Participant 17: Alzheimer Europe (AE), Luxembourg

PI: Jean Georges

Alzheimer Europe is a non-governmental organisation which founded in 1989. Alzheimer Europe operates a common European platform through co-operation among its 37 members, which are all active Alzheimer organisations in Europe (WHO European Region).

Alzheimer Europe is a lobbying organisation promoting dementia awareness, care and research within the EU institutions. This effort includes the European Alzheimer’s Alliance, a group of more than 120 MEPs in the European Parliament, aiming to make dementia a public health priority. The organisation considers its mission “changing perceptions, practice and policy in order to improve the quality of life of people with dementia and their carers”. The strategic plan of Alzheimer Europe defines the priorities of the organisation as:

  • providing a voice to people with dementia and their carers

  • making dementia a European priority

  • promoting a rights based approach to dementia

  • supporting dementia research and

  • strengthening the European dementia movement.

Alzheimer Europe has carried out a number of transnational European projects, namely:

  • the publication of a practical guide for carers of people with dementia which is available in seven European


  • the publication of a book targeted at helping children understand and cope with having a grandparent with


  • an inventory of laws affecting people with dementia and their carers and the development of

recommendations on how to improve the rights of people with dementia and their carers,

  • an analysis of the differences in expectations between male and female carers of people with dementia in

the EPOCH (Equality in the Provision of Care at Home) project,

  • the setting up of a database on rare forms of dementia

  • comparative reports and analyses on national policies in Europe, including national dementia strategies, and

care pathways.

Alzheimer Europe also coordinated the “European Collaboration on Dementia – EuroCoDe” project with funding from the European Commission under its Public Health Programme. This project resulted in consensual prevalence rates, an inventory of guidelines on diagnosis and treatment and guidelines on non-pharmacological interventions, an overview of risk factors and risk reduction and prevention strategies, a report on the socio-economic cost of Alzheimer’s disease and national reports on the social support for people with dementia and their carers Alzheimer Europe has been granted consultative status with the Council of Europe and has been accredited by the European Medicines Agency as a patient organisation complying with the agency’s strict criteria on transparency, democracy, accountability and representativeness. It is also a member of the European Patients’ Forum. Alzheimer Europe collaborates with professional organisations in the field of dementia and was an active member of the Task Force of the European Federation of Neurological Societies for the review of the organisation’s treatment and management guideline.

AE will participate in WP1, WP8 and WP9