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Alzheimer Europe - AE FY 2011 [AE _FY2011] [20103208] - 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 options 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.
The development of a new strategic plan for 2011-2015 forms part of the 2010 operating grant.

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.
From 2006-2008, AE also coordinated a three year Commission financed project entitled "European Collaboration on Dementia - EuroCoDe" which resulted in reports on the socio-economic impact of dementia, psycho-social interventions, risk factors and prevention,
the prevalence of dementia, the diagnosis and treatment of dementia and the provision of social support to people with dementia and their carers.
For its 2010 activities, the organisation received an operating grant and inter alia was able to/will work on the development of a European Dementia Ethics Network, carry out an inventory of guardianship legislation and organise its 20th Annual Conference in Luxembourg.

Expected outcomes

Alzheimer Europe identified five key activities and projects for its 2011 work programme which will build on the expected results of its successful 2010 operating grant. These activities are geared towards a collaboration with and support of other European initiatives, such as the Joint Action and Joint Programming on Alzheimer`s disease. In particular, the organisation will carry out the following main activities:

1. The ethics of dementia research
The work on dementia ethics started in 2009 had the aim of collecting and disseminating ethical positions and recommendations, to provide in-depth coverage of specific ethical dilemmas, to develop, where possible consensual positions and recommendations and to collect requests of individual carers and health care professionals and provide guidance where possible. Building on the work carried out in 2010, the focus will be on developing a report on the ethical issues of dementia research (informed consent, representation of people unable to consent, placebo research, genetic testing) whilst at the same time starting a detailed literature review on ethical dilemmas faced by informal carers at home and highlighting the ethical dimension of some of the experiences that carers encounter in their daily lives.

2. Legal Rights Project
Based on the previous European Commission financed project Lawnet and the work carried out in 2009 and 2010 on healthcare decision making and guardianship systems, Alzheimer Europe will update the national reports on the legislation surrounding restrictions of freedom and coercive measures 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 Croatia, Iceland, Norway, Switzerland and Turkey). These comparative reports will be published with the 2011 Dementia in Europe Yearbook.

3. Dissemination of European and national information on dementia
Alzheimer Europe will continue to gather and disseminate all information on dementia at both a European and national level and will collaborate closely with the Joint Action and Joint Programming on Alzheimer`s disease. A focus of the dissemination work will also be on policy developments and the development and implementation of national dementia strategies and Alzheimer`s plans. Scientific developments with regard to new treatments and new care approaches will also be highlighted in AE`s dissemination tools (extensive website and monthly newsletter).

4. Annual General Meeting
The Annual General Meeting of Alzheimer Europe will take place in Warsaw on 6 October 2011. A focus of the meeting will be on the involvement of people with dementia in the activities of Alzheimer associations on a European and national level, as well as outreach activities of interest to emerging associations in Central and Eastern Europe. The Annual General Meeting will take place in conjunction with the 21st Alzheimer Europe Conference to allow participants from member organisations and people with dementia to participate in the two day event.

5. Organisational issues
A number of organisational issues will also be addressed in the 2011 Work Plan to improve the organisation`s activities in the future, in particular the outreach to other organisations active in the field, as well as the implementation of the new strategic plan and financial diversification strategy developed under the 2010 operating grant. The involvement of people with dementia has been identified as a key objective for the organisation and a mechanism for establishing an advisory board consisting of people with dementia will be developed in 2011. Particular attention will need to be paid on how best to support people with dementia to attend working groups set up in the framework of the operating grant and to contribute to the discussion with members at the Annual General Meeting.

Start date: 01/01/2011
End date: 01/01/2012
Duration: 12 month(s)
Current status: Finalised
Programme title: Second Programme of Community action in the Field of Health 2008-2013
EC Contribution: € 200 000,00
Portfolio: Interest groups