ABSTRACT
In this chapter, I outline and contextualise dementia studies as a social scientific, humanities and arts sub-tradition in relation to the broader development of dementia research over the past several decades. Throughout the chapter, I show that major traditions of dementia studies have repeatedly positioned themselves in opposition to (bio)medicalisation and adopted humanist stances that have largely overlooked matters of ageing, disease and cognition, often by taking them for granted. I begin by outlining the historic development of neurocognitive approaches to dementia. I argue that while many introductory histories of dementia begin with Alzheimer, the contemporary version of dementia that is most familiar to us, and the associated AD movement, can be best understood as a post-1970s development, albeit with conceptual roots that extend back to the early 19th century. I chart the progression of this dementia from powerful molecular and epidemiological critiques of “senile dementia” in the 1970s to contemporary efforts to delineate typologies of dementias, such as the recent announcement of the LATE subtype. Throughout, issues of ageing and time, biogenic cognitive disease, population typification and interprofessional contests have defined what we too often simplify as “the science”.
In the second half of the chapter, I position dementia studies in response to these developments. In particular, I highlight the centrality of anti-(bio)medicalisation arguments to the foundational work of scholars such as Kitwood, Bond and Lyman in the late 1980s. I argue that the turn to anti-(bio)medicalisation critiques fostered an emphasis on addressing the purported dehumanising qualities of a (bio)medical model. As new areas of dementia studies have emerged, the tendency has persisted for anti-(bio)medicalisation perspectives to focus our attention on dehumanisation. To a considerable extent, an alertness to dehumanisation has provided a useful intellectual footing for cultivating dementia studies. However, there are intertwined dangers here. First, by leaning into humanism (or contestations thereof) as the legitimate terrain of social science and the humanities, dementia studies has potentially drifted away from a robust relationship with neurocognitive research. Second, anti-(bio)medicalisation scholarships were originally appropriated from modernist social theory and have been developed by dementia studies as a means of interrogating social phenomena that may be more post-structural in nature.
In sum, this chapter demonstrates how early iterations of anti-(bio)medicalisation critique in dementia studies embedded humanist predilections across influential sub-traditions. The issue of humanism remains poignant today, manifest in relational notions of citizenship, flourishing human rights activism and emerging posthumanist critiques. As dementia studies scholarships have developed in relation to the (bio)medical model and its supposedly dehumanising effects, many of the aforementioned occurrences in neurocognitive research have received comparably little attention. This is a shame because issues such as normative lifecourse timings and interprofessional conflicts are fundamentally social scientific issues. Dementia studies, though having diverged from neurocognitive research, could be ideally placed to speak to such developments if only it pursued closer engagement. The story of how different intellectual traditions study dementia provides an informative background for the rest of this book. It reveals how, despite having emerged from the same late-20th-century occurrences described in the previous chapter, different areas of dementia research have travelled markedly different routes. In response, much of this book will be dedicated to reuniting those travellers.
