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Representing dementia: normality, nuance and advocacy

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Topics: 
communication, dementia awareness, education and training
Josh Mallalieu illustration

I’m currently writing up my PhD on dementia representations at the University of Nottingham. In it, I work with 51 individuals who are affected by dementia, either through having a diagnosis, or being a carer, supporter or family/friend of someone who does. In our focus groups and interviews, we explore participants’ personal experiences and representations of dementia, and consider how different people react to a selection of dementia-related images and language examples drawn from popular media (mostly newspapers, charities, language guidelines and image banks).

Since September is World Alzheimer’s Month and dedicated to raising awareness about dementia, today I want to talk about some of the recommendations for representing dementia that came out of these sessions. These can be divided into three main points, explored below…

1) Normalise dementia

Participants note the increasing prevalence of dementia in everyone’s lives and social networks. Although this helps normalise the condition, the media have a ‘powerful role’ to play to normalise dementia as part of life and reduce the fear and stigma currently surrounding it. Individuals suggest swapping out sensationalist depictions for ‘more facts’ and an overall ‘truer story’ about the day-to-day challenges that people face. The hope is to ground representations in more ‘familiar’ and ‘personal’ spheres, and in doing so establish that ‘there is life after the diagnosis’. 

2) Provide more nuanced representations

a) The ‘diverse face’ of people with dementia

In order to normalise dementia, representations of people with dementia also need to become less reductive. Participants ask that representations reflect ‘the diverse face of dementia’, which is too often conflated with one type (Alzheimer’s disease), one symptom (memory loss) and one demographic (people over the age of sixty-five). Such representations generate tensions between a person’s ‘reality’ and the social ‘preconception’ of what dementia means, which negatively impacts the lives of people affected – even more so for individuals who do not fit the stereotype of an older person with Alzheimer’s disease.

b) Multi-faceted representations of experiencing dementia

Moreover, dementia representations are currently dichotomised into either ‘tragedy’ or ‘living well’ narratives (McParland, Kelly and Innes, 2017). In response, participants call to balance both the ‘positives and negatives’ of life with dementia, including the ‘sad side’ and ‘moments of great humour’. The experience of dementia must be allowed to be a nuanced, ‘multi-headed thing’.

c) Expanding beyond biomedical understandings

Increasing nuance includes expanding how we frame dementia, so that it is not simply a biomedical disease, but also a social, relational and structural concern (e.g. ‘I would really like to see a move away from the clinical, medical, stuff [to the] more personal’). As such, one carer notes the need to highlight that people can have ‘fun’ because of ‘what is available to them’. The importance of opportunities, such as joining exercise groups and choirs, or accessing the local park for a walk, needs to be better considered when discussing dementia, since these can either empower or disempower people with dementia and carers.

3) Better advocate for people with dementia

Overall, popular representations hold great potential for supporting people with dementia. To do this, the personhood and rights of people need to be recognised rather than undermined, as someone with dementia is ‘still the same person’, even if ‘certain traits […] aren’t there’. Of course, discrimination intersects with a range of social factors, such as age, race, class and gender. One person with dementia talks about how being ‘older in age’ means being ‘side-lined’, and that, subsequently, ‘a lot of memories, a lot of expertise […] gets lost’. The recommendation here, then, is to recognise the ‘expertise’ of people with dementia and carers/supporters, who provide an alternative ‘understanding’ to more traditional experts, such as doctors or researchers, and can give ‘insight into how we are actually working, and reacting and talking’.

As one person with dementia tells me, ‘the more we can use the media, the more people realise that we, we are ok and and that we aren’t to be feared’. It is vital that people with dementia, and carers/supporters are better listened to and recognised as ‘experts by experience’ (Parveen et al., 2018), something that is increasingly established in health and research fields but that is yet to reach society more broadly. The more perspectives that are considered, the more nuanced and comprehensive social understandings of dementia can become. This can better reflect that ‘everybody’s dementia’s different like everybody’s fingerprint is different’, and better support people affected by dementia.

 

References

Parveen, S. et al. (2018) ‘Involving minority ethnic communities and diverse experts by experience in dementia research: The Caregiving HOPE Study’, Dementia, 17(8): 990–1000.

Mc Parland, P., Kelly, F. and Innes, A. (2017). Dichotomising dementia: is there another way? In Paul Higgs and Chris Gilleard (eds). Ageing, Dementia and the Social Mind, Hoboken, UK: John Wiley & Sons, pp. 83-94.

Acknowledgements

Thank you to Josh Mallalieu for creating these original illustrations; you can follow Josh at:instagram.com/joshmallalieu_art.

Thank you also to my supervisors, Kevin Harvey, Tom Dening and Daniel Hunt, for their guidance throughout this project.

Author’s note

I welcome any questions or suggestions that people have for this topic. Please do feel free to get in touch either in the comments section or by emailing me at Emma.Putland@nottingham.ac.uk  

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