Ethical implications of the perception and portrayal of dementia

Abstract

The way we perceive and portray dementia has implications for how we act towards people with dementia and how we address the issue of dementia within society. As a multi-disciplinary working group, established within the framework of the European Dementia Ethics Network of Alzheimer Europe, we aimed to describe the different ways that people with dementia are perceived and portrayed within society and to consider the moral implications of this. In the current paper, we address perceptions of dementia as reflected in explanatory models of its cause and nature, descriptions of characteristics of people with dementia, the use of language, media portrayals and the views of people living with dementia. Academics and professionals could use this exploration to reflect on their behaviour and their use of language regarding people with dementia. About perceptions and the portrayal of dementiaPeople make sense of dementia through the meanings and explanations they give to their personal observations, knowledge, beliefs, expectations and experiences, and through direct and indirect interaction with other people. The meanings and explanations we construct reflect complex processes of attending to some factors while disregarding others (Schacter, 2011). Hence, certain characteristics and ways of making sense of dementia become emphasised whilst others are given little or no attention. The way we perceive and portray dementia has implications for how we act towards people with dementia and how we address the issue of dementia within society, for example, in terms of care, treatment, social inclusion and human rights. As such, our perceptions and portrayals of dementia affect the lives of people with dementia. Since perceptions and portrayals prompt and/or permit actions that may be beneficial or harmful for people living with dementia, we

Negative stereotypes, fear and social distance: a systematic review of depictions of dementia in popular culture in the context of stigma

“…Pescolido et al [17] suggest that the portrayal of dementia in the media influences and reflects cultural stigma. Stereotypes of dementia in the media are that people with dementia are old and severely impaired, passive, and have no quality of life [18,19]. When news and entertainment media reinforce negative stereotypes, this perpetuates stigma [20].…”

Effect of a dementia education intervention on the confidence and attitudes of general practitioners in Australia: a pretest post-test study

“…The confidence of the GPR group, while not as high as supervisors, significantly improved postworkshop, although from a notably low level. This improvement provides insight into the importance of targeting education beyond the traditional biomedical focus typical of much medical education,16 often with minimal focus on therapeutic interventions 17–19. Differences in pretest confidence between the cohorts are not surprising given GPRs are generally younger and less experienced 21.…”

“…It is estimated that one-third of GPs lack confidence in their diagnostic skills, while two-thirds lack confidence in the management of behaviours associated with dementia,7 or feel they have little or nothing to offer patients presenting with dementia,13 with a third of GPs failing to routinely disclose the diagnosis 7 14 15. Similarly, pessimism surrounding dementia prognosis, and inability to offer curative treatment16 may lead to an attitude of ‘therapeutic nihilism’ among GPs,7 11 which reflects a biomedical definition of treatment and an ethos centred around curing people,16 while simultaneously ignoring therapeutic interventions that may benefit people with dementia and their carers 17–19…”

Giving Them a Voice: Challenges to Narrative Agency in People with Dementia

“…Dementia is described in a threatening and apocalyptic way, as a cruel, aggressive, and devastating disease [33,34]. The description of the disease as a “monster” or “invader” that attacks and dominates a person’s mind and body is used often in the media [32,35], reinforcing behavioral patterns that affect the subjective perception of people with dementia, as well as the way in which they are treated and cared for [35,36]. However, in recent decades, there have also been more respectful and heterogeneous narratives of dementia that have raised awareness of the disease and the importance of valuing the needs of those with dementia [22].…”

“…These stereotyped narratives promote stigmatization that reinforces the discrimination and exclusion of people with dementia, affecting not only their quality of life, but also those of their relatives and caregivers [34,35].…”