A Socio-History and Genealogy of Dementia Thought and Conceptualisation in Western Society

Background: Debates concerning the conceptualisation of dementia in Western society, including its framing as a specific type of disorder (such as neuro-psychiatric, part of the natural aging process, cognitive, and so on) are important in understanding how it has come to be problematized. The manner by which this has been framed has implications not only for the perceived disciplinary ownership of dementia, but also for the lived experience of people diagnosed with dementia, their families, and the care professionals and nurse educators supporting them or their carers. The work of Michel Foucault is useful in setting this debate within a critical socio-historical context. Aims: The problematization and conceptualisation of dementia in Western society, including its socio-history, is re-examined, drawing on an approach influenced by Foucault’s history of problematization. Here, through exploring alternative conceptualisations, using a Foucauldian critical history, this study reviews society’s understanding of what it is to be a person with dementia. The aim of this study then is to challenge dominant neuro-psychiatric conceptualisations of dementia in Western society and to examine and explore how alternative conceptualisations have existed through our history. This requires taking a critical review of the historical evidence of the different ways of seeing, speaking about, or understanding dementia and its subsequent problematization. Methods: An in-depth analysis of 500 documents, spanning 4,000 years, covering early Egyptian, Greek and Roman periods, through to the twenty-first century, are examined. These were sourced through academic databases and archival sources as well as snowball sampling from reference lists and bibliographies. Based on carefully considered inclusion and exclusion criteria, including personal reflexivity and consideration for researcher bias, relevant documents were compiled into an Archive representing a socio-history of dementia thought. Framework analysis was then used to examine the manner in which dementia is conceptualised and problematized in different texts or fields of discourse taken from the Archive, and emerging analytical themes were then interpreted using Foucauldian analysis. Results: Six differing conceptualisations or problematizations of dementia were found (as a natural consequence of ageing, a mental or neuro-psychiatric disorder, a bio-medical disorder, a neuro-cognitive disorder, a disability; and, a terminal illness). Conclusion: What it is to be a person with dementia is located within a particular conceptual framework, with ideas or considered truths about the condition reliant upon historically-contingent assumptions. It is here, through understanding the inter-connectedness, dominance, and the subjugation of dementia discourse, we are able to understand a range of possibilities in how we ‘make up people’ (classifications based on social determinants) with dementia. Through this critically reflective position, taken-for-granted assumptions about dementia are called into question