2016: Ethical issues linked to the changing definitions/use of terms related to Alzheimer’s disease
It is a great pleasure for me to present this discussion paper on the ethical issues linked to the changing definitions of Alzheimer’s disease (AD). The definitions and the changing use of existing terms, which are the focus of this paper, have developed over several years as a result of biomedical research carried out by renowned researchers and clinicians in the field of AD. Such research is ongoing and it is likely that there will be further developments and adaptations to the terms which have been introduced in recent years. I am hopeful that the knowledge gained will lead to advancements in the treatment, care and support of people with AD, and even, eventually, to delaying or preventing the onset of AD dementia.
As Chair of Alzheimer Europe and as a geriatrician and researcher, I think it is important that we already start to reflect on the possible ethical implications of the changing definitions of AD. Everyone risks developing AD at some point in their life and as a caring, responsible society, it is important that we are all aware of the possible ethical implications of the changing definitions at the level of the individual, communities and wider society. In this way, we can try to ensure that people affected by AD can continue to enjoy the same rights and opportunities as everyone else and play an equal role in society, that they are equally valued and that they are not subjected to any form of discrimination.
I congratulate the Alzheimer Europe Ethics Working Group on having rendered the new definitions of AD and the accompanying AD model more accessible to people who are not necessarily biomedical researchers or clinicians. This is important if people from all walks of life and from different groups (e.g. policy makers, health and social care professionals, the media and the general public), including people who have or may develop AD, are to be able to reflect together on the possible ethical implications of the new definitions. To conclude, I would like to express my sincere gratitude to the members of Alzheimer Europe’s Ethics Working Group, chaired by Dianne Gove (namely, Hilary Doxford, Karine Fauria, Jean Georges, Julian Hughes, Tina Leonard, Anneli Savimäki, Mark Schweda, Sarah Smith, Hinesh Topiwala and Guy Widdershoven), for contributing their expertise and for their extensive work, which made this discussion paper possible.
Chair of Alzheimer Europe
Last Updated: Friday 10 February 2017