Download: PDF RTF XML Booklet: Review (0) Retrieve Add item
Alzheimer Europe 2016 [AE2016] [707934] - Operating Grant
Project abstract

The key objectives of AE's 2016 activities are as follows:
1. Increasing knowledge about current national dementia policies in order to promote best practices and reduce existing inequalities in dementia care in Europe
2. Promoting collaboration and exchange on ethical issues linked to dementia
3. Improving the involvement of people with dementia in EU activities
4. Improving the information exchange on dementia through the setting up of a European Dementia Observatory and the organisation of an Annual Conference
5. Capacity building for national Alzheimer associations
6. Ensuring effective governance

Summary of context, overal objectives, strategic, relevance and contribution of the action

The Commission Communication on a European initiative on Alzheimer’s disease and other dementias identified a number of underdeveloped policy and research areas. In particular, the Communication highlighted that “insufficient attention is paid to rights of people suffering from a cognitive deficit”. Alzheimer Europe had already developed national reports on the legal rights of people with dementia in a number of European countries. These reports focused on the legal capacity of people with dementia and proxy decision making systems and were presented in the organisation’s 2009 and 2010 yearbooks with the support of the health programme of the European Union. In 2016, Alzheimer Europe updated all national reports on these issues as part of its 2016 work programme and focused on the identification of best practices in this field.
Another priority of the organisation in 2016 was linked to the ethical implications raised by the changing research definition of Alzheimer’s disease. The NINCDS-ADRDA and the DSM-IV-TR criteria for Alzheimer's disease (AD) were the prevailing diagnostic standards in research; however, a number of researchers led by Prof. Bruno Dubois proposed new criteria to capture earlier stages of the disease before dementia sets in and stages without symptoms where brain changes have already occurred. These prodromal and asymptomatic stages of Alzheimer’s disease and the potential disclosure of an at-risk status of developing dementia due to Alzheimer’s disease raises significant ethical issues which need to be fully explored. Further changes of terminology (e.g. linked to Alzheimer’s disease and dementia) in DSM-V, which was published in 2013 and superseded DSM-IV-TR, raised yet further ethical issues. As part of its 2016 Work plan, AE therefore carried out a review on these issues and provided ethical recommendations on the changing definition of Alzheimer’s disease, dementia, genetic and biomarker testing and the disclosure of the risk of developing dementia.
The Commission Communication on a European initiative on Alzheimer’s disease and other dementias also stated that “Alzheimer’s associations should ensure that patients are duly consulted”. In the field of “service user” or “citizen involvement”, there is widespread recognition of the benefits of ‘such involvement in public policy, both at an individual and collective level. Moreover, patient and public involvement and engagement in dementia research are gradually becoming more common. Even if the language of involvement has long been used in the dementia field in a similar way to that used by the disability sector, it is clear that involvement activities only began in the last 10 year and are much less widespread. Several guidelines on how to involve and engage people with dementia, patients and the public are available. However, further clarity is needed so as to distinguish between such means of consultation/involvement and actual participation in research. In addition, it is necessary to consider possible cultural differences and the ethical implications of such involvement. AE’s European Working Group of People with Dementia with a membership from 11 different Alzheimer associations therefore continued to be an innovative and absolutely pivotal part of the organisation’s activities in 2016. AE ensured that the views of people with dementia were duly integrated in all AE projects and activities. In addition, AE explored how user involvement can and should be an essential part of dementia research and provided recommendations on how to proactively involve people with dementia.
The Commission Communication also highlighted the existence of good practices in the field of dementia care and treatment, but the European Commission noted that “they are not being shared throughout the Union”. As part of its 2016 Work Plan, AE continued to improve the information exchange between European and national level, as well as b

