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2020 Work Plan

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2020 Work Plan

The 2020 Work Plan of Alzheimer Europe was adopted by our Board at its meeting of 9 December 2019 and may be subject to change due to changing circumstances.

Alzheimer Europe Core activities

Objective 1: Providing a voice to people with dementia and their carers

In 2020, Alzheimer Europe will

  • organise 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
  • develop a guide for dementia-inclusive meetings, transport and venues building on the expectations and experiences of EWGPWD members and existing dementia-inclusive initiatives in this field
  • involve 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
  • involve the EWGPWD in various EU projects where AE is asked to provide the views of people with dementia
  • involve the Chairperson of the European Working Group of People with Dementia as a full voting member at AE Board meetings
  • ensure people with dementia and carers are represented in all AE projects and working groups

Objective 2: Making dementia a European priority

In 2020, Alzheimer Europe will

  • collect information on existing training and continuing education programmes existing at national level for health professionals involved in the diagnosis, treatment and care of people living with dementia, produce national reports on existing training and education programmes and develop a comparative report and publish the findings in the 2020 Dementia in Europe Yearbook
  • liaise with the Croatian and German EU Presidencies
  • develop the reformed European Alzheimer’s Alliance with the aim of gathering the support of 100 Members of the European Parliament from all European countries and involve members of the European Alzheimer’s Alliance in the organisation of three lunch debates in the European Parliament
  • coordinate the group of European government experts on dementia and organise two meetings of the group bringing together health ministry officials from at least 15 countries with representatives from the European Commission, the OECD and the World Health Organization
  • play an active role on the Patients’ and Consumers’ Working Party of the European Medicines Agency
  • organise two face-to-face meetings of the public affairs committee for an exchange on EU and national policy developments and campaigns
  • play an active role as a member of the European Patients’ Forum and European Disability Forum and support the development of positions in response to EU policy developments
  • collaborate with Alzheimer’s Disease International on its campaign to make dementia a priority at WHO, OECD, G7 and G20 level

Objective 3: Promoting a rights based approach to dementia

In 2020, Alzheimer Europe will

  • publish reports (in English, French and German) with key recommendations on intercultural care and support targeted at policy makers and service providers with the support of the Robert Bosch Stiftung
  • explore issues related to legal capacity and the rights of people with dementia in decision-making as the priority of its European Dementia Ethics Network and carry out an extensive literature review on this subject, develop recommendations on legal capacity with a view to promote the rights of people with dementia in decision-making and publish the recommendations with the findings of the literature review in the 2020 Ethics report
  • continue its collaboration with the European Disability Forum on the development of a European disability strategy and the implementation of the UN Convention on the Rights of Persons with Disabilities (UNCRPD)
  • continue working with the Council of Europe and contribute to ongoing discussions on legal capacity, guardianship systems and bioethics

Objective 4: Supporting dementia research

In 2020, Alzheimer Europe will

  • continue with the development of its European Dementia Observatory by proactively identifying relevant research developments and communicating them to its member organisations and wider community
  • organise a conference in Bucharest, Romania under the motto “Building bridges” from 20-22 October 2020 with the participation of at least 750 participants from 30 European countries
  • convene a round-table on the prevalence of dementia in Europe
  • carry out a mapping exercise of ongoing EU-funded dementia research projects
  • finalise its project on data sharing policies in dementia research and produce a report with the support of GatesVentures
  • improve the collaboration with the INTERDEM network and the European Alzheimer’s Disease Consortium for the organisation of the conference and the selection of topics to be addressed
  • evaluate participants’ satisfaction with the conference programme and practical organisation

Objective 5: Strengthening the European dementia movement

In 2020, Alzheimer Europe will

  • carry out a membership satisfaction survey to identify the views of AE members on the various activities undertaken by the organisation as a first step towards developing a new strategic plan in 2021
  • update its member organisations on relevant EU policy developments and involve them in the development of policy positions through AE’s public affairs working group
  • organise its Alzheimer’s Association Academy in December  and develop a programme based on the subjects and issues identified by its members
  • organise quarterly meetings of the AE Board to monitor the association’s financial situation and the implementation of its work plan
  • continue to partner with Newsweaver for the sending of its e-mail newsletter and aim to expand the list of people receiving the newsletter to 8,000
  • continue the development of its website and aim to attract 750,000 unique visitors to its website
  • ensure social media are a full part of the organisation’s communication activities and aim to have 15,000 Twitter followers and Facebook likes by the end of the year
  • develop a broad based long-term funding strategy for the organisation.

