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A person first, a patient second

In this article we consider some of the non-medical aspects of living with dementia. What kind of language do people with dementia prefer to be used in media such as television, newspapers and magazines; and how do people approach life after diagnosis, for example working and living with dementia?

Language around dementia

There’s a tendency for very negative language about dementia to be used in the media, and this doesn’t always sit well with people who have dementia. For example describing people with dementia as sufferers may disregard the fact that many people continue to live well with a diagnosis of dementia. A number of organisations have produced guidelines for journalists and organisations to use, aiming to reduce the stigma surrounding dementia and encourage language that people with dementia prefer.

The Dementia Engagement and Empowerment Project developed guidelines based on discussion between 20 people with dementia. They suggest avoiding words like ‘dementia sufferer’ and ‘demented’ and suggest alternatives such as ‘people with dementia’, or ‘people living with dementia’. Importantly, they suggest using terminology that people choose for themselves. For example some people may describe themselves as a person with dementia, whilst others might use a more specific diagnosis to describe their condition. The key principles suggested by this project are to recognise that the language we use influences how people with dementia are viewed, and that people with dementia prefer descriptions that are accurate, balanced and respectful.

Life after diagnosis

It’s important to recognise that whilst some aspects of a person’s life may change after a dementia diagnosis, others may not change so much. For example, in Week 3 of this course you’ll meet Colin, who has a diagnosis of dementia with Lewy bodies but continues to be involved socially in activities such as playing bridge. In Week 4 you’ll meet Ken who has a diagnosis of Posterior Cortical Atrophy, and despite retiring Ken continues to do some consultancy work.

The issue of continuing to work with a diagnosis of dementia is an important one, especially for people who have a diagnosis of dementia at a relatively young age (in their 30s-60s). If you’re interested in this issue, take a look at this article from the American Academy of Neurology. The article addresses the fact that some people in the early stages of dementia continue to work, talks through some of the issues involved in making a decision to continue working or not and considers the adaptations that can be put in place to support people in their decision.

What are your thoughts on how we talk about dementia? Do you find discussions about dementia in the media are overly negative? Can you think of examples where the use of language has seemed particularly appropriate, or inappropriate? Feel free to share links to examples in your comments.

Written by Tim Shakespeare

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This article is from the free online course:

The Many Faces of Dementia

UCL (University College London)

Course highlights Get a taste of this course before you join: