In 2017, Alzheimer Europe:
- Provided a voice to people with dementia and
- organised four meetings of the European Working Group of People with Dementia (EWGPWD) with one meeting coinciding with AE’s Annual Conference and one with a lunch debate in the European Parliament
- 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 one keynote presentation and by asking them to organise a special symposium on the experience of living with dementia
- involved the EWGPWD in various EU projects where AE is asked to provide the views of people with dementia
- involved the Chairperson of the European Working Group of People with Dementia as a full voting member at AE Board meetings
- ensured people with dementia and carers were represented in all AE projects and working groups
- collaborated with the Alzheimer Europe Foundation which provided bursaries for people with dementia attending the AE Conference and awards for the best conference posters
- Made dementia a European priority and
- coordinated with the Maltese EU Presidency and attended a meeting of EU government experts on dementia in Malta
- continued its work with the European Alzheimer’s Alliance and counted 125 Members of the European Parliament from 27 EU countries as members of the alliance by the end of the year
- involved members of the European Alzheimer’s Alliance in the organisation of two lunch debates in the European Parliament
- organised three company round tables bringing together the AE Board, representatives of corporate sponsors and AE member organisations to discuss the progress of the organisation’s different corporate projects,
- published two editions of the Dementia in Europe magazine,
- continued working 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
- organised two face-to-face meetings of the public affairs committee for an exchange on EU and national policy developments and campaigns
- 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
- collaborated with Alzheimer’s Disease International on its campaign to make dementia a priority at WHO, OECD, G7 and G20 level and welcomed the adoption of the WHO Global Action Plan on Dementia as a result of this campaign,
- played an active role on the Patients’ and Consumers’ Working Party of the European Medicines Agency
- Promoted a rights-based approach to dementia and
- identified the ethical implications of recognising dementia as a disability as the priority of the work of its European Dementia Ethics Network
- set up a working group comprised of ethicists, clinicians, researchers and people with dementia and carers to meet twice in 2017 to discuss the ethical implications of recognising dementia as a disability
- published a report with the results of the literature review and recommendations on the recognition of dementia as a disability
- joined the European Disability Forum to collaborate with other European organisations on the development of a European disability strategy and the implementation of the UN Convention on the Rights of Persons with Disabilities (UNCRPD)
- participated with the EWGPWD in the 4th European Parliament of Persons with Disabilities.
- continued working with the Council of Europe and contribute to ongoing discussions on legal capacity, guardianship systems and bioethics
- Supported dementia research and
- 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
- 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
- organised the 27th AE Conference in Berlin, Germany from 2 to 4 October under the motto “Care today, cure tomorrow” in collaboration with Deutsche Alzheimer Gesellschaft, the German Alzheimer’s association
- involved its Expert Advisory Panel in the selection of breaking research topics and the selection of abstracts
- attracted 742 participants from 41 countries to the conference
- improved the collaboration with the INTERDEM network and signed a memorandum of understanding outlining the areas for future collaboration
- collaborated more closely with the European Alzheimer’s Disease Consortium (EADC) and participated in EADC meetings
- issued a call for abstracts to be submitted under the following four key areas: research, policies and strategies, innovative care and dementia-friendly society
- evaluated participants’ satisfaction with the conference programme and practical organisation and 96.43% of surveyed participants confirmed they would recommend the conference to their colleagues
- identified care standards in residential care as the focus of its 2017 Yearbook, developed national reports describing the situation in different European countries, produced a comparative report with the findings and identified a number of best practices in this field
- continued to partner with Newsweaver for the sending of its e-mail newsletter and expanded the list of people receiving the newsletter to 7,726
- promoted its website and attracted 651,622 unique visitors to its website
- ensured social media were a full part of the organisation’s communication activities and ended the year with 7,500 Twitter followers and 7,175 Facebook likes
- continued to engage with the Innovative Medicines Initiative, the Joint Programme Neurodegenerative Diseases Research (JPND), Horizon2020 and the European Innovation Partnership on Active and Healthy Ageing to identify additional opportunities to participate in EU projects
- continued its active involvement in a number of EU funded projects 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:
- AETIONOMY (development of an aetiology-based taxonomy of dementias)
- AMYPAD (Amyloid imaging to prevent Alzheimer’s disease)
- EMIF (European Medical Information Framework)
- EPAD (European Prevention of Alzheimer’s Dementia)
- MOPEAD (Models of Patient engagement in Alzheimer’s disease)
- PACE (effectiveness of palliative care for elderly people in long term care facilities in Europe)
- PredictND (objective and systematic ICT-based approach for the diagnosis of neurodegenerative
diseases) - SMART4MD (Support, Monitoring And Reminder Technology for Mild Dementia)
- ROADMAP (Real world outcomes across the AD spectrum for better care)
- collaborated with the following EU projects
- INDUCT (Interdisciplinary Network for Dementia Utilising Current Technology)
- MinD (Designing for People with Dementia)
- SYDAD (Synaptic Dysfunction in Alzheimer’s Disease)
- ended its collaboration with the project
- SMART4MD (Support, Monitoring And Reminder Technology for Mild Dementia)
- developed a number of projects funded thanks to the support of its corporate sponsors and partners
- made available on its website dementia-friendly information on phase III clinical trials conducted in Europe
- carried out a survey of 1,409 carers’ experiences of a diagnosis in the Czech Republic, Finland, Italy, the Netherlands and the United Kingdom (Scotland) thanks to an educational grant by Roche and launched the top line results at its Annual Conference
- Strengthened the European dementia movement and
- 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 Alzheimer’s Association Academy in December 2017 and develop a programme based on the subjects and issues identified by its members
- financially supported the attendance of representatives from national organisations at the Alzheimer’s Association Academy and AE’s public affairs meetings
- organised quarterly meetings of the AE Board to monitor the association’s financial situation and the implementation of its work plan
- carried out the different activities financed under the framework agreement (2015–2017) and the 2017 operating grant provided by the health programme of the European Union
- continued its collaboration with Commission services for the development of a new four-year framework agreement (2018–2021)