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Strategic Plan (2011-2015)

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Strategic Plan (2011-2015)

Objective 1: Making dementia a European priority

Representing the interests of people with dementia

As the European organisation representing the interests of people with dementia and their carers, the key aim of Alzheimer Europe is to make dementia a European priority.

As outlined in the Paris Declaration of the political priorities of the European Alzheimer movement, Alzheimer Europe and its member organisations call on European institutions and national governments to recognise dementia as a healthcare priority and to develop European and national dementia action programmes.

Key aims and actions (2011-2015)

  • Alzheimer Europe will analyse in how far national governments have implemented the priorities contained in the organisation’s Paris Declaration.
  • Alzheimer Europe will review the priorities outlined in the Paris Declaration and adopt a new programme of its political priorities.

Partnering with European institutions

Alzheimer Europe will continue working towards this aim with all European institutions: the European Parliament, the European Commission and the Council of Ministers.

In particular, Alzheimer Europe will continue to coordinate the European Alzheimer’s Alliance of Members of the European Parliament with an interest in dementia and will ensure adequate representation of the Alzheimer movement in all European initiatives in the field of Alzheimer’s disease and other forms of dementia.

Key aims and actions (2011-2015)

  • Alzheimer Europe will seek to be closely associated and involved with the European Alzheimer’s initiative and the Joint Programme Initiative.
  • AE will aim to have the support of 15% of the Members of the European Parliament (or 110 MEPs) to the European Alzheimer’s Alliance and the organisation’s activities by the end of the mandate of the current European Parliament.
  • Alzheimer Europe will update Members of the European Parliament on its campaign activities and priorities at least twice a year and continue organising its successful lunch debates.
  • Alzheimer Europe will liaise with future EU Presidencies to ensure dementia will remain on the European agenda. The organisation will also examine the possibility of organising its Annual Conferences in collaboration with forthcoming EU Presidencies.

Jointly developing policy

As an interest organisation, Alzheimer Europe will closely follow the legislative agenda of the European institutions and the Council of Europe. Where appropriate, Alzheimer Europe will develop a position on legislative documents and promote its views to the relevant European bodies.

Alzheimer Europe will liaise closely with the European Patients’ Forum in the development of policies in those areas which deal with general patient or carer issues.

In addition to this reactive policy development, Alzheimer Europe will also develop policies or recommendations in areas not covered by any of the European institutions, but which are of particular interest to Alzheimer associations and to people with dementia and their carers. Possible areas of interest to the organisation are:

  • Guidelines or recommendations on care interventions
  • Recommendations to improve the access by people with dementia and their carers to care services and treatment options
  •  Policy statements on legal or ethical issues in the dementia field

Key aims and actions (2011-2015)

  • The development and implementation of national dementia programmes will be closely monitored by Alzheimer Europe.
  • Alzheimer Europe will set up a public affairs working group with representatives from its national member organisations to monitor national policy developments and coordinate, when possible, European campaigning.
  • In collaboration with its members, Alzheimer Europe will develop a model with the key elements of a national dementia strategy.

Objective 2: Supporting policy with facts

In its campaign to make dementia a European priority, Alzheimer Europe has been able to use the results of European projects, such as its “European Collaboration on Dementia – EuroCoDe” project or surveys of carers of people with dementia in different European countries.

Alzheimer Europe will continue to support its campaign with sound scientific data and information.

Improving the information exchange between AE, its members and other stakeholders

In this regard, Alzheimer Europe will continue to pursue the objective of its previous strategic plan by improving the information exchange between AE, its members and other stakeholders.

Alzheimer Europe plays an important role in gathering information on scientific breakthroughs and policy developments on a national level.  It shares this information with its members and other organisations in its wider network through its quarterly newsletter and through its Internet and Intranet sites.

Alzheimer Europe will pay specific attention to policy developments on a national level and in particular:

  • Policy developments of interest to people with dementia and their carers (social support, drug reimbursement, social security systems)
  • National Alzheimer plans or programmes
  • Research programmes and priorities of national governments.
  • Legal developments in the areas covered by the Alzheimer Europe Lawnet projects (legal capacity and incapacity, guardianship, coercive measures, consent, advance directives, disclosure of diagnosis, driving, participation of people unable to consent in clinical trials and research, etc.)

Key aims and actions (2011-2015)

  • Alzheimer Europe will continue the publication of its monthly e-mail newsletters and will send it to a significantly expanded list of recipients, including European and national policy makers, Alzheimer associations, researchers and people with dementia and their carers.
  • The Dementia in Europe Magazine is a key tool for disseminating information on policy developments. By the end of the period, the magazine will be published on a quarterly basis.
  • The Alzheimer Europe website is another important dissemination tool for the organisation and will continuously be updated.
  • Alzheimer Europe will develop a members’ only section of its website to simplify the communication with the different working groups of the association. In addition, AE will explore the possibility of using this section for the exchange of information between member organisations.

