Luxembourg, 30 January 2023 – Alzheimer Europe has today launched a new set of guidelines for the ethical and inclusive communication about/portrayal of dementia and people with dementia. The guidelines, which are structured around 14 statements, have been developed in tandem with the European Working Group of People with Dementia (EWGPWD) and are targeted at the media, researchers, journalists, policy makers and anyone responsible for the portrayal of or communication about dementia in the public domain.
In 2013, Alzheimer Europe set up an ethics working group to explore the different ways that people with dementia are perceived and portrayed within society and to consider the ethical implications of this. On the basis of an extensive literature search, the group explored the perceptions and portrayals of dementia of different groups in society (e.g. the general public, people with dementia, carers and healthcare professionals, to name but a few), the use of language and the influence of the media and film-makers. This ethical reflection focused on ways in which various ways of perceiving and portraying dementia are likely to be beneficial or potentially harmful to people with dementia (e.g. in terms of their dignity, wellbeing, autonomy, rights, personhood, relationships and role in society). Now, almost a decade later, members of the EWGPWD have revised and built on this work to develop a set of guidelines for the ethical and inclusive communication about/portrayal of dementia and people with dementia. The guidelines are aimed at provoking greater reflection and increasing awareness about this issue.
The members of the EWGPWD were keen to emphasise that they did not want to act as the “word police” and that their guidance goes beyond the choice of individual words. This is important because preferences and objections to certain words, whilst important, vary greatly, not only between different countries but also within different communities and social groups. Rather, their goal was to offer constructive and friendly guidance to help raise awareness of the need to communicate in an ethical and inclusive manner. This means paying attention to messages and images that we communicate and use, and trying to ensure that they convey respect for people with dementia, that they are not harmful (e.g. stigmatising, insulting or degrading) and that they both reflect and promote the inclusion of people with dementia from all walks of life, including those from marginalised groups, in society.
People with dementia use language, sometimes including metaphors, to convey their personal experience of dementia at a particular moment in time and it is important that they have the freedom to express their experience and feelings in whatever way they see fit. Words and images communicated by others, however, tend to be understood as representing or summing up the experience of all people with dementia, reducing people with dementia as a group to “sufferers” or “patients”, or portraying every aspect of dementia as a devastating natural catastrophe. This is why it is important for people who do not have dementia to pay particular attention to the words and images that they use and the underlying messages that they may be conveying. The guidelines are structured around 14 statements, each constituting a piece of advice and followed by a more detailed explanation, and in some cases by a few quotes from members of the EWGPWD and one from a supporter. Chris Roberts, Chairperson of the EWGPWD, said: Our diagnosis should not define us but words and images sometimes do. Respectful communication costs nothing but means everything.”
The new guidelines can be downloaded from the Alzheimer Europe website, at:
For further information, contact: Dianne Gove, Director for Projects, Alzheimer Europe, 14, rue Dicks, L-1417 Luxembourg, Tel.: (+352) 29 79 70, Fax: (+352-29 79 72) Dianne.gove@alzheimer-europe.org, https://www.alzheimer-europe.org/
Notes to editors: Alzheimer Europe is the umbrella organisation of national Alzheimer associations and currently has 41 member organisations in 37 European countries. The mission statement of the organisation is to change perceptions, practice and policy to ensure equal access of people with dementia to a high level of care services and treatment options.
The European Working Group of People with Dementia was launched by Alzheimer Europe and its member associations in 2012. The group is composed entirely of people with dementia, who are nominated by their national Alzheimer associations. They work to ensure that the activities, projects and meetings of Alzheimer Europe duly reflect the priorities and views of people living with dementia. The Chairperson is also an ex-officio member on the Board of Alzheimer Europe with full voting rights.
Alzheimer Europe’s guidelines on ethical and inclusive communication about people with dementia received funding under an operating grant from the Citizens, Equality, Rights and Values programme Programme. The views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or European Commission. Neither the European Union nor the granting authority can be held responsible for them.
