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AE_FY2014_FY2013 [AE_FY2014] [20133204] - 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 various Presidency Conference on Alzheimer`s disease, dignified ageing and 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. Recent examples are the clinical trials and data protection regulations. In 2012, AE developed a memorandum of understanding with ALCOVE, the Joint Action on dementia and actively collaborated in various work packages of the Joint Action. 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 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, dementia research and restrictions of freedom.
As part of its fourth objective, AE has involved people with dementia in its activities, meetings and projects and set up a European Working Group of People with Dementia in 2012 with representatives of 11 different national associations. 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 activities from 2010 to 2013, 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 five key activities for its 2014 Work Plan which will build on the results of its previous 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 care pathways in dementia
AE will carry out a review of care pathways for people with dementia as they are defined in national dementia policies and as they are perceived by patients and carers. Particular attention will be paid to the role of general practitioners in the detection and diagnosis of dementia and the existing bridges between the health and social care sectors. AE will involve the partners of the ALCOVE network (consisting of representatives of national health ministries) in this priority area. National reports will be developed highlighting the facilitators and barriers for a seamless chain of care in the different European countries. These reports will be made available on the AE website.
2. Ethical discussion of day-to-day issues faced by carers of people with dementia
As in previous operating grants, AE will continue to focus on ethical issues. In 2014, AE will work on ethical problems faced by carers on a day-to-day basis. This analysis will be done in collaboration with the experts identified through the European Dementia Ethics Network. AE will ask for case vignettes from carers of people with dementia and will ask experts to provide an ethical commentary on these case studies. In addition, 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 previous operating grants, 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 2014 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. A guide on dementia friendly accommodation will be developed in collaboration with the group.
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 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 and AE will involve members of its Expert Advisory Panel to provide a commentary on some of the most important research developments. AE will rely on its existing dissemination tools (extensive website and monthly newsletter).
5. Organisational issues
As part of the 2014 operating grant, AE will organise four meetings of the Alzheimer Europe Board to monitor and supervise the activities carried out in the framework of the organisation`s operating grant.

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: € 285 168,00
Portfolio: Mental health