Setting up a European Dementia Observatory

In the long term, Alzheimer Europe intends to become the prime information resource for policy developments in the various European countries covered by the organisation. The aim of the organisation is to set up a “European Dementia Observatory” monitoring and disseminating news on scientific breakthroughs and relevant policy developments.

Key aims and actions (2011-2015)

  • Alzheimer Europe will set up a Scientific Advisory Board which will provide a commentary on important scientific news. Twice a year, Alzheimer Europe will collaborate with the members of the Scientific Advisory Board to publish a Research Digest containing an analysis of the most important scientific developments.

Comparing national systems and identifying best practices

In order to highlight differences in the access by people with dementia and their carers to care services and treatment options, Alzheimer Europe will carry out surveys involving its national member associations.

Based on the experience of previous projects, such as Lawnet or the social support work package of the EuroCoDe project, Alzheimer Europe will in particular analyse the national situation as regards:

  • the financing of long-term care,
  • quality criteria for care services,
  • legislation regarding driving and dementia,
  • training and education of healthcare professionals,
  • the support provided by governments to national Alzheimer associations and
  • the funding of dementia research

By describing and analysing the differences between countries, Alzheimer Europe will identify and promote best practices in the surveyed fields and provide reliable evidence for national organisations to lobby governments.

Key aims and actions (2011-2015)

  • Where possible, Alzheimer Europe will collaborate with other stakeholders to carry out surveys of people with dementia and/or their carers to identify their needs and understand their experiences in order to base policy recommendations on these findings.
  • During the next five years, Alzheimer Europe will also develop a number of comparative reports on key issues identified by the membership.

Objective 3: Basing our actions on ethical principles

Alzheimer Europe’s actions and its campaign need not only be based on scientific evidence and facts. It is equally important for the organisation to base its campaigning on clear and shared ethical principles.

The organisation reiterates its commitment to the underlying philosophy of its first business plan which defined Alzheimer Europe’s mission as promoting and supporting the dignity and autonomy of the person with dementia and his/her family throughout the course of the disease.

In the next five years, Alzheimer Europe will therefore prioritise the work of the European Dementia Ethics Network which was started in 2009 thanks to the financial support of the German Ministry of Health.

Understanding ethical principles and approaches

Alzheimer Europe will carry out an extensive literature search of positions and recommendations on ethical issues developed by professional, medical and carers associations. The European Dementia Ethics Network will establish reading lists on a number of ethical issues and make these available on the organisation’s website. Where possible, the full positions will be included in a searchable database to build up a comparative reference library of existing ethical positions and discussions.

Key aims and actions (2011-2015)

  • Alzheimer Europe will expand the membership of the Steering Committee of the European Dementia Ethics Network to ensure an adequate geographical representation of the different European regions.
  • The participation of people unable to consent in research, the value and disclosure of a diagnosis of dementia, the ethical dilemmas faced by carers of people with dementia in day to day situations and the ethical implications of clinical trials will be the priority areas for the organisation’s in depth literature reviews.

Promoting a rights-based approach to dementia

People with dementia and their carers continue to face stigma and social exclusion. The inclusion of people with disabilities in society and in all activities has however been highlighted by a number of international documents, such as the 2006 UN Convention on the Rights of Persons with Disabilities. These documents highlight people with disabilities (including people with dementia) as subjects with rights rather than the objects of charity, medical treatment and social protection.

Alzheimer Europe will promote this rights based approach and advocate for greater inclusion of people with dementia and their carers.

Key aims and actions (2011-2015)

  • Alzheimer Europe will analyse how the principles enshrined in the UN Convention on the Rights of Persons with Disabilities can be applied to persons with dementia and campaign for the recognition of dementia as a disability.

Finding common ground and building consensus

On identified priority areas, the secretariat will carry out a more in-depth literature search and develop a report with the findings of the literature search. These reports will highlight the areas where ethical positions diverge, as well as areas where a consensus exists. These reports will be made available on the network’s website.

Key aims and actions (2011-2015)

  • Alzheimer Europe will set up working groups with ethical experts on the four subjects identified above (the participation of people unable to consent in research, the value and disclosure of a diagnosis of dementia, the ethical dilemmas faced by carers of people with dementia in day to day situations and the ethical implications of clinical trials).
  • Alzheimer Europe will aim to develop consensual positions on these issues which are supported by its member organisations.

Objective 4: Building a stronger organisation

Alzheimer Europe needs to continuously strengthen the organisation and ensure its operational capacities (including staff and finances) can achieve the ambitious aims and objectives of its Strategic Plan.

In addition, Alzheimer Europe will develop annual Work Plans based on this strategic plan which take into account the financial situation of the organisation.

Supporting and involving national Alzheimer associations

In all its activities, Alzheimer Europe will ensure to involve its membership. Members will also be asked to assess the initiatives and projects of Alzheimer Europe on a continuous basis, in order to ensure they meet the expectations of national member organisations.

