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Alzheimer Europe FY2010 [AE_FY2010] [20093201] - Operating Grant
Mission and vision of the operating grant holder

Alzheimer Europe defines its mission as "changing perceptions, practice and policy in order to improve the access of people with dementia and their carers to treatment option and care services".

To achieve its mission, Alzheimer Europe has defined the following six objectives in its Strategic Plan which covers the period of 2006-2010:
1. Representing the interests of people with dementia and their carers,
2. Involving and supporting national Alzheimer associations,
3. Improving the information exchange between AE, its members and other stakeholders,
4. Promoting best practice through the development of comparative surveys,
5. Jointly developing policy with its member organisations,
6. Developing strategic partnerships with other actors in the field.

On the basis of these strategic objectives, Alzheimer Europe develops annual work plans outlining the priority areas and projects of the organisation.

Strategic objectives and specific activities

In line with the strategic objectives of the organisation, AE carried out a number of key initiatives in the past years. AE:
1. developed close ties with the different European institutions and created a European Alzheimer`s Alliance comprised of Members of the European Parliament and actively participated in the preparations of the Commission Mental Health Conference and the French Presidency Conference on Alzheimer`s disease,
2. contributed to European policy discussions such as information to patients, cross-border health care, the Commission Transparency Initiative and other consultations,
3. jointly developed with its member organisations the Paris Declaration which outlines the political priorities of the European Alzheimer movement,
4. organised annual conferences which were attended by between 300 and 600 participants from different professional backgrounds and countries,
5. actively communicated with its membership, European institutions and interested parties (~3,700 contacts on AE mailing list) on its activities, European and national policy developments and scientific news through its monthly e-mail newsletter and its Dementia in Europe magazine,
6. promoted a rights based approach to the care of people with dementia through projects focused on the legal rights of people with dementia and in depth coverage of such issues as the use of advance directives by people with dementia or end-of-life care,
7. actively collaborated with other actors in the field,

From 2006-2008, AE also coordinated a three year Commission financed project entitled "European Collaboration on Dementia - EuroCoDe" which resulted in:
1. a report on the socio-economic impact of dementia,
2. European guidelines and quality indicators on paycho-social interventions,
3. a report on risk factors and prevention,
4. a review of the prevalence of dementia and new consensual prevalence rates,
5. a European guidelines on the diagnosis and treatment of dementia and
6. recommendations and examples of good practice in the provision of social support to people with dementia and their carers.

In 2009, the organisation started the implementation phase of the Dementia Ethics Network thanks to the supports of the Germany Ministry of Health, carried out an inventory of laws in 31 European countries with regard to health care decision making, continued its work with the European Alzheimer`s Alliance (group of MEPs with an interest in dementia) and focused on the redevelopments of its website.

For 2010, apart from the actions described on page 8, the organisation will also continue its public affairs activities with its work with the Alzheimer`s Alliance and the publication of its Dementia in Europe Magazines.

Expected outcomes

Alzheimer Europe identified six key activities and projects for its 2010 work programme. These activities of the organisation are focused on the promotion of mental health and the fight against stigma identified in point of the Commission Work Plan. The organisation also focuses on the priority on mental health of older people of the European Pact for Mental Health and Well-being and its priorities of promoting the active inclusion of people with mental health problems in society and taking measures to support carers. AE will do so by establishing a network to support carers in dealing with ethical issues arising in the care of people with dementia, identifying ways of promoting the active participation of people with dementia and carrying out an inventory of laws on guardianship and proxy-decision making decision in the Member States of the European Union.
1. Dementia Ethics Network
The Dementia Ethics Network has three key aims:
- collecting ethical positions and recommendations developed by different professional and/or medical organisations and thus becoming a reference on ethical issues in the care and treatment of people with dementia,
- providing in-depth coverage of specific ethical dilemmas and developing, where possible consensual positions on such ethical issues,
- collecting requests of individual carers and health care professionals faced with ethical dilemmas and providing guidance when possible.
In 2010, the network will focus on the development of a searchable database (MS: M3), the organisation of two ethics workshops (MS: M6+M12), an extensive literature review on the ethics of dementia research and new technologies and the development of a report on the ethics of new technologies (MS: M12).
2. Legal Rights Project
Based on its previous European Commission financed project Lawnet, Alzheimer Europe will update the national reports on the guardianship systems of the previously studied 15 Member States of the European Union and develop reports for those countries not previously studied (10 new Member States and Iceland, Norway, Switzerland and Turkey). These comparative reports (MS: M12)will be published with the 2010 Dementia in Europe Yearbook of the organisation.
3. Involving people with dementia
Alzheimer Europe will carry out a survey (MS: M6) of its member organisations on how people with dementia are involved in national Alzheimer associations and their activities, as well as in policy developments on a national level and develop recommendations (MS: M9) on how best to promote the active involvement of people with dementia.
4. European Dementia Observatory
Alzheimer Europe will continue to gather and disseminate all information on dementia at both a European and national level and will focus on policy developments, such as the implementation of the European Commission Alzheimer`s initiative and national dementia strategies and plans, as well as scientific developments with regard to new treatments and new care approaches.
5. 20th Alzheimer Europe Conference in Luxembourg
Under the theme "Facing dementia together", Alzheimer Europe will focus on the importance of partnerships which are necessary to improve the quality of life of people with dementia and their carers and address the stigma attached to this disease. The conference will be held in Luxembourg (MS: M9) and it is hoped to attract 400 participants to the conference in line with the participation of previous conferences.
6. Organisational issues
A number of organisational issues will also be addressed in the 2010 Work Plan to improve the organisation`s activities in the future, such as the development of a new strategic plan (2011-2015) based on the results of a membership satisfaction survey, continued membership development and contacts with Alzheimer association in countries not currently covered by the organisation, the development of strategic partnerships with other organisations active in the field and the organisation of a European Dementia Summit, a statutory review and the development of a financial diversification strategy.

Start date: 01/01/2010
End date: 01/01/2011
Duration: 12 month(s)
Current status: Finalised
Programme title: Second Programme of Community action in the Field of Health 2008-2013
EC Contribution: € 250 000,00
Portfolio: Interest groups