Methods and means

The various activities of the 2016 Work Plan were carried out by the staff of Alzheimer Europe under the supervision of the organisation’s Executive Director. Regular progress updates were provided to the Board of Directors who monitored the organisation’s activities and finances. In addition, AE was able to rely on a number of additional groups for support and advice:
• AE set up an Expert Advisory Panel of researchers and academics. The general aim of this group was to advise AE on medical and scientific developments and to provide a commentary on research news identified as part of the organisation’s European Dementia Observatory. The group also supported the development of the organisation’s first research digest which provided an overview of key research developments. The panel also supported the organisation of the Annual Conference by recommending topics and speakers and by helping with the evaluation of all submitted abstracts.
• For the organisation of its Annual Conference in Copenhagen, AE had created a small organising committee tasked with organisational and financial aspects linked to the conference venue, the social programme and all practical aspects. For its collaboration with the national Danish Alzheimer’s association on these aspects, AE has developed comprehensive conference guidelines detailing the respective roles of the European organisation and the local host association
For the 2016 Dementia in Europe Yearbook “Decision making and legal capacity on dementia” national Alzheimer organisations and other relevant experts were involved in the data collection and validation of the report. One member of AE Board who is a lawyer also reviewed its contents prior to publication. An extensive review on existing literature was also carried out.
AE set up a specific working group for its priority programme on the ethical implications of the changing definitions and use of terms related to Alzheimer’s disease. Eleven experts were contacted and ten experts took part in the project. The experts were invited on the basis of their knowledge and expertise in the domain of biomedical research, ethics, medical ethics, philosophy, psychology, old age psychiatry, dementia research, the media and having dementia. The multi-disciplinary working group included leading biomedical researchers and ethicists in the field, as well as a person with dementia, who was the Vice Chair of the European Working Group of People with Dementia and is currently a member of the World Dementia Council.

Work performed during the reporting period

AE identified six key objectives for its multiannual work programme (2015-2017) which built on the results of its previous operating grants.
In 2016, the organisation focused on the following objectives and implemented the following actions:
1. Increasing knowledge about current national dementia policies and strategies, in order to promote best practices and reduce existing inequalities in dementia care in Europe
In 2016, AE:
• Carried out an inventory of policies across Europe directly affecting the rights of people with dementia with a particular focus on legal capacity, consent and proxy-decision making systems and update existing national reports describing the national policies in detail
• Analysed the differences and commonalities in legal systems and responses on legal capacity, consent and proxy-decision making and produced a comparative report with the key findings
• Identified several good and innovative practices and relevant gaps in these policies and practices in different European countries
2. Promoting collaboration and exchange on ethical issues linked to dementia
In 2016, AE:
• Dedicated the work of the European Dementia Ethics Network to the ethical questions raised by the changing definitions/use of terms related to Alzheimer’s disease, which also touched on issues linked to definitions of dementia and to genetic and biomarker testing and the disclosure of the risk of developing dementia
• Set up a multi-disciplinary working group with ethical experts, health and social care professionals, researcher, carers and people with dementia and conducted two one-day working sessions in which the various experts debated issues relevant to this topic focusing on representations of health and disease, personal identity and personhood, diagnosis, healthcare and research, citizenship, politics and policies, the media and public awareness
• Published a report to promote wider discussion on the ethical challenges raised by the changing definitions/use of terms related to Alzheimer’s disease, which also contained Alzheimer Europe’s position on these issues.
3. Improving the involvement of people with dementia in EU activities
In 2016, AE:
• Organised three meetings of the European Working Group of People with Dementia (EWGPWD) which included representatives from eleven different AE member organisations
• Consulted the EWGPWD on all activities carried out in the framework of the operating grant
• Developed a report with guidelines on promoting public and patient involvement strategies with a focus on the involvement of people with dementia in dementia research in the context of public and patient involvement.
4. Improving the information exchange on dementia by setting up a European Dementia Observatory and organising an Annual Conference
In 2016, AE:
• Continued to monitor and report on scientific and policy developments at a national and EU level in the field of dementia as part of its role of European Dementia Observatory
• Published these findings in monthly e-mail newsletters and on the Alzheimer Europe website
• Involved its Expert Advisory Panel to provide comments on breaking scientific stories and produced a Research Digest with the key findings and scientific breakthroughs in the fields of preventing, treating and managing Alzheimer’s disease and other forms of dementia
• Organised a conference in Copenhagen, Denmark under the motto “Excellence in dementia research and care” with the participation of over 700 participants from23 EU countries
5. Capacity building for national Alzheimer associations
In 2016, AE:
• Identified the training needs of staff and volunteers of national Alzheimer associations and developed a capacity building programme based on those needs
• Organised its Alzheimer Association Academy, a capacity building seminar with 24 representatives from 21 national member organisations in December 2016
6. Ensuring effective governance
In 2016, AE:
• Organis

