dr. Giulia Frezza

With this project, we want to raise awareness of the risks and responsibilities involved in dementia discourse on both an individual and societal level. We want communication about dementia to be open, two-way and ethically responsible.

We imagine a world where persons living with dementia and their carers feel empowered and respected because they are not afraid of how society sees them, relates with them and talks about them.

We started with responsible language use, but language is neither everything nor enough.

 In dementia, as previously with cancer and AIDS, metaphors (such as dementia is decline, people with dementia are zombies, brains are plastic, and brains are machines) frame the narrative of the illness, influencing how dementia and people living with dementia are perceived and thus also how they may perceive themselves.

Dementia discourse presents two major contrasting metaphorical narratives (Frezza, 2018). There is a narrative of dementia as decline, based on the idea that ‘going down’ equals ‘going bad’. It portrays a ubiquitous and hopeless frame of dementia as a slow decline involving memory, all of cognition and then the whole individual. This holds few promises and can lead to negative stereotyping and stigmatisation. By contrast, there is a more recent optimistic narrative of plasticity based on the idea that also the aged brain is plastic or malleable. This narrative holds perhaps too many promises while it may potentially promote people with dementia’s own individual responsibility in prevention and care. These opposed ways of interpreting and evaluating dementia and people living with dementia can cause serious issues in dementia communication.

Metaphors are valuable conceptual 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. Almost ten years passed since the Alzheimer Europe’s report underlined worrying ethical risks of metaphor use in dementia, including stigmatisation and discrimination. Dementia research has shown that people’s attitudes, views and words have a positive or negative influence on people with dementia’s wellbeing. Yet, we still lack an adequate understanding of the potential risks and ethical responsibility required when metaphorical narratives are used in dementia discourse among different social agents, like people with dementia, caregivers, doctors, researchers, and the media. On an individual level, it is necessary to develop a deep understanding of how people living with dementia see themselves, talk about themselves, and wish to be seen accordingly. On a societal level, the spread of negative stereotypical metaphors (such as the zombies 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 interdisciplinary and innovative project working towards a model of social awareness of metaphorical narratives tackling the ethical risks, e.g., stigmatisation, involved in dementia communication. We hope that in the future the results of our research could be applied to reduce these risks 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.