Guidelines for the ethical and inclusive communication about/portrayal of dementia and people with dementia

Communication involves sharing or exchanging information including, for example, news, ideas and feelings. Portrayal means how somebody or something is shown or described in a picture, play, book, speech, report or other means of communication. The two are closely related and undeniably of great importance to people with dementia. How we represent dementia in words and images can influence how we think about and treat people with dementia. It has implications for the lives of millions of people worldwide, for their rights (i.e. to full and equal participation in society, and access to healthcare and treatment) and for relationships and emotional wellbeing. It can also significantly influence decisions about research priorities, service development and policy.

The European Working Group of People with Dementia (EWGPWD) has been working on this issue throughout 2022 and has developed guidelines for the media, researchers, journalists, policy makers, and indeed anyone who communicates about or portrays dementia and people with dementia in the public domain. The following guidelines are aimed at provoking greater reflection and increasing awareness about these issues.

It is not our intention to act as the “word police” and our guidance goes beyond the choice of individual words. As we explain in the guidelines, preferences and objections to certain words, whilst important, vary greatly. Rather, we would like 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.
This guidance concerns information and images in the public domain or targeted at specific groups but not one-to-one interactions. It is the end product of work carried out by people with dementia for people who do not have dementia. People with dementia use language, sometimes including metaphors, to convey their personal experience of dementia at a particular moment in time, whereas words and images communicated by others tend to be understood as representing or summing up the experience of all people with dementia, often reducing people with dementia as a group to sufferers or patients or portraying every aspect of dementia as a devastating natural catastrophe.

We therefore seek your support in helping us to ensure a balanced and positive communication and portrayal of dementia and people with dementia, and in contributing towards a more inclusive and respectful society for us and for our partners, friends, relatives and fellow citizens who may develop dementia at some point.