ABSTRACT
Historical introductions to dementia often begin with one of two jumping-off points, either early mentions of dementia-like conditions in ancient texts [1] – [3] or the work of Alois Alzheimer at the beginning of the 20th century. [4] , [5] Each of these approaches does a particular type of work. The former shows that the relationship between mental decline and ageing has long been a human concern. The latter provides some perspective on how dementia came to be formally recognised as a neurological phenomenon, divided into senile (in older people) and presenile (in younger people) varieties. 1 These are themes that I will return to repeatedly throughout the book. Here, however, I want to take a third approach to this history-telling by attributing the sociopolitical beginnings of the thing that most of us consider “dementia” to the 1970s and 1980s. [6] This is central to my critical standpoint for three reasons. First, it indicates the transience of dementia as a continuously changing thing or rather a collection of historically, socially, economically and politically contingent things. 2 Dementia in the post–1970s period overlaps its equivalents in 2000 BC Egypt and 1910 AD Germany, yet it is also distinct, and it is those peculiarities that I focus on. Second, the demarcation of a late 20th-century evolution of dementia places it within a wider social and political history of neuropsychiatric research that helps to understand why and how our versions of dementia occurred (and are still occurring). Third, my interest in dementia’s broad history is a route into a more particular history of social dementia research, which was comparatively a rather niche affair before the late 20th century.
This introductory chapter opens with a brief appraisal of the remarkable expansion of dementia research over recent decades. It focuses on the late 20th- and early 21st-century development of what Patrick Fox has called the “Alzheimer’s movement”. [7] This movement has generated significant increases in dementia research funding, related initiatives and research outputs. Having outlined the growth of dementia research over this time, I argue that this movement has, to date, largely failed to achieve its explicit primary aims. These aims are the development of effective treatments (especially cures), high standards of care and good quality of life for those affected by dementia. This introductory depiction of the dementia research landscape provides the basis for the book’s identification of problems that are generated by mainstream research itself. It highlights how the nature of dementia and dementia research, often naturalised under the rubrics of “disease” and “science”, are intimately bound up with and dictated by political processes. Indeed, I will argue that they are political forms. That is essentially what this book is about – the ways in which dementia studies (which I will argue can be understood as an offshoot of the Alzheimer’s movement) has sometimes appeared naïve, or even complicit, in the political making and remaking of dementia and associated research initiatives. By itself, this is not necessarily problematic, beyond the aforementioned failure of research to achieve its aims, at least so far. However, as will become apparent, the resulting circumstances of dementia and research may too often come at the expense of people affected by dementia. It is here, I will argue, that the relations between dementia studies and the wider political machinations surrounding dementia do become problematic.
Before I begin, I must acknowledge the shortcomings of grand historic narratives. They simplify multifaceted realities into linear character-driven plots. They offer pale reflections of the phenomena they pertain to represent and are perhaps better reflections of the storytellers themselves. With this in mind, a far more authentically multiple and developed historical perspective on dementia studies can be found in an earlier volume in this series entitled A Critical History of Dementia Studies. [8] Nonetheless, some brief reflection is needed to contextualise dementia today, particularly the relations between social science and dementia that are central to this text. I do this because some historical appreciation of the machinations of dementia and associated research are crucial to nurturing a sense of their deeply political nature. Ultimately, if there is one thing that I would like this book to do, it is to unsettle any predilections toward the depoliticisation and naturalisation of dementia and human responses to it.