Other activities and projects

EU Project participation

In 2020, Alzheimer Europe will

  • continue 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,
  • start its collaboration on:
    • Euro-FINGERS: Multi-modal precision prevention toolbox for dementia in Alzheimer’s disease
  • continue 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:
    • AD Detect-Prevent (Alzheimer's Disease (AD) Detect & Prevent - Presymptomatic AD detection and prevention)
    • AMYPAD (Amyloid imaging to prevent Alzheimer’s disease)
    • EPAD (European Prevention of Alzheimer’s Dementia)
    • NEURONET (Efficiently Networking European Neurodegeneration Research)
    • PARADIGM (Patients Active in Research and Dialogues for an Improved Generation of Medicines)
    • PRODEMOS (Prevention of Dementia using Mobile phone Applications)
    • RADAR-AD (Development and validation of technology enabled, quantitative and sensitive measures of functional decline in people with early stage Alzheimer’s Disease)
    • RECOGNISED (Retinal and cognitive dysfunction in type 2 diabetes: unravelling the common pathways and identification of patients at risk of dementia)
    • VirtualBrainCloud (Personalized Recommendations for Neurodegenerative Disease)
  • continue its collaboration with the following research projects
    • DISTINCT
    • MIRIADE
    • SPAN+

Corporate Affairs

In 2020, Alzheimer Europe will

  • continue including phase II and phase III clinical trials being conducted in Europe on the AE website
  • organise 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,
  • develop and publish a European policy document on “Dementia, a European priority” with recommendations for the European institutions, Council of Europe, OECD and WHO
  • publish three editions of the Dementia in Europe magazine (February, June and October)
  • organise three lunch debates in the European Parliament dedicated to presenting the findings and recommendations of the data-sharing project (February), an update on the dementia portfolio of the Innovative Medicines Initiative (June) and the launch of the report on “Dementia, a European priority” (December).

Annex 1: Meetings organised by Alzheimer Europe in 2020

Date

Meeting

Venue

17-18 February

Alzheimer Europe Board

Brussels, Belgium

18 February

European Parliament lunch debate “The Innovative Medicines Initiative and European neurodegenerative diseases research”

Brussels, Belgium

18 February

Company Round Table

Brussels, Belgium

18-20 February

European Working Group of People with Dementia

Brussels, Belgium

19 February

Public Affairs Meeting

Brussels, Belgium

8-9 June

Alzheimer Europe Board

Brussels, Belgium

9 June

European Parliament lunch debate “Data sharing in dementia research”

Brussels, Belgium

9 June

Company Round Table

Brussels, Belgium

9-10 June

Government Expert Group on Dementia

Brussels, Belgium

9-11 June

European Working Group of People with Dementia

Brussels, Belgium

10 June

Public Affairs Meeting

Brussels, Belgium

15-17 September

European Working Group of People with Dementia

Luxembourg, Luxembourg

20 October

Alzheimer Europe Board

Bucharest, Romania

20 October

Annual General Meeting

Bucharest, Romania

20-22 October

Alzheimer Europe Conference

Bucharest, Romania

7-8 December

Alzheimer Europe Board

Brussels, Belgium

8-9 December

Alzheimer’s Association Academy

Brussels, Belgium

8-9 December

Government Expert Group on Dementia

Brussels, Belgium

8-10 December

European Working Group of People with Dementia

Brussels, Belgium

9 December

European Parliament Lunch Debate “Dementia as a European priority”

Brussels, Belgium

9 December

Company Round Table

Brussels, Belgium

 

 
 

Last Updated: Tuesday 04 August 2020

 

 
 

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