Accepted Paper:

'Are we just giving patients more years of anxiety?' Time, futures and expectations and an early diagnosis of Alzheimer's disease  

Author:

Julia Swallow (University of Leeds)

Paper short abstract:

This paper examines how diagnosing Alzheimer’s disease (AD) at earlier stages, affects the construction of a future with AD in the present. Early diagnosis produces uncertainties around patient futures, and for healthcare practitioners when there is a lack of treatment options and cure for the disease.

Paper long abstract:

Efforts to diagnose Alzheimer's disease (AD) in its earliest stages dominates scientific research and healthcare policy in the UK. Focus on early diagnosis has led to the development of biomarker technologies in scientific research, and the development of initiatives including the National Dementia Commissioning for Quality and Innovation (CQUIN) Framework in healthcare policy. The CQUIN aims to increase and therefore govern early diagnosis rates for AD by screening individuals for cognitive decline in the hospital setting. It is anticipated that early diagnosis will maximise treatment options and enable patients to 'prepare for their future' in terms of care. Drawing on qualitative ethnographic data, this paper examines the extent to which the discourse of hope embedded in early diagnosis as governed in initiatives such as the CQUIN, affects the construction of a future with AD in the present. Developing the analytical standpoint of the sociology of expectations (Michael 2000), this paper shows how the kinds of hopeful futures rhetorically enacted by the CQUIN and early diagnosis, downplays the role the CQUIN has in constituting particular expectations about a future with AD. Early diagnosis produces uncertainty for patients as to what the future might bring, and for professionals in terms of treatment options and care. Examining the promissory claims of the CQUIN through an STS lens, casts light on the expectations, anticipations and anxieties the future of an ageing population with AD produces: important for reflecting on how the governance of early diagnosis in healthcare policy might be (re)imagined in the future.

Panel T028
Futures in the making and re-making