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2016: Ethical issues linked to the changing definitions/use of terms related to Alzheimer’s disease

This discussion paper has been prepared by a multi-disciplinary group of experts in the field of ethics, the experience of dementia, ageing, psychiatry, psychology, dementia research and policy. This group was set up by Alzheimer Europe to respond to growing concerns about the ethical implications linked to the changing defi nitions/use of terms related to Alzheimer’s disease with regard to individuals, families, informal carers, health/social care professionals, researchers, the media and policy makers. We would like to express our utmost gratitude to the following members of this group for having generously shared their expertise and invested their time and energy during 2016 to make this publication possible (further details about the experts can be found in Appendix 1):

  • Ms Hilary Doxford, Vice Chair of the European Working Group of People with Dementia, United Kingdom
  • Dr Karine Fauria, Barcelonaβeta Brain Research Center, Spain
  • Mr Jean Georges, Alzheimer Europe, Luxembourg
  • Dr Dianne Gove, Alzheimer Europe, Luxembourg
  • Prof. Julian Hughes, University of Bristol, United Kingdom
  • Ms Tina Leonard, Alzheimer’s Society of Ireland
  • Dr Anneli Sarvimäki, The Age Institute, Finland
  • Dr Mark Schweda, University Medical Center Göttingen, Germany
  • Dr Sarah Smith, School of Dementia Studies, Bradford University, United Kingdom
  • Dr Hinesh Topiwala, Centre for Dementia Prevention, University of Edinburgh, United Kingdom
  • Prof. Guy Widdershoven, VU University Medical Center, Amsterdam, the Netherlands



Last Updated: Wednesday 15 February 2017


  • Acknowledgements

    The discussion paper on ethical issues linked to the changing definitions/use of terms related to Alzheimer’s disease received funding under an operating grant from the European Union’s Health Programme (2014-2020). The content of this publication represents the views of the author only and is his/her sole responsibility. It cannot be considered to reflect the views of the European Commission and/or the Consumers, Health, Agriculture and Food Executive Agency or any other body of the European Union. The European Commission and the Agency do not accept any responsibility for use that may be made of the information it contains.
  • European Union