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AE_FY2013 [AE_FY2013] [20123204] - Operating Grant
Mission and vision of the operating grant holder

Alzheimer Europe (AE) 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". In addition, the organisation has defined its guiding philosophy as "promoting the autonomy and self-determination of people with dementia and their carers throughout the course of the disease".
To achieve its mission and accomplish its vision, Alzheimer Europe has developed four objectives in its strategic plan (2011-2015) which was developed within the framework of its 2010 Operating Grant:
1. Making dementia a European priority through representing the interests of people with dementia, partnering with European institutions and jointly developing policy;
2. supporting policy with facts by improving the information exchange between AE, its members and other stakeholders, by setting up a European Dementia Observatory and by comparing national systems and identifying best practices;
3. basing our actions on ethical principles by understanding ethical principles and approaches, promoting a rights-based approach to dementia and finding common ground and building consensus on ethical issues;
4. building a stronger organisation by supporting and involving national associations, involving people with dementia and their carers, establishing AE conferences as unique networking opportunities, developing strategic partnerships, providing a sound governance structure and diversifying the organisation`s funding.
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

As outlined under 1.5.1, AE has four key strategic objectives:
1. Making dementia a European priority,
2. Supporting policy with facts,
3. Basing our actions on ethical principles and
4. Building a stronger organisation.
As part of the 1st objective, AE developed close ties with the different European institutions and created the European Alzheimer`s Alliance comprised of Members of the European Parliament. The organisation also actively participated in the preparation of the French Presidency Conference on Alzheimer`s disease, the Swedish Presidency Conference on dignified ageing and the Spanish Presidency Conference on mental health of elderly people. AE also contributed to policy discussions on a European level, such as information to patients, cross-border health care or the Commission Transparency Initiative. In 2012, AE will develop a memorandum of understanding with ALCOVE, the Joint Action on dementia. Finally, AE took an active part in the consultation process for the development of the Strategic Research Agenda of the Joint Programming on Neurodegeneration and the stakeholder involvement process of the European Innovation Partnership for Active and Health Ageing.
As part of the second objective, AE carried out inventories of national legislation on legal issues affecting people with dementia and their carers. The national reports on healthcare decision making, guardianship systems and restrictions of freedom were published in the 2009, 2010 and 2011 editions of the organisation`s Dementia in Europe Yearbooks. In addition, AE actively communicated with its membership, European institutions and interested parties (~4,500 contacts on AE mailing list) on its activities, European and national policy developments, as well as science breakthroughs via its monthly e-mail newsletter.
As part of the third objective, AE set up the European Dementia Ethics Network with a steering committee comprised of national experts with a background in ethics. In this area, Alzheimer Europe analysed ethical issues in detail, provided an in-depth literature review and published recommendations on such issues as end-of-life care for people with dementia, the use of advance directives by people with dementia, the ethical implications of assistive technologies and of dementia research.
As part of its fourth objective, AE has ensured to involve people with dementia in its activities, meetings and projects and will be setting up a European Working Group of People with Dementia in 2012. AE has also organised successful annual conferences which attracted between 300 and 600 participants from different professional backgrounds and countries.
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, 2011 and 2012 activities, the organisation received operating grants which allowed the organisation to carry out a number of key activities described above, including the Dementia Ethics Network and the Dementia in Europe Yearbooks.

Expected outcomes

Alzheimer Europe has identified four key activities for its 2013 Work Plan which will build on the results of its 2010, 2011 and 2012 operating grants. These activities are geared towards a collaboration with and support of other European initiatives, such as the European Innovation Partnership on Active and Healthy Ageing, ALCOVE, the Joint Action on Dementia and the Joint Programming on Neurodegeneration. In particular, the organisation will carry out the following main activities:
1. National dementia strategies and policies
A significant number of EU countries have developed national strategies, or are in the process of doing so. However, the state of development and implementation varies greatly between countries. AE will carry out an inventory and comparison of national strategies, but will also pay close attention to the policies of those countries which have not yet developed formal strategies. Due to the great number of issues covered in dementia strategies, AE will divide this work over successive years. In 2012, it focused on the medical and scientific issues (research, early diagnosis, treatment, prevention, guidelines and medical education), whereas in 2013 it will focus on the social and care aspects (Care standards, independent living, dementia friendly communities, training of care staff and carer support). National reports will be developed with an overview of national strategies and policies and will be published in the 2013 edition of the Dementia in Europe Yearbook. Particular attention will be paid to developing synergies with the European Innovation Partnership on Active and Healthy Ageing and its two pillars on "care and cure" and on "active ageing and independent living".
2. Ethical discussion of societal attitudes towards dementia
Continuing the focus on ethical issues from previous operating grants (assistive technologies in 2010, dementia research in 2011 and restrictions of freedom in 2012), AE will dedicate its 2013 work on ethical issues to societal attitudes to dementia and an ethical discussion on the portrayal of dementia, the use of language and perceptions of the disease and how they contribute to social exclusion, stigma and discrimination. This will be done in collaboration with the experts identified through the European Dementia Ethics Network. In this area, AE will carry out an extensive literature review and develop recommendations in collaboration with ethical experts.
3. European Working Group of People with Dementia
Thanks to its 2010 operating grant and the consultation of its member organisations, user involvement was identified as a key priority for Alzheimer Europe and this led to the setting up of a European Working Group of People with Dementia in 2012. This working group will meet twice in 2013 and the Chair of the Working Group will participate in the meetings of the AE Board as a full Board member. The Group will be consulted and asked to ensure user representation and involvement in all AE activities. Members of the working group will nominated by the national member organisations of Alzheimer Europe. AE will support the attendance of one person with dementia from nominating organisations as well as that of a carer or other supporter.
4. 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 European Innovation Partnership on Active and Health Ageing, the Joint Action and Joint Programming on Alzheimer`s disease. A focus of the dissemination work will also be on policy developments. Scientific information with regard to research on new treatments and new care approaches will also be highlighted in AE`s dissemination tools (extensive website and monthly newsletter).
5. Assessing the numbers of people with dementia
In 2013, AE will also update the figures on the prevalence of dementia and provide national reports on the numbers of people with dementia in all EU countries based on UN population statistics and the EuroCoDe prevalence rates. AE will also provide a report on the historical and forecast increase of these numbers (by providing estimates for the numbers of people with dementia over the past 5 and next 3 decades 1950-2050).

Start date: 01/01/2013
End date: 01/01/2014
Duration: 12 month(s)
Current status: Finalised
Programme title: Second Programme of Community action in the Field of Health 2008-2013
EC Contribution: € 190 000,00
Portfolio: Interest groups