Expectant futures and an early diagnosis of Alzheimer's disease: Knowing and its consequences

Abstract

Efforts to diagnose Alzheimer's disease (AD) at earlier stages as a means to managing the risks of an ageing population, dominate scientific research and healthcare policy in the UK. 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 data gathered across an out-patient memory service and in-patient hospital in the UK, the purpose of this paper is to examine the ways in which the hopeful promissory claims of early diagnosis as it maintains the dominant biomedical model for managing AD, are negotiated by healthcare practitioners. Developing the analytical standpoint of the sociology of expectations, this paper demonstrates that early diagnosis has the potential to 'close off' hopeful promissory visions of the future in two ways. Firstly, it (re)produces the fearful anticipations of AD built around expectations concerning the ageing future 'self', and secondly it produces uncertainty in terms of the availability of care as material resource. Whilst practitioners account for the uncertainties and anxieties it produces for patients and their families, they also convey a sense of ambivalence concerning early diagnosis. This article captures the internal conflicts and contradictions inherent to practitioners' perspectives regarding the repercussions of early diagnosis and concludes by arguing that it effaces the uncertainties and anxieties that it produces in practice as it restricts the co-existence of narratives for making sense of memory loss beyond 'loss of self', and fails to recognise care as a viable alternative for managing AD.

The Effects and Meanings of Receiving a Diagnosis of Mild Cognitive Impairment or Alzheimer’s Disease When One Lives Alone

“…“Making sense of nonsense” generated from confusