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2013: The ethical issues linked to the perceptions and portrayal of dementia and people with dementia

It is with great pleasure that I present this report which explores the way that people with dementia are both perceived and portrayed within society and which reflects on the ethical implications of this. The way we look at dementia differs from one person to the next and according to the situation or context. This report provides a non-judgemental overview and reflection on the possible consequences for people with dementia and their carers of the different ways that members of society perceive dementia and communicate those perceptions to others (in words, images and through policies and actions).

The report is the result of the work by a multidisciplinary group of experts in old age psychiatry, psychology, dementia, philosophy, cultural sociology, nursing and media studies, as well as a person with dementia and carers.  The members of the working group generously donated their time and expertise throughout 2013 and in so doing, made it possible to publish this report.  I would therefore like to express my gratitude to Dianne Gove (Chair), Debby Gerritsen, Bénédicte Gombault, Fabrice Gzil, Jana Kasparkova, Jan Oyebode, Sirpa Pietikaïnen, Christine Swane, Baldwin Van Gorp, Aino Valtanen, Daphne Wallace and Richard Wallace.  

I hope that this report will contribute towards increasing awareness of the many different ways of looking at dementia, and to the realisation that dementia is not only a medical condition but also a complex social phenomenon.  I trust that the report will encourage reflection on the importance of the meanings that we construct around dementia and the development of a more inclusive, respectful and nuanced understanding of dementia. Finally, I hope that you enjoy reading about the many different ways that dementia is perceived and portrayed and that the sections on the related ethical issues lead to further personal reflection and have a positive impact on your attitudes, feelings and possible future experience of dementia.

Heike von Lützau-Hohlbein


Alzheimer Europe



Last Updated: Monday 24 February 2014


  • Acknowledgements

    The above information was published in the 2013 Report "The ethical issues linked to the perceptions and portrayal of dementia and people with dementia" as part of Alzheimer Europe's 2013 Work Plan which received funding from the European Union in the framework of the Health Programme. Alzheimer Europe gratefully acknowledges the support it has received from Fondation Médéric Alzheimer Europe for the development and publication of this report.
  • European Union
  • Fondation Médéric Alzheimer