2016 Highlights

In 2016, Alzheimer Europe:

  • received an operating grant from the European health programme for its core activities
  • collaborated with the Dutch and Slovak EU Presidencies and actively contributed to their Presidency Conferences “Living well with(out) dementia” in Amsterdam May and “Alzheimer’s disease – epidemic of the third millennium: Are we ready to face it?” in Bratislava in November
  • participated as an observer in the meetings of the group of governmental experts on dementia convened by DG SANTE
  • developed close working relationships with the new Joint Action on Dementia coordinated by the Scottish Government and contributed to the four priority actions of timely diagnosis and post-diagnostic support, crisis management and care coordination, quality of residential care and dementia-friendly communities
  • was consulted by the World Health Organisation on the development of the Global Dementia Observatory and supported the campaign of Alzheimer’s Disease International for the development of a global dementia action plan
  • welcomed the launch of new dementia strategies in the Czech Republic, Denmark and Slovenia and the development of a neurodegenerative diseases strategy in Spain
  • played an active role in the Patients’ and Consumers’ Working Party of the European Medicines Agency
  • continued its work with the European Alzheimer’s Alliance, which ended the year with 128 Members of the European Parliament from 27 out of 28 EU Member States
  • involved members of the European Alzheimer’s Alliance in the organisation of two lunch debates in the European Parliament
  • supported a Written Declaration on the prioritisation of a European dementia strategy which was signed by 135 Members of the European Parliament
  • played an active role as a member of the European Patients’ Forum and supported the development of positions and statements from the broader patient and carer community in response to EU policy developments
  • organised two face-to-face meetings of the public affairs committee for an exchange on EU and national policy developments and campaigns
  • identified legal capacity and proxy decision making as the focus of its 2016 Yearbook, updated the existing national reports and developed new reports to describe national legislation in 31 European countries, produced a comparative report and identified best practices in this field
  • continued with the development of its European Dementia Observatory by proactively identifying relevant policy and research developments and communicating them to its member organisations and wider community
  • continued to partner with Newsweaver for sending its e-mail newsletter which covered 730 dementia-related news and expanded the list of people receiving the newsletter to almost 7,500
  • involved its Expert Advisory Panel in commenting on and providing context to breaking research stories
  • published a Research Digest at the end of the year highlighting the key scientific developments in different scientific areas
  • promoted its website and attracted 769,489 unique website visitors in 2016
  • ensured social media are a full part of the organisation’s communication activities, reached 5,942 Twitter followers and 6,593 Facebook likes by the end of the year
  • involved all AE staff in social media activities which collectively reached over 2.5 million tweet impressions
  • was named one of the top ten most influential NGOs on Twitter for Members of the European Parliament
  • continued to develop its European Dementia Ethics Network and identified the changing definition of Alzheimer’s disease and its ethical implications as the priority of its work
  • set up a working group comprised of ethicists, clinicians, researchers and people with dementia and carers that met twice in 2016 to discuss the ethical issues raised by the changing definition of Alzheimer’s disease
  • published a discussion paper and Alzheimer Europe’s position on ethical issues linked to the changing definitions/use of terms related to Alzheimer’s disease
  • organised three meetings of the European Working Group of People with Dementia (EWGPWD) with one meeting coinciding with AE’s Annual Conference
  • identified new members to join the EWGPWD for the new mandate of the group starting in November 2016 and ensured that 11 national organisations are represented in the group
  • saw the work of the European Working Group recognised and given the international “Mano Amiga” award
  • involved the EWGPWD in the organisation of the Annual Conference by including representatives in the Programme Committee to help with the selection of abstracts, by inviting them to deliver a keynote presentation and by asking them to organise a special symposium on the experiences of living with dementia
  • involved the EWGPWD in various AE activities, EU projects and research activities where AE is asked to provide the views of people with dementia
  • organised the 26th AE Conference in Copenhagen, Denmark from 31 October to 2 November under the motto “Excellence in dementia research and care” in collaboration with Alzheimerforeningen, the Danish
    Alzheimer’s association
  • involved its Expert Advisory Panel in the selection of breaking research topics and the selection of abstracts
  • attracted 714 participants from 41 countries to the conference including 35 people with dementia
  • organised its Annual General Meeting in the framework of the Annual Conference and elected a new Board with Iva Holmerová (Czech Republic) as new Chairperson, Charles Scerri (Malta) as Vice-Chairperson, James Pearson (UK-Scotland) as Honorary Secretary and Maria do Rosário Zincke dos Reis (Portugal) as Honorary Treasurer
  • updated its member organisations on relevant EU policy developments and involved them in the development of policy positions through AE’s public affairs working group
  • organised its second Alzheimer’s Association Academy in December 2016 which consisted of a series of capacity-building seminars on the working of the European institutions, lobbying activities and the clinical trial process
  • welcomed Alzheimer Albania and the Hungarian Cluster Association as new provisional members and elevated Alzheimer Uniti ONLUS to full member
  • improved collaboration with the INTERDEM network and contributed to two papers on social health and assistive technology
  • continued to play an active role as a member of the European Patients’ Forum
  • reviewed its partnership agreement with ADI and continued to coordinate with ADI to develop common approaches to the ongoing G7, G20, OECD and WHO initiatives in the field of dementia
  • continued its collaboration with AGE Platform Europe, the Interest Group on Mental Health, Well-being and Brain Disorders and the Interest Group on Carers
  •  joined the European Disability Forum as an ordinary member and became a founding member of the European Covenant on Demographic Change
  • started its involvement in three new projects funded by the Innovative Medicines Initiative, namely AMYPAD (Amyloid imaging to prevent Alzheimer’s disease), MOPEAD (Models of Patient Engagement for Alzheimer’s disease) and ROADMAP (Real world outcomes across the Alzheimer’s disease spectrum for better care: multi-model data access platform)
  • continued its involvement in the EU funded projects AETIONOMY, EPAD, EMIF, NILVAD, PACE, PredictND and SMART4MD by representing the views of people with dementia and their carers in the research consortium, by contributing to the ethical discussions and by supporting the communication and dissemination activities towards a non-scientific audience
  • supported INDUCT, MinD and SyDAD, exchange projects funded under the Marie Curie programme
  • developed a number of activities funded thanks to the support of its corporate sponsors and partners and organised three company round tables bringing together the AE Board, representatives of corporate sponsors and AE members
  • published two editions of the Dementia in Europe magazine
  • published on its website dementia-friendly information on ongoing phase III clinical trials conducted in two or more European countries (Clinical Trials Watch)
  • collected 71 national guidelines on the diagnosis, treatment and management of dementia
  • finalised the findings of the European Dementia Monitor and presented them at a lunch debate in the European Parliament
  • developed, in collaboration with the University of Bangor, a survey on carers’ experiences of diagnosis which will be conducted in 2017 in the Czech Republic, Finland, Italy, the Netherlands and the United Kingdom (Scotland) thanks to financial support of Roche