Dementia Ethics Network

The launch phase of the Dementia Ethics Network was successfully completed in 2009 with the support of the German Health Ministry and the implementation continued in 2010 thanks to the operating grant of the public health programme.

The three key aims of the Dementia Ethics Network will remain unchanged in 2011 and will consist in:

• 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.

Reference library on ethical issues

The Secretariat will continue to carry out extensive literature searches of positions and recommendations on ethical issues developed by professional, medical and carers associations. The Dementia Ethics Network will establish reading lists on a number of ethical issues and make these available on the network’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.

In 2011, Alzheimer Europe will focus on the following ethical issues to develop reading lists:

• Consent and healthcare decision making,
• End-of-life issues
• Genetic research and testing
• Disclosure of diagnosis
• Advance directives

Key deliverables in 2011:

• Reading lists available on Ethics section of AE website
• Expanded database of ethical positions

Literature review and consensus development

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 and a full list of references. 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.

After the development of a position on the use of assistive technologies and a thorugh literature review on the ethical implications of dementia research in 2010, AE will continue its work on the ethical issues of dementia research also in 2011. In particular, the organisation will develop a detailed report on these issues which will present the outcome of the literature search, as well as the position of Alzheimer Europe.

Furthermore, in 2011, Alzheimer Europe will start work on identifying the ethical issues family and informal carers of people with dementia face in every-day situations at home. A literature review will be carried out in this field.

To support the secretariat in these tasks, the Steering Committee of the European Dementia Ethics Network will be asked to set up working groups for these two issues. Experts will be chosen for their expertise in the field and will come from different European countries.

Also, these two subjects will be highlighted at the 21^st AE Conference in Warsaw and will be included as special areas for the call for abstracts for the conference.

In 2010, there will be one meeting of each of the working groups, as well as two meetings of the Steering Committee.

Key deliverables in 2011:

• In-depth literature review on the ethical issues faced by informal carers of people with dementia at home
• Report on the ethical implications of dementia research

Guidance on ethical dilemmas

The network will also aim to provide support to individual carers and healthcare professionals faced with ethical dilemmas.

While the network recognises that it will not be possible to provide direct answers to people faced with an ethical dilemma and comment on individual cases, the network will provide a list of existing helplines, structures and experts who may be in a position to provide such guidance.

In 2010, Alzheimer Europe developed a forum for people with dementia, carers and health care professionals in which they could raise and discuss ethical problems they face in every-day situations.

In 2011, an analysis of all discussions of the forum will be carried out in order to identify some key ethical issues raised by people with dementia, their carers and healthcare professionals. On the basis of this analysis, a number of case studies will be developed which will be commented by a number of ethics experts. These case studies will be made available on the ethics section of the AE website. The aim of these case studies is to provide guidance to visitors of the website faced with a similar ethical issue.

Key deliverables in 2011:

• Analysis of forum discussions on ethical issues
• Case studies of key ethical issues with expert commentary presented on ethics section of AE website

Legal Rights Project

Thanks to the European Commission financed project “Lawnet” in 1997 and 1998, Alzheimer Europe was able to provide an inventory of legislation affecting people with dementia in the 15 Member States of the European Union. With the enlargement of the European Union and key policy reviews having been undertaken in a number of European countries, it has proved important to update and expand these reports. The review of the different national reports was foreseen in three phases and the reports on healthcare decision making were finalised in 2009 and published in the 2009 Dementia in Europe Yearbook. The assessment of legal capacity and guardianship systems will be covered under the 2010 operating grant and the national reports will be published in the 2010 Dementia in Europe Yearbook.

The third phase will be dedicated to legislation covering deprivations of freedom and coercive measures and in 2011, Alzheimer Europe will produce national reports on the situation in the 27 Member States of the European Union, as well as Croatia, Iceland, Norway, Switzerland and Turkey.

The findings of the project will be published in the 2011 Dementia in Europe Yearbook of the organisation. As with previous editions, the organisation will attempt to include forewords by representatives of the different European institutions (Commission, Parliament and Council of Ministers).

