By Chloe Waterman and Felicity Slocombe
This blog has been written after we realised the acute similarity and overlap of two theories we use respectively in our PhD research. We hope to show how neuro-culture and neoliberalism are negatively impacting people with dementia, and that by understanding and accepting we live within these cultures in society we may better understand the continued stigmatisation of dementia.
Neuro-culture: Chloe Waterman
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. 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, which details my findings; you may also find relevant the Mental Capacity Act and how it is important for people with dementia.
So, to return to the topic of this blog, what is Neuro-culture? Neuro-culture is a term coined in the 1990s to describe how neuro-science was adopted into culture through increased media exposure 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. Neuro-scientific knowledge, put on this pedestal by society, can become damaging and result in neuro-culture.
Neoliberalism: Felicity Slocombe
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’. 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’. I will first describe what neoliberalism is, and then outline how dementia is often portrayed in healthcare policy.
Some of the key tenets of neoliberalism are governance and individual responsibility. This refers to a responsibility of being able to support yourself, to self-manage your own life. In essence, neoliberalism relates to the economy and politics: it’s 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. When this discourse of neoliberalism feeds into policy and politics we can see how it amplifies responsibility, and even duty to modify your behaviour 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 (p. 108). Whilst this would have an impact on real people’s lives by increasing their longevity, this is often not the framing that is used. Instead, there is a political or economic focus. We see this kind of reporting everywhere in government social policy:
Prime Minister’s challenge on dementia 2020: “Dementia takes a huge toll on our health and care services. With the numbers of people with dementia expected to double in the next 30 years and predicted costs likely to treble to over 350 billion” (p. 3).
The focus is not: “we need to reduce this expected increase in people with dementia for their own wellbeing” – the focus is “look how much these people cost us” – the framing is very ‘othering’.
Dementia: applying All Our Health: This UK Government document says “There is evidence that staying in work for longer can increase years of healthy life expectancy, by giving people meaning and purpose, along with financial security and independence. Employers can play a role in creating these opportunities through implementing policies and practices that support unpaid carers”.
This is a double-whammy of monetary benefit for the state – they aren’t having to pay for professional carers/a care home, and they still gain tax and national insurance benefits from the unpaid carer working alongside caring for their loved one.
They are also implying that by working longer the unpaid carer will “increase years of healthy life expectancy” – possibly suggesting that this could reduce chances of dementia – whilst not citing the “evidence” to support this claim at all.
It all comes back to money and politics!
So, how do neuro-culture and neoliberalism relate to dementia?
Neuro-culture and dementia
So, how does neuro-culture have a potentially harmful impact on people with 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 the self, 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’. This is evident through popular media, gaming, fitness apps and herbal medicines branded as ‘brain boosting’ or ‘brain training’. Hypercognitive ideas were first proposed by Post in 2000. They pose that the value of the brain supersedes the whole person 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 usual, or disease caused degeneration of brain activity. Furthermore, the value 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. 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 to extrapolate such results and apply them to individuals' everyday, complex lives in society. Additionally, media reporting of neurological research must act with caution given the evidence suggesting people are more likely to believe neuroscientific explanations, even where it is entirely irrelevant to the information being provided.
I would like to bring this to the Dementia Researcher blog reader’s attention because it is:
a fascinating explanation for societal influence and,
reminds us of our responsibility to people with dementia to ensure we value the whole person.
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. 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 sure that if they had exercised every day or cut back on processed foods etc. that they would not have developed dementia anyway. This is especially poignant when much evidence for moderating behaviour to reduce dementia risk is inconsistent. 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.
Concluding remarks: Chloe Waterman & Felicity Slocombe
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 is still stigmatised in society, and how we can begin to address the issue to improve people with dementia’s participation and belonging in society.