About — MeNDD Project - Improving Communication in Dementia

Improving Communication in Dementia

About MeNDD

Risks and responsibilities in health communication

In dementia, as previously with cancer and AIDS, metaphors (such as ‘cognitive decline’, ‘the living dead’, ‘the body is there but the person is gone’) frame the narrative of the disease, influencing how dementia and people living with dementia are perceived and thus also how they may perceive themselves.
There are two main groups of metaphors commonly used to describe dementia (Frezza, 2018). There is a frame of dementia as decline, based on the idea that ‘going down’ equals ‘going bad’. It portrays a ubiquitous and hopeless narrative of dementia as a decline involving memory, all of cognition and then the whole individual. This holds little hope and can lead to negative stereotyping and stigmatisation, with metaphors such as ‘the living dead’ (Gove et al., 2013). By contrast, there is a more recent frame of plasticity based on the idea that the brain, also the aged brain, is plastic or malleable and thus it can be trained - with metaphors such as ‘brain fitness’. This is a more optimistic narrative, which, however, can be seen as offering too much hope and unrealistic expectations (George & Whitehouse, 2011). In addition, it may promote people with dementia’s own individual responsibility in prevention and care (Peel, 2014). These opposed ways of interpreting and evaluating dementia and people with dementia can cause serious issues in dementia communication.

Metaphors are valuable tools. In health communication, they are often used to translate complex health issues in simpler terms, yet their use is not neutral: they can empower or disempower people (Semino et al., 2018). Ten years has passed since the Alzheimer Europe’s report (Gove et al., 2013) underlined the ethical risks of using metaphor in dementia, including stigmatisation an influence on the wellbeing of people with dementia. Yet, we still lack an adequate understanding of the potential risks and ethical responsibility needed when metaphorical narratives are used in dementia discourse. On an individual level, we need to develop a deeper understanding of how people living with dementia see themselves, talk about themselves, and wish to be seen. On a societal level, the spread of negative stereotypical metaphors (such as ‘the living dead’ and ‘the silent tsunami of dementia’) increases the risk of stigmatisation of people with dementia and hinders the development of respectful language in dementia communication.
Metaphorical Narratives in Dementia Discourse (MeNDD) links the new Responsible Research and Innovation (RRI) approach with language awareness and discourse analysis applied to dementia communication at both individual and societal level. MeNDD is an innovative interdisciplinary project. It aims to promote social awareness by building a model for using metaphorical narratives ethically and responsibly. We hope that the results of our research could be applied in practice, for instance, in public awareness campaigns, in specialised training for health professionals, and in developing more inclusive healthcare practices for people living with dementia.

Quoted texts

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Gove, D., Wallace, D., Gerritsen, D.L., Gombault, B., Gzil, F., Kasparova J., et al. (2013). The ethical issues linked to the perceptions and portrayal of dementia and people with dementia. Alzheimer Europe’s 2013 Work Plan.