Key deliverables in 2011:

• National reports on restrictions of freedom and coercive measures in the Member States of the European Union and other European countries covered by the organisation
• Dementia in Europe Yearbook dedicated to a presentation of European legislation on restrictions of freedom and coercive measures

European Dementia Observatory

In the past years, Alzheimer Europe has greatly improved the information it provides to its members and external stakeholders on key developments. Its monthly newsletter contains information on its latest activities and those of the European Alzheimer’s Alliance and its member organisations, as well as information on interesting policy initiatives both on a national and European level.

With the adoption of the Joint Programming Initiative and the Commission Communication on a European Alzheimer’s initiative, the Commission has stressed the European dimension of dementia as a public health priority and the need for Member States of the European Union to collaborate and exchange best practices.

In 2011, Alzheimer Europe will therefore collaborate closely with the Joint Initiative called for under the 2010 Work Plan of the public health programme and the Joint Programming Initiative. In its communication tools, the organisation will regularly feature information on the aims, activities and progress of these two key initiatives.

With the establishment of its European Dementia Observatory in 2010 and closer collaboration with its Expert Advisory Panel, Alzheimer Europe has been able to improve its work in gathering and disseminating all relevant information to the wider dementia community and interested policy makers. AE will therefore continue the development of its monthly e-mail newsletter and feature all news on its constantly expanding website.

As in 2010, Alzheimer Europe will ask the members of the Scientific Expeert Advisory Committee to contribute twice a year to a Dementia Research Digest on the most important research developments of the year. These digests will be written in an easy-to-understand language and will be sent by e-mail to the persons included on the Alzheimer Europe mailing lists.

Key deliverables in 2011:

• Monthly e-mail newsletters on the activities of Alzheimer Europe, its member organisations, policy initiatives, research updates and European developments
• Dementia Research Digests

21^st Alzheimer Europe Conference in Warsaw

In 2011, Alzheimer Europe will organise its 21^st Annual Conference in Warsaw, as Poland will be holding the rotating EU Presidency during the second semester of that year. Also, the organisation recognises the importance of expanding its outreach to Central and Eastern European organisations.

Under the theme “European solidarity without borders”, Alzheimer Europe wants to focus on the growing collaboration between Member States in the issues of dementia research, but also on the diagnosis, care and treatment of dementia.

Alzheimer Europe will also liaise closely with the Joint Action and the Joint Programming Initiative on Alzheimer’s disease to ensure the aims and results of these two key European initiatives are presented to a larger European audience.

Finally, the organisation will use the Warsaw Conference to present the work of the European Dementia Ethics Network and the findings of its Legal Rights Project.

For parallel sessions, a call for papers will be included which will be in line with some of the key priorities identified in the Commission Communication close the conference website which will ask for contributions on the following subjects:

Exchanging best practices on care approaches

• Respite care for people with dementia and their carers
• Home care
• Nursing home care
• End-of-life care

Promoting the legal rights of people with dementia

• Guardianship systems
• Competence assessment and legal capacity
• Restrictions of freedom and coercive measures
• Consent and healthcare decision making

Providing an ethical base for our actions

• The ethics of dementia research
• Assistive technologies
• Ethical issues faced by informal carers
• End-of-life issues

Making dementia a policy priority

• European actions on dementia
• National dementia strategies
• Financing care
• Social support systems

A scientific committee will be created for the purpose of the conference, which will be tasked with the selection of successful abstracts.

In order to ensure that countries which may have economic difficulties in sending delegates to the conference, Alzheimer Europe will set up a bursary system for 20 participants whose travel, accommodation and registration costs will be borne by the conference. At least 5 of these bursaries will be set aside for people with dementia wishing to attend the conference.

All Powerpoint presentations of the conference will be included on the conference section of the AE website.

Key deliverables in 2011:

• Conference section of the AE website with abstract submission and registration forms
• Second announcement for AE conference
• Final programme and abstract book
• Abstracts available on AE website

EU Public Affairs Activities

European Alzheimer’s Alliance and Dementia Intergroup

After the European elections in June 2009, Alzheimer Europe officially reconstituted the European Alzheimer’s Alliance and continued with the organisation of its lunch debates in the European Parliament.

Alzheimer Europe will continue in 2010 to actively identify additional Members of the European Parliament with an interest in dementia and to expand the membership of the European Alzheimer’s Alliance.

As in previous years, Alzheimer Europe will organise at least two meetings of the Alliance/Intergroup on subjects chosen and identified as priority areas by the involved Members of the European Parliament. One of these meetings will also serve to launch the 2011 Dementia in Europe Yearbook.

Key deliverables in 2011:

• Meeting reports of Alliance/Intergroup meetings
• Own initiave European Parliament report on Alzheimer’s disease

Policy Watch and “Dementia in Europe Magazine”

In 2011, Alzheimer Europe will continue with the development of its public affairs working group and organise three meetings. The working group will be comprised of key representatives of the Alzheimer Europe organisations active in the field of public and governmental affairs. This committee will advise the public affairs officer of the organisation in the development of Alzheimer Europe position on EU policy initiatives and the contacts to representatives of the different European institutions.

Meetings of the working group will be dedicated to a discussion of European issues and the support of the Alzheimer Europe strategy. At the same time, a part of the meeting will be dedicated to an exchange of information on the national strategies and activities carried out by national organisations.

This working group will also support the publication of the “Dementia in Europe Magazine” which will be published three times in 2011.

Key deliverables in 2011:

• Dementia in Europe Magazines

Paris Declaration Update

The Paris Declaration of Alzheimer Europe provided a number of clear priorities which Alzheimer Europe and its member organisations expected national governments to comply with. In order to assess in how European countries comply with the priorities listed in the Paris Declaration, Alzheimer Europe will carry out a survey. This survey will be presented to Members of the European Parliament and should also support the lobbying activities of national organisations.

Key deliverables in 2011:

• Report on the implementation of the Alzheimer Europe Paris Declaration

European Dementia Strategy

A number of European countries are in the process of implementing or developing national Alzheimer plans or dementia strategies. Alzheimer Europe will carry out a comparison of existing strategies. The anaylsis will serve the development of a model European dementia strategy.

Key deliverables in 2011:

• Comparative report on national dementia strategies

Organisational Issues

Membership development

Alzheimer Europe currently has members in the vast majority of Member States of the European Union, with the exception of Hungary, Latvia and Lithuania. Very informal contacts exist with local representatives in those countries and AE will need to identify ways in which to support these representatives to develop/start local Alzheimer associations.

Alzheimer Europe will continue its bursary system for participants from smaller Alzheimer associations to attend the Alzheimer Europe conference in Warsaw.

At the same time, Alzheimer Europe will ensure an adequate involvement of all Alzheimer associations in the work of the organisation and the different projects undertaken in 2011 including all public affairs activities.

Key deliverables in 2011:

• Field reports of situation of Alzheimer associations in Hungary, Latvia and Lithuania

Involving people with dementia

Alzheimer Europe has clearly defined a number of priorities regarding the involvement of people with dementia in the organisation’s activities. As in previous years, Alzheimer Europe will ensure people with dementia are involved as speakers in the plenary and parallel sessions of the Warsaw conference. Similarly, the bursary system for people with dementia will be continued in 2011.

Alzheimer Europe will also start the development of a European working group of people with dementia from different nationalities to advise the organisation on issues of importance and to promote the exchange of good practices between national organisations on the involvement of people with dementia. Terms of reference for this working group will be developed in 2011 and the working group will be convened for the first time in the framework of the Warsaw Conference. In addition, the terms of reference will define how the working group will elect a representative to the Alzheimer Europe Board. A statutory amendment will be prepared and submitted to the AGM in Warsaw.

Key deliverables in 2011:

• Development of a European Working Group for people with dementia