ABSTRACT
Having argued for a more neurocritical dementia studies and provided examples of some of the key areas where critical analyses are currently wanting, this chapter turns to more familiar territory for dementia studies. In it, I critically analyse dementia awareness and anti-stigma campaigns. I begin by charting the development of dementia awareness campaigns as a response to reports of the widespread stigmatisation of dementia. I contextualise this development within the broader trend toward mental health awareness raising as a means of combatting stigma. I argue that the evidence base regarding stigma and dementia has traditionally relied on questionable definitions and interpretations of stigma. I ask what stigma means, exploring several ways in which the concept has been operationalised in research. Drawing on my own research with people affected by dementia, I argue that we need a more conceptually robust approach to understanding people’s experiences of derogatory attitudes and reactions as echoing wider contexts of stigma. This is especially true when it comes to recognising (1) the extent to which stigma is intuitively felt and applied to oneself irrespective of direct discrimination and (2) the biopolitical structuring of that stigma by awareness-raising initiatives that may serve to further the interests of select stakeholders. I argue that discussions of stigma too often individualise and psychologise structural forces that are extrinsic to individuals but that are nonetheless experienced personally and potently. Hence, we need to theorise stigma as something experientially poignant but generated by conditions beyond the personal and interpersonal.
Having unpacked notions of stigma in relation to dementia, I then critically evaluate some of the core tenets of dementia awareness raising as an anti-stigma strategy, arguing that these are predicated on a neuropsychiatric biopolitics that is often perpetuated by uncritical dementia studies. In particular, I focus on two of the claims discussed in Chapter 4: “dementia is not a normal part of ageing” and “dementia is caused by diseases of the brain”. I question the idea that biogenic accounts of psychiatric disorder lead to reduced stigma. Taking a critical gerontological perspective on the separation of dementia from normal ageing, I explore the apparent contradiction of destigmatising a phenomenon by denormalising it. I argue that these claims, and the roles that they play in the wider awareness economy, could risk exacerbating certain forms of stigma, particularly via unintentional othering that resonates with structural disadvantages faced by people affected by dementia. I conclude that awareness raising is another key area where critical dementia studies could engage with neuropsychiatric biopolitics and question the role of some dementia studies in furthering the stigmatisation of cognitive decline in later life.
