported the publication of our Children's book and some 5,000 copies of the German edition were distributed to and used by ten-year-old school children. Furthermore, the Danish, Flemish and Portuguese editions of the Care Manual were also published in 2001, thus bringing the number of languages in which the Children’s book is now available to 7 (Danish, Flemish, French, German, Greek, Italian and Portuguese).

Finally, in 2001 the organisation disseminated the recommendations on the legal rights of people with dementia, which can be ordered in one of the official languages of the European Union from the Alzheimer Europe secretariat.


European devolpments

As in previous years, Alzheimer Europe further developed its relationships with the European institutions (Commission and Parliament), as well as with the Council of Europe. More and more, the organisation was called upon to comment on proposed legislation by the European institutions or on draft protocols of the Council of Europe. The organisation was able to strengthen its public affairs role thanks to continued funding from pharmaceutical companies (Aventis, Janssen-Cilag and Pfizer).

European Union

Public Health Programme

Throughout 2001, the European Parliament, the Commission and the Council of Ministers discussed the adoption of the new public health framework programme of the European Union. Together with its member organisations, Alzheimer Europe launched a letter writing campaign to members of the European Parliament stressing the importance of addressing the problem of growing numbers of people affected by neurodegenerative diseases and in particular Alzheimer’s disease.

The organisation was therefore heartened by the decision of the Environment and Public Health Committee of the European Parliament to include neurodegenerative diseases amongst the priority areas that the new framework programme should address. Unfortunately, these positive amendments were not retained by the Commission and Council of Ministers.

At the second reading 12 December 2001, the European Parliament adopted the public health programme. Alzheimer Europe regretted that no majority was found for an amendment, which would have allowed European public health organisations to be funded through the programme, but nevertheless welcomed the possibility for European NGOs to have specific projects funded by the programme.

Equality of access to care and treatment

In order to raise the profile of Alzheimer Europe and the awareness of the relevance of dementia among the Members of the European Parliament, the association organised a third Forum on equality of access to care and treatment on 17 March 2001.

This public event in the European Parliament in Brussels aimed at highlighting the existing divergences between European countries when it comes to access to care and treatment for people with dementia. Apart from focusing on the differences in service provision and availability of treatment options, the forum also looked at varying attitudes in addressing the needs of specific groups of carers, such as male carers, carers of younger people with dementia, gay and lesbian carers and carers from ethnic minorities.

The proceedings of this event were published in 2001 and are available from the Alzheimer Europe secretariat. Alzheimer Europe is particularly grateful to the companies, which helped to finance this important event, as well as to Karla Peijs, MEP for her invaluable support in organising this event in the European Parliament.

Clinical trials

The European Parliament discussed the adoption of the clinical trials directive in 2000 and 2001. Alzheimer Europe was closely following the discussions, as the participation of people unable to consent was also covered in the directive. Since the Environment and Public Health Committee of the European Parliament adopted specific amendments to address this issue, Alzheimer Europe felt obliged to consult its member organisations on an issue of great importance to people with dementia.

The consultation of member organisations allowed the Board of Alzheimer Europe to develop a consensual position which supported the amendments of the European Parliament, in clearly limiting the participation of people unable to consent to those clinical trials where these may expect a direct benefit for their situation. Alzheimer Europe was also grateful to Dr. Peter Liese, the rapporteur of the clinical trials directive for attending the Alzheimer Europe Forum on 7 March 2001 and presenting the views of the European Parliament to the assembled members of the organisation.

The position paper on the participation of people with dementia in clinical trials is annexed to this Annual Report.

Genetics

Alzheimer Europe also closely followed the work of the Temporary Committee on Human Genetics of the European Parliament, as a number of issues such as genetic testing and stem cell research are also of importance to people with dementia.

As a result, Alzheimer Europe launched a consultation process amongst its members to develop a position on both genetic testing and stem cell research. While a consensus was quickly found for our position on genetic testing, this was not the case for stem cell research and a position on this subject should be developed in 2002.

In its position on genetic testing, the organisation argues against the use of genetic test results by the insurance sector and by employers, as the use of such results is currently unjustifiable and premature. In the opinion of Alzheimer Europe, such use of test results would lead to further social exclusion of people with dementia and their carers. Furthermore, the eventual use of genetic test material by the insurance industry might deter people from actually taking genetic tests or participating in genetic research.

On 5 November 2001, Alzheimer Europe presented its position to Mr. Robert Goebbels, MEP, the Chairperson of the Temporary Committee on Human Genetics. Furthermore, the association organised a public forum on the “Genetics of Alzheimer’s disease” on 17 December 2001 in the European Parliament.

The position paper on genetic testing can be found as an annex in this Annual Report.

Council of Europe

Alzheimer Europe enjoys consultative status with the Council of Europe and participated actively in the quarterly NGO meetings, which were held in Strasbourg and in particular the “Health” sub-grouping. At the same time, Alzheimer Europe became involved in specific working groups set up by other NGOs with consultative status and developed a response to the Draft Additional Protocol on Biomedical Research.

Palliative Care

Alzheimer Europe became active in the ad hoc working group on palliative care at home. Issues such as obstacles to maintaining a terminally ill person at home, how to avoid exhaustion of family carers, the efficacy of palliative care networks and reasons for readmission to hospital were considered relevant.