The main output achieved so far and their potential impact and use by target group (including benefits)

In 2016 Alzheimer Europe was able to effectively pursue all the main goals and planned activities that had been identified in its Work Plan. Among the main strengths of the work developed by AE is the increasing involvement and empowerment of people living with dementia and their carers. This has been achieved by a number of actions. Firstly, by continuing and strengthening the work developed by the EWGPWD. The EWGPWD has continued its solid work and involvement in all AE activities but also this year, the group has received international recognition for the several and meaningful contributions of the group and its members. As an example, the EWGPWD has received this year an international award, has been involved in two academic publications and has participated in one of the WP of the Join Action on Dementia.
The work of the EWGPWD has a great impact beyond the actual contribution to the AE activities. It is helping to change the attitudes and beliefs of healthcare professionals, researchers and policy makers that participate in such activities. This work challenges their perceptions and preconceptions of dementia and of the relevance of what people with dementia have to say. In addition to the work developed through the EWGPWD, AE has also facilitated the participation of 35 people with dementia in its Annual Conference in Copenhagen and the participation of several people with dementia and carers in the plenary and parallel sessions of the conference.
Finally, AE has also developed a position paper on how to involve people with dementia in Public and Patient Involvement activities. It is hoped that this paper will help AE members as well as other organisations in the field of dementia to better understand and pursue the involvement of people with dementia in their activities and research. All these coordinated actions that AE is developing at different levels help to ensure a better understanding and recognition of the role that people with dementia can play in society and also provide very concrete examples of how this can be achieved. A limitation of this work, is that to date, the involvement and empowerment of people with dementia is not the “norm” in all EU Member States. However, it is worth mentioning, that this year, for the first time, the EWGPWD has a member from Portugal and another member from Bosnia, both countries where the stigma of dementia is still very prevalent.
Another strength of the work developed by AE in the OG, is the involvement of all its members in the comparative report which this year addressed the topic of decision making and legal capacity. An important number of AE members (i.e. national Alzheimer organisations) were closely involved in this work. 17 national organisations participated in the early planning and design of the report. A total of 31 countries, (including also countries where AE has no members) have contributed to the report. Thanks to this common effort, an overview of the legal frameworks addressing legal capacity and decision making in dementia in Europe is presented in the report. However, further details regarding the implementation of such frameworks were beyond the scope of the report and can be seen as a limitation of this work.
Finally, it was also an achievement to be able to bring together leading experts in both medical ethics and biomedical research for its work on the changing definitions and use of terms related to Alzheimer’s disease.