When selecting members of working groups and steering committees, Alzheimer Europe will ensure that different member organisations will be involved and able to participate.

Key aims and actions (2011-2015)

  • Alzheimer Europe will identify and work with Alzheimer associations from all Member States of the European Union.
  • Alzheimer Europe will continue to involve representatives of national organisations in all activities in particular the organisation’s campaign to make dementia a European priority.
  • Workshops will be organised at AE Conferences to promote the exchange of information and experiences between associations on organisational issues, such as campaigning, public affairs or awareness raising.
  • Alzheimer Europe will review its membership policy and develop clear criteria to allow for a fair representation of national associations.

Involving people with dementia and their carers

Alzheimer Europe is above all the umbrella organisation of national Alzheimer associations. At the same time, the organisation has provided a voice for people with dementia at its Annual Conferences and has successfully involved and consulted people with dementia in various working groups and projects.

Alzheimer Europe will also ensure that the voice of carers is adequately represented at the different levels of the organisation.

Key aims and actions (2011-2015)

  • Alzheimer Europe will continue to involve and consult people with dementia and their carers in its conferences and working groups.
  • A working group of people with dementia from different European countries will be set up by the organisation and Alzheimer Europe will establish clear terms of reference for the working methods of the group as well as for membership within the group.
  • The working group of people with dementia will elect a representative to act as a full member of the Alzheimer Europe Board.
  • Alzheimer Europe will ensure (former) carers of people with dementia and people with dementia constitute the majority in the organisation’s governing bodies.

Establishing Alzheimer Europe Conferences as unique networking opportunities

Alzheimer Europe has a long tradition of organising annual conferences. The audience of its conferences is unique though as it mostly attracts representatives from Alzheimer association, professional carers, care researchers and of course people with dementia and their carers. Alzheimer Europe will not compete with other long established conferences which mainly attract health care professionals and medical researchers.

Rather, a long-term conference concept will be developed which will make the Alzheimer Europe Conference the prime conference on dementia care, dementia ethics and dementia policy in Europe.

Key aims and actions (2011-2015)

  • Alzheimer Europe will develop a long term concept for Alzheimer Europe Conferences.
  • Alzheimer Europe will alternate between holding larger Conference covering care, ethics and policy and smaller thematic conferences dedicated to an in-depth exploration of a specific subject. In each case, an Annual General Meeting will be organised in conjunction with the Conference.

Developing strategic partnerships

Alzheimer Europe will develop strategic partnerships with other organisations active in the dementia field. Particular attention will be paid to forging closer ties with scientific organisations and associations of health and social care professionals.

In order to promote the dialogue with members of the professions involved in dementia care, Alzheimer Europe will organise yearly meetings with the presidents of the European scientific societies of psychiatrists, neurologists, psychologists, general practitioners, geriatricians, nurses, etc. Alzheimer Europe will also develop its contacts with relevant professional organisations involved in social care and the social sciences.

Similarly, Alzheimer Europe will attend the yearly meetings of relevant scientific organisations in order to promote the interests of people with dementia and their carers and to present the positions and activities developed by the organisation.

Key aims and actions (2011-2015)

  • Alzheimer Europe will establish partnership agreements with a number of scientific and professional organisations, including but not limited to the European Alzheimer’s Disease Consortium, the Interdem network, the European Federation of Neurological Societies and the European Association of Geriatric Psychiatry.
  • Alzheimer Europe will develop associate membership status for professional and academic organisations with an interest in dementia.

Providing a sound governance structure

The Board of Alzheimer Europe plays an active role in steering and monitoring the organisation’s activities as well as its financial commitments.

In addition, important policy statements are adopted by the membership at large and Alzheimer Europe has adopted clear guidelines on how positions can be adopted without convening formal meetings.

Key aims and actions (2011-2015)

  • Alzheimer Europe will review its statutes and rules and regulations to identify areas where improvements could be made.

Diversifying the organisation’s funding

Any organisation needs to rely on stable funding for its activities. Whilst Alzheimer Europe has been able to rely on a variety of sources of income, it has yet to secure long term funding which is not prone to fluctuations or differences from one year to the next.

Key aims and actions (2011-2015)

  • Alzheimer Europe will campaign for the inclusion of Alzheimer’s disease as a funding priority of the public health programme and for operating grants to be provided for the organisation’s activities.
  • Alzheimer Europe will develop a long term funding strategy and identify specific funding streams for its various activities and projects.
  • Alzheimer Europe will review the membership fee structure to take better account of the financial situation of its members rather than their geographical situation.
  • Alzheimer Europe will investigate the possibility of asking for subscriptions for its Dementia in Europe magazine and other publications.
  • The concept for Alzheimer Europe conferences will need to ensure conferences generate a small financial return for the organisation.

 

 
 

Last Updated: mardi 13 mars 2012

 

 
 

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