To study these questions, a questionnaire targeted at general practitioners was devised, based on the questionnaire, which had already been successfully piloted by the European Association for Palliative Care (EAPC) in the Strasbourg area of France.

Alzheimer Europe and some of its member organisations assisted in the ad hoc distribution of questionnaires to general practitioners. The organisation also put the questionnaire on its Internet site. The responses received were forwarded to the EAPC for evaluation.

Psychotherapy and human rights

In 2000, the Council of Europe produced a White Paper on the “protection of the human rights and dignity of people suffering from mental disorder, especially those placed as involuntary patients in a psychiatric establishment.” This document was fairly extensive in that it covered mental disorders in general, as well as internment on civil as well as criminal grounds and Alzheimer Europe was one of the organisations, which responded to the consultation document.

In 2001, the European Association for Psychotherapy wanted to further examine some of the questions of the white paper and particularly the issue of access to psychotherapeutic treatment. An ad hoc interdisciplinary group was therefore set up in which Alzheimer Europe has agreed to collaborate.

Additional Protocol on Biomedical Research

In 2001, the Steering Committee on Bioethics (CDBI) of the Council of Europe finalised its Draft Additional Protocol to the Convention on Human Rights, on Biomedical Research and declassified the document for consultation purposes.

Alzheimer Europe received the document and was asked to comment. The organisation therefore developed a position paper on the issue of the participation of people with dementia in research, which was adopted by the Board of Alzheimer Europe on 16 December 2001 and forwarded to the services responsible within the Council of Europe.


Networking

As in previous years, Alzheimer Europe continued the development of closer links with other organisations active on a European level. We were particularly encouraged by the growing co-operation between researchers in the framework of the European Alzheimer’s Disease Consortium and their desire to co-operate more closely with Alzheimer Europe.

Furthermore, Alzheimer Europe took part in various activities organised by the European Federation of Neurological Societies (EFNS) and the European Federation of Pharmaceutical Industries and Associations (EFPIA).

European Alzheimer's Disease Consortium (EADC)

In 2001, a number of researchers active in the field of Alzheimer’s disease examined ways of co-operating more closely on a European level and created the European Alzheimer’s Disease Consortium. Under the leadership of Prof. Bruno Vellas from Toulouse (France) and Prof. Bengt Winblad from the Karolinska Institute in Stockholm (Sweden), these researchers decided on some priority areas for research in Europe and examined the possibility of securing funding under the Research and Development Framework Programme of the European Union.

Alzheimer Europe has been closely associated with these centres and will be included as a member in a number of projects that the EADC is hoping to develop in 2002. Alzheimer Europe has also developed and will continue to maintain the Internet site of the EADC.

European Federation of Neurological Association (EFNA)

Alzheimer Europe has been among the founding members of the European Federation of Neurological Associations, an organisation aiming at improving the quality of life of those affected by neurological disorders. At its second Annual General Meeting in London, Jean Georges, the Executive Director of Alzheimer Europe was elected to the EFNA Board.

EFNA was officially launched and presented in the European Parliament, thus further raising the visibility of people living with neurological disorders. Commissioner Byrne and a number of supportive Members of the European Parliament were present at this official launch on 23 October 2001 in Strasbourg.

European Patients' Forum

Aware of the growing number of political developments on a European level, which may directly impact on the lives of patients, a number of patient organisations met on several occasions in order to discuss how best to strengthen the voice of patients on a European level. Alzheimer Europe has been among the organisation, which discussed the possibility of creating a European Patients’ Forum, which would aim at exchanging information between patient organisations on relevant European developments and which should ultimately become an important partner for European institutions for consultation purposes.

Though the Forum has not been formally launched, a number of organisations have agreed to work more closely together and in 2002, Alzheimer Europe will continue to work towards the establishment of an independent and inclusive Patients’ Forum.


Other Activities

Annual conference "Across the old Borders"

The 11th Alzheimer Europe Conference “Across the old borders” took place in Bucharest (Romania) from 9 to 12 June 2001. The conference was an ideal opportunity for the over 500 participants to exchange information and experiences and to raise the profile of this disease in Romania.

Not only did the conference bring together delegates from across a once-divided continent, but also representatives from various professional backgrounds, from carers of people with dementia and people involved in Alzheimer associations to nurses, professional carers and medical professionals involved in the care and treatment of people with dementia.

The success of the meeting was greatly due to the organisational skills and dedication of the members of the Romanian Alzheimer’s Society and we would like to take this occasion to pay special tribute to them.

Alzheimer Europe Award

In 2001, Alzheimer Europe for the first time presented the “Alzheimer Europe Award for outstanding services for people with dementia”. We were particularly honoured that H.M. Queen Silvia accepted the award, which was presented to her by Britt Ekland in the framework of the Alzheimer Europe Forum in the European Parliament on 7 March 2001.

With this award, Alzheimer Europe wanted to honour the contributions of H.M. Queen Silvia to raising the awareness of dementia in Sweden and throughout Europe by speaking about her own personal experience of caring for a loved one with Alzheimer’s disease, by supporting the work of the Swedish Alzheimer’s associations and by founding a special training programme for nurses specialised in the dementia field.

 

 
 

Last Updated: mardi 14 juillet 2009

 

 
 

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