Achieved outcomes compared to the expected outcomes

One of Alzheimer Europe objectives was to increase knowledge about current national dementia policies and strategies, in order to promote best practices and reduce existing inequalities in dementia care in Europe. To achieve this objective, in 2016 AE produced a comparative report as well as national reports on the topic of decision making and legal capacity in dementia.
Whilst a diagnosis of dementia, on its own, should not be considered as preventing people from making decisions, its symptoms may, at some times, make it more difficult for the person to understand the information, retain it or communicate his/her decision to others. Many people with dementia are well able to make decisions about several aspects of their lives, and some, may need at times, support for making or communicating a decision. As the condition progresses, decision making about complex matters, may become challenging. Traditionally, legislative frameworks aimed to protect people who were considered as lacking the capacity for making decisions on their own, also sometimes to protect the family from decisions by people whose capacity could be questioned. Many jurisdictions in Europe, in the past, had an “all-or-nothing” approach, resulting in the person lacking capacity being deprived of his/her legal rights and the powers given to a substitute (or surrogate) decision maker. This was often based on the assumption that the person was incapable of making decisions or on the paternalistic idea that the person might make ‘bad decisions’.
Recently, in some countries there has been a shift from this caring/protectionist approach to an approach focussed on the principle of self-determination and on promoting the autonomy of individuals so as to enable them to make their own decisions. The field has significantly changed in the last decades and many countries are working towards promoting the autonomy of people with dementia and enable them to make their own decisions (or to be involved in such decision making) for as long as possible. This is in line with the recommendations of the Council of Europe and International Conventions. However, this is not the situation in all EU Member States. As identified in the report, for example, some countries in Europe have not yet adopted a legal framework for advance directives. The work that AE has developed can help and inform the work of policy makers interested in reforming or improving their legal systems to better promote the rights of people with dementia.
The report also highlights good practices on involving people with dementia in decision making as well as safeguards for people with dementia who are under guardianship orders from misuse of power. The report provides examples of some of the most recent legislation in the field of legal capacity which was guided by a rights-based approach and has a great emphasis on promoting the right to self-determination and autonomy of the person. The report also highlights how some countries have dealt with or are planning to deal with some of the challenges of addressing the recommendations of the various International conventions and Council of Europe (e.g. the concept of “unwise decisions” or the “practicable steps” that need to be taken to assess that a person lacks capacity). The report also shows how the legal concepts are linked to other social, medical and practical aspects such as stigma, access to timely diagnosis, training or awareness. A strength of this work is that information on both the national situation (i.e. national reports) as well as a comparative overview is provided to the reader, so if the reader may want a deeper understanding of the one aspect in a particular country, such information is also available in the national report for the country.
The report has been sent to several relevant stakeholders including national Alzheimer organisations and MEPs in Europe. This has contributed to showcase the work that has been already done a

Dissemination and evaluation activities carried out so far and their major results

1. Dissemination
AE’s website continued the trend of increasing its website visitors each year, with more visitors in 2016 than in previous years. The website attracted 4.29% more visitors, with the total number of unique visitors increasing from 737,858 in 2015 to 769,489 in 2016.
In 2016, AE also continued to step up its social media presence, particularly on Facebook and Twitter.
AE’s Facebook page registered 6,593 “likes” at the end of 2016, an increase from 5,873 likes at the end of 2015. As for Twitter, the association had reached 5,942 followers at the end of 2016 (4,034 in 2015) and had tweeted 1,521 times (1,479 in 2015).
Social media is a daily part of AE’s activities and an integral part of communications related to the Annual Conference as well as other events and projects. The 2016 conference hashtag #26AEC had 20,407,711 “tweet impressions” and over 1,100 users were actively tweeting about the conference using the hashtag. These statistics show that a truly vast number of Twitter users had access to information about AE and its conference.
All AE team members who are involved in projects and attend AE events are active Twitter users, tweeting from events where they represent the organisation. The total number of Tweets by AE and its team members in 2016 was 3,605 (2,707 in 2015) and tweet impressions reached 2.57 million (1.9 million in 2015).
Twitter is also used by AE as a means to increase website traffic, which likely explains the increase in the number of “unique visitors” to the website in 2016.
In July, Alzheimer Europe was named among the top ten most influential NGOs on Twitter in the EU, alongside such household names as Amnesty International, WWF and Greenpeace. This was part of a report produced by Hill + Knowlton Strategies, based on the number of MEPs following NGOs’ accounts.
Finally, for two key reports, namely the 2016 Yearbook and 2016 ethics report as well as the organisation’s 2015 Annual Report, 2,600 copies were published and disseminated through Alzheimer Europe to Members of the European Parliament and other European institutions and through AE’s national member organisation to key national opinion leaders.
2. Evaluation
The evaluation of its 2016 activities was an integral part of the organisation's 2016 Work Plan. A separate deliverable D6.2. Evaluation report provides and analysis on whether and how AE reached the various inidcators included in the operating grant agreement.
In addition, Alzheimer Europe carried out an evaluation of its Annual Conference in Copenhagen and its Alzheimer’s Association Academy.