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Guidelines

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

Guidelines for reflection linked to the perception of dementia

In the following guidelines, the term “perception” is used to refer to the ideas, beliefs, mental images, feelings and thoughts that we have about dementia and people with dementia.

  • Look beyond the dementia to the person. Dementia is just one aspect of a person’s identity.
  • Avoid thinking in terms of “us” and “them”. People with and without dementia are all part of the same society.
  • Try to consider people with dementia as the same people as before they had dementia.
  • Be attentive to what people with dementia are saying about their experience.
  • Acknowledge the diversity of people with dementia.
  • Strive for a nuanced perception of dementia.
  • Pay attention to positive images such as people with dementia enjoying life, interacting with others or involving themselves in community, social and political life. 
  • Be aware that people with dementia have something to offer
  • Avoid dichotomous thinking about dementia and considering people with dementia as “the problem”. 
  • Avoid generalising about the experience and impact of dementia on the basis of limited information.
  • Bear in mind that media accounts, articles, films and even documentaries offer a particular perspective of dementia and not the only “truth” about it.
  • Reflect on whether your perceptions of dementia are based on, or result in, certain unfounded assumptions.
  • Consider to what extent the mental images you have of people with dementia are perhaps influenced by negative stereotypes or clichés.

Guidelines for reflection linked to the portrayal of dementia

In the following guidelines, the term “portrayal” is used to refer to the words, images and any form of representation which results in the possible communication of information or feelings about dementia and people with dementia.

Be respectful

  • Convey respect for people with dementia through your choice of words and images.
  • Ask yourself how you would like to be portrayed if you had dementia. 
  • Reflect on ways to capture the dignity, personhood, individuality and citizenship of the people you are portraying.
  • Avoid portraying people with dementia as “other”, fundamentally different or inhuman.
  • Avoid reducing people to numbers, objects, medical cases and problems.

Provide a nuanced image of dementia and people with dementia

  • Strive for a balanced portrayal of dementia which acknowledges achievements and remaining capacities as well as losses and difficulties.
  • Familiarise yourself with different frames, use them when appropriate with caution and do not hesitate to propose a counter-frame.
  • Avoid portraying dementia in a way that is deliberately alarmist, frightening or based on stereotypes and clichés.
  • Don’t hide aspects of dementia which people may find disturbing but put those aspects into perspective and context. Show how those aspects of dementia are part of a much bigger picture which is not all negative.
  • Show how dementia affects people in different ways.
  • Portray people with dementia from a wide range of sub-groups within society and from all walks of life.

Inform yourself and others

  • Make an effort to talk to people with dementia and to obtain their feedback with regard to the issues you intend to portray or report. 
  • Know your facts and figures as well as the overall topic.
  • Put facts and figures into perspective and give your target audience the means to access more information should they require it.
  • If portraying a certain aspect of dementia which some people might find disturbing, provide details of an Alzheimer Association or other organisation where they can obtain support.

Be aware of what you and others are communicating

  • Consider not only the message you wish to communicate but also the different possible ways it might be interpreted.
  • Question your own assumptions about dementia.
  • Choose your words, metaphors and images carefully.
  • Consider what the words you use when talking about dementia or people with dementia imply and whether you personally agree with those implicit assumptions.
  • When communicating for a particular reason to a particular audience (i.e. strategically), reflect on how people with dementia might feel about your portrayal.
  • Reflect on how people with dementia are portrayed by others, what kinds of messages are being communicated and possible reasons for trying to convey a particular perspective.
  • Be prepared to challenge the way dementia is portrayed if you feel that it is inaccurate, disrespectful or misleading.

 

 
 

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
 
 

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