2013: The ethical issues linked to the perceptions and portrayal of dementia and people with dementia
In 2009, Alzheimer Europe established the European Dementia Ethics Network with the aim of encouraging ethical reflection on a range of topics of relevance to the lives of people with dementia and their carers. This report reflects the work carried out by a multi-disciplinary working group within the framework of that network to describe 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, we 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. Our ethical reflection focuses 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).
Part 1 sets the scene by explaining how the work was organised and why this topic was chosen. Clearly, there are as many different perceptions of dementia and ways of portraying it as there are people. We have tried to group together those which were similar in some way into a meaningful structure.
Part 2 starts with an overview of explanatory models, which reflect how people make sense of dementia. On the one hand, a historical development can be detected in the focus on certain models at different points in time but on the other hand, some cultural differences were detected and also, it is clear that the various models are not exclusive. For example, some people perceive dementia as part of natural ageing, a biomedical condition or a mental disorder, and at the same time as a disability or due to spiritual forces.
The words and metaphors that people use in connection with dementia are rich in symbolism and significance, sometimes used strategically to achieve certain goals, sometimes used without much reflection. The impact of the language surrounding dementia is considerable and reflection on the possible ethical implications suggests that, albeit with a few exceptions, there are very few expressions which can be considered as wholly “good” or “bad”. For one person a word or metaphor might represent hope or help them to cope, whereas for another it sums up dread and loss of the self. Some words and metaphors are used liberally and paint a very biased picture of dementia, whilst others are avoided and considered demeaning, depersonalising and insulting. Even standard medical terms are sometimes used with great caution due to an awareness of the possible impact on people’s lives and wellbeing. Words clearly matter. They describe, communicate and reinforce our current perceptions of dementia. With awareness, we can try to use them positively to challenge portrayals of dementia and promote a more positive image of dementia and people with dementia.
An exploration of the way in which the existence and experience of dementia are perceived and portrayed reveals a range of philosophical beliefs about what it means to be a person and how dementia affects this experience and state of being. Turning to the perceived characteristics of dementia, we find a few key stereotypes and rather limited perception of how people are affected by dementia, what they look like and how they act. Here the challenge perhaps lies in acknowledging the diversity of people with dementia, interacting with them and reflecting on the numerous factors which influence how they are perceived, portrayed and subsequently treated.
This report reflects a social constructivist philosophy of the way that we make sense of the social world in which we live, which emphasises the importance of interacting with others in a process of meaning making. In today’s society, we are also influenced by the media and films. We therefore reflect on the concept of frames and counter-frames, as a means to present a more nuanced and hence realistic perception of dementia and on the way that the portrayal of dementia in films affects people emotionally and influences their understanding and expectations in relation to dementia.
Having described numerous ways of perceiving and portraying dementia, we consider in Part 3 how this relates to the experience of people with dementia and to what they are telling us. We also highlight some of their reactions towards the way that others perceive and portray them.
In Part 4, we end the report with a few concluding remarks in the form of general guidelines to encourage a balanced perception of dementia and to consider when addressing, referring to or portraying people with dementia. These remarks draw on in-depth reflection on the possible impact of various perceptions and portrayals of dementia. It is hoped that this report will contribute towards the recognition of people with dementia as unique, valued individuals and the promotion of their dignity, wellbeing and rights through greater attention and sensitivity to the way they are perceived and portrayed.
Last Updated: Monday 24 February 2014