Critical dementia studies: alliances, resistances and dialogues
Dementia studies has in recent years expanded beyond the pervasive perspectives of medicine to also involve approaches from the social sciences and humanities. This research has to some extent focused rights and citizenship of people with dementia. Still, there is a notable dearth of studies that deals with the social inequalities, discrimination and marginalization facing people with dementia. There is also a lack of dialogues between dementia studies and existing critical fields, e.g. critical disability studies. It is thus both timely and of international relevance to further develop the field of critical dementia studies, which incorporates theories and approaches from existing critical scholarship.
The aim of this project is to author and edit an international edited volume on critical dementia studies, to be published with Routledge in 2022. The volume develops ideas from my own previous research as well as from papers presented as part of the workshops held by the Critical Dementia Network, which was established in 2019 with funding from Riksbankens jubileumsfond. Chapters are authored by a mix of international scholars within different critical fields in the humanities and social sciences, as well as activists/campaigners living with dementia. The volume is a pioneering publication that aims to forge the field of critical dementia studies though interdisciplinary dialogues on social inequalities, marginalization and power.
Final report
The RJ sabbatical resulted in an edited volume (including one single authored and two co-authored chapters) entitled Critical dementia studies: An Introduction available open access. The volume was published by Routledge March 15, 2023 and is the first in a series called Dementia in Critical Dialogue.
The anthology argues for the need for more critical dementia studies and the need to make dementia a political issue, similarly to how age, gender, sexuality and disability have been discussed in other critical scholarship. The volume opens with an introductory chapter where the editors of the volume, Sandberg and Ward, argue for the need for more critical deentia studies, the meaning of critical and criticality and critical dementia studes links to other critical fields, as well as give an overview of the volume. The book is thereafter divided into four different sections, Reclaiming and recasting, Re/framing, Care and control and Forging alliances.
The first part of the volume, Reclaiming and recasting, contains chapters from five people who live with and navigate dementia and cognitive ableism (i.e. disablement associated with cognitive impairment), but who also confront racism, misogyny, homo- and trans-phobia as well as other forms of ableism and health-ism. Chapters involve both the challenges and forms of marginalisations they experience in their everyday lives as well as the ways in which they resist, through organsational work as well as every day resistance.
The second part Re/framing discusses the ‘framings of dementia’, the social constructions in scientific discourse as well as in media and cultural narratives have material consequences for people’s everyday lives. The second section thereby explores how dementia is framed according to existing research agendas, as well as in the cultural imaginary, specifically film. The section also points to the potential for critical reframing.
The third part Care and control discusses the political context of dementia, specifically in terms of care for people with dementia. Several chapters in this part take outset in the Covid-19 pandemic and how this revealed in terms the lives of people with dementia as not ‘grievable’ and worth protecting. The chapters in this part in various ways take contemporary crises as a theme, not only the pandemic but also neoliberal austerity politics. Collectively, they highlight the structural violence and precarity imposed on people with dementia, especially those living in long-term care.
In the final part Forging alliances of this volumethe authors explore the affinities and coalitions between dementia studies and feminist, queer, crip, critical disability and neurodiversity scholarship. A shared feature across the chapters is how other critical movements and theories contribute to problematising a discourse of consensus and assimilation within dementia studies. In contrast to liberal-humanist and citizenship approaches to dementia, which focus on the individual, their rights and responsibilities, the authors in this part underscore the need to turn the gaze towards the normative. This includes for example highlighting the always unstable categories of dementia and ‘ablemindedness’.
The book’s concluding chapter, Thinking back and looking ahead, is less an effort to draw together learning from the preceding chapters to map the co-ordinates to guide a critical methodology for dementia studies.
The anthology argues for the need for more critical dementia studies and the need to make dementia a political issue, similarly to how age, gender, sexuality and disability have been discussed in other critical scholarship. The volume opens with an introductory chapter where the editors of the volume, Sandberg and Ward, argue for the need for more critical deentia studies, the meaning of critical and criticality and critical dementia studes links to other critical fields, as well as give an overview of the volume. The book is thereafter divided into four different sections, Reclaiming and recasting, Re/framing, Care and control and Forging alliances.
The first part of the volume, Reclaiming and recasting, contains chapters from five people who live with and navigate dementia and cognitive ableism (i.e. disablement associated with cognitive impairment), but who also confront racism, misogyny, homo- and trans-phobia as well as other forms of ableism and health-ism. Chapters involve both the challenges and forms of marginalisations they experience in their everyday lives as well as the ways in which they resist, through organsational work as well as every day resistance.
The second part Re/framing discusses the ‘framings of dementia’, the social constructions in scientific discourse as well as in media and cultural narratives have material consequences for people’s everyday lives. The second section thereby explores how dementia is framed according to existing research agendas, as well as in the cultural imaginary, specifically film. The section also points to the potential for critical reframing.
The third part Care and control discusses the political context of dementia, specifically in terms of care for people with dementia. Several chapters in this part take outset in the Covid-19 pandemic and how this revealed in terms the lives of people with dementia as not ‘grievable’ and worth protecting. The chapters in this part in various ways take contemporary crises as a theme, not only the pandemic but also neoliberal austerity politics. Collectively, they highlight the structural violence and precarity imposed on people with dementia, especially those living in long-term care.
In the final part Forging alliances of this volumethe authors explore the affinities and coalitions between dementia studies and feminist, queer, crip, critical disability and neurodiversity scholarship. A shared feature across the chapters is how other critical movements and theories contribute to problematising a discourse of consensus and assimilation within dementia studies. In contrast to liberal-humanist and citizenship approaches to dementia, which focus on the individual, their rights and responsibilities, the authors in this part underscore the need to turn the gaze towards the normative. This includes for example highlighting the always unstable categories of dementia and ‘ablemindedness’.
The book’s concluding chapter, Thinking back and looking ahead, is less an effort to draw together learning from the preceding chapters to map the co-ordinates to guide a critical methodology for dementia studies.