Collaborations, Connections & Participation: An ethnographic study of dementia research in the UK

Abstract

This thesis examines the question: How is biomedical research in the field of dementia enacted? I address this question using ethnographic fieldwork, interviews and document analysis conducted between September 2010 and March 2014, which examine the relations involved in the emergence of a national dementia research agenda in the UK. Over the last decade in the UK ‘dementia’ has become characterised as the public health crisis of our time. The sense of crisis around the conditions covered by this umbrella term is exacerbated by a global trend toward increased longevity and acute awareness of the limitations of existing treatments. In 2011 the UK Department of Health, in collaboration with national research organisations, announced the launch of an integrated dementia research strategy. Taking a historical and emergent perspective on research into aging, neurodegenerative diseases and the concept of ‘dementia’, this examination demonstrates how the evolving research initiative marks a shift in the process of co-production which exists between science, policy and publics in the UK.
Using a detailed examination of linguistic and visual material from the perspective of science policy and practice, the thesis demonstrates how shifts in biotechnology make conditions described under the umbrella of ‘dementias’ differently visible. The scientific narratives which accompany this changing visibility, present dementias as a challenging target for social and scientific intervention. In response to this complexity, the research agenda focuses on the relationships and interactions between the multiple stakeholders involved. A rhetoric-based analysis demonstrates how researchers use such collaborations to try and remake the connections between aging, dementia, science and social responsibility. I argue that this process of breaking and remaking such connections is part of persuasive attempt to embed patients, participants and publics in the conduct of clinical research.
This ethnographic description demonstrates how this process of embedded engagement is not without challenge. Researchers feel increasingly exposed to public expectations and frustrations which exist beyond the control of the ‘citadel’ of science (Martin 1998). Thus through cyclical re-workings of narratives of success and failure, hope and possibility, researchers involved in the development of new interventions for dementia diagnosis and treatment attempt to balance the tension between the rhetoric of future potential products and their day-to-day experience of the scientific process. Thus the thesis demonstrates how the development of new interventions is a continual negotiation of uncertainties and anxieties for both researchers and their participants. The thesis contributes to a growing literature on the complexity of biomedical research and knowledge making.