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Guest Blog – Dementia and stigma through the lenses of neuro-culture and neoliberalism

This blog has been written after myself and my colleague Chloe Waterman realised the similarity and overlap of two theories we use respectively in our PhD research. We hope to show how neuro-culture (Chloe) and neoliberalism (Felicity) are negatively impacting people with dementia. If we can understand and accept that we live within these cultures in society, we may better understand the continued stigmatisation of dementia.

Neuro-culture – I started looking into neuro-culture when trying to find a reason why the rhetoric of dementia is how it is in the UK and why we focus so much on cognition and cognitive factors when assessing capacity in legal settings[1] [1]. This interest stems from my PhD thesis, where broadly, I am investigating how people with dementia are affected by mental capacity law in England and Wales. For further information on this, visit my blog [2], which details my findings; you may also find relevant the Mental Capacity Act [3]  and how it is important for people with dementia [4].

So, to return to the topic of this blog, what is Neuro-culture? Neuro-culture [5] was a term coined in the 1990s to describe how neuro-science was adopted into culture through increased media exposure of neuro-science and a growing fascination with explaining human behaviour through mapping the brain. Neuro-science is popularised, the negative impact being that neuro-scientific data is published in the mass media without sufficient critical gaze from the audience [6]. Neuro-scientific knowledge, put on this pedestal in society, can become damaging and result in neuro-culture.

Neoliberalism, or neo-liberalism, is a term used to describe the 20th-century resurgence of 19th-century ideas associated with free-market capitalism.

Neoliberalism – My interest in neoliberalism was sparked by how it relates to a part of my PhD project on media representations of dementia and their possible link to fear of developing the condition – otherwise known as ‘dementia worry’ [7]. For example, what are people’s responses to media content which describes dementia as a ‘living death’ or which claims you can ‘take a walk to keep dementia at bay’ [8]. I will first describe what neoliberalism is, and then outline how dementia is often portrayed in healthcare policy and how this links back to the affect of neoliberal ideas on individuals with dementia.

Some of the key tenets of neoliberalism are governance and individual responsibility [9]. This refers to a responsibility of being able to support yourself, to self-manage your own life [10]. In essence, neoliberalism relates to the economy and politics: its ideology is focused on economic efficiency, reducing public funding, and privatising public services such as transport and healthcare. Neoliberalism promotes the idea that each individual is responsible for their own health, rather than the state having an ethical responsibility of care [9]. When this discourse of neoliberalism feeds into policy and politics we can see how it amplifies responsibility, and even the duty to modify your behaviour [11] to avoid ill-health.

Dementia in healthcare policy is repeatedly described in monetised ways – for example, the money that could be “saved” through the delaying of dementia onset [10] (p. 108). Delaying dementia onset would have an impact on people’s lives through increasing their longevity, but this is rarely the framing that is used. Instead, there is a political or economic focus. We see this kind of reporting everywhere in government social policy:

So, how do neuro-culture and neoliberalism relate to dementia?

The changing global demographic characteristics of dementia have led to worldwide predictions of unaffordable treatment and care costs over the coming decades. Recognition of the economic consequences has encouraged many countries to develop national dementia plans.

Let’s start with Neuro-culture and dementia. Surely it is best to know more about the brain to help treat and diagnose dementia? This much is true. But when culture and society begin to adopt the idea of the brain as the central and most important part of ourselves, to be protected and improved and the source of emotion, behaviour and disease, we see issues arise. Neuro-culture exists at the cultural and societal levels of consciousness. This culture acts as an incubator for hyper-cognitive ideals. This is where we value the idea of a ‘healthy brain’ [15]. This is evident through popular media, gaming, fitness apps and herbal medicines branded as ‘brain boosting’ or ‘brain training’. Hyper-cognitive ideals were first proposed by Post in 2000 [16]. They pose that the value of the brain supersedes the whole person’s value. A person with a healthy brain will be valued more than a person with an unhealthy brain in a neuro-culture society and idolises the unrealistic demands of hyper-cognition (such as productivity in society). Hypercognitive ideals do not allow for normal, or disease caused degeneration of brain activity. Furthermore, the value of people is solely placed in the brain; the person is reduced to the cerebral subject, a “walking brain”.

We now arrive at the individual level of the impact of neuro-culture, the theory of brainhood [17]. Any person in a neuro-cultured society, where hyper-cognitive ideals are promoted, has their personhood solely in the brain and therefore becomes a cerebral subject. People with dementia, or any brain disorder, are valued less in society because their personhood is reduced to being located within the damaged or deteriorated brain.

Socially, this equals an uphill struggle for persons with dementia to have equal access to their legal rights (a focus of my thesis) and equal standing in their private and public lives. We must, as a society, become aware of this disabling rhetoric. Neuro-science is not at fault, but we must be careful when generalising such results and applying them to individuals’ everyday, complex lives. Additionally, media reporting of neurological research must act with caution given the evidence suggesting people are more likely to believe neuroscientific explanations [18], even where it is irrelevant to the information being provided.

I would like to bring this to the Dementia Researcher blog reader’s attention because it is:

Then we think of neoliberalism and dementia. Those diagnosed with dementia face a neoliberal stigmatisation: that they have not exercised control over health and lifestyle factors which could have delayed onset of or reduced chances of developing dementia. Dementia under a neoliberalist viewpoint represents a failure to age successfully, punishable by stigmatisation and isolation [19]. On the individual level this could be leading to a delay in people seeking a diagnosis, and even with doctors being reluctant to give someone a dementia diagnosis [20] – in their view that to label someone as having dementia is to provide opportunity for them to be stigmatised.

I am not trying to deny links between lifestyle factors and dementia onset. I am more against the definitive message the reporting of such portrays to people diagnosed with dementia: “It’s your own fault”. Lifestyle factors may have played a factor, but we cannot know for certain at an individual level that if a person had exercised every day or cut back on processed foods etc. that they would not have developed dementia. This is especially poignant when much evidence for moderating behaviour to reduce dementia risk is inconsistent [21]. There is still much we do not know about dementia and to jump the gun on causation is to stigmatise those living with dementia, and those who love and care for them.

Final thoughts…

We hope through this examination of neoliberalism and neuro-culture it is clear how people with dementia, regardless of actual deficits experienced due to the dementia, are placed in a disadvantaged position within society. Further work is needed to de-stigmatise dementia, and perhaps through examining society with these theoretical lenses we can begin to understand why dementia faces stigma, and how we can begin to address the issue to improve people with dementia’s participation and belonging in society.


[1] [22] We moved from the ‘living death’ rhetoric popular in the early 2000’s, https://www.theguardian.com/society/2008/feb/17/mentalhealth.health [23] to the ‘living well with dementia’ campaigns we see today, https://www.gov.uk/government/publications/living-well-with-dementia-a-national-dementia-strategy [24] . Dementia is represented as personally preventable, and those with dementia as burdens on society, despite changes in societal campaign messaging (for example see https://www.theguardian.com/society/2022/jan/06/number-adults-with-dementia-exceed-150-million-2050-study [25]).


Felicity Slocombe

Authors

Felicity Slocombe [26]is a first year PhD Student from Loughborough University. Felicity’s research focuses on identity and dementia and how identity can be managed interactionally – how we can help support identity of people living with dementia through our conversations. Driven by a family connection to dementia, and writing each month on a range of topics from her work, and that of her wider group ACTInG (Applied Cognition Technology and Interaction Group), and sharing news from her training and events.

Follow @fliss_slocombe [27]

 

Chloe Waterman

Chloe Waterman [28] is a PhD Student at University of Birmingham and Research Associate at Kings College London. Her research investigates how people with dementia are affected by mental capacity law in England and Wales. Chloe uses discourse and conversation analysis to conduct this socio-legal research, and work at King’s, Chloe is involved with projects investigating how community led support programmes work, and how digital tech innovations can be used to improve social wellbeing for older community dwelling adults.

Follow @ChloeEWaterman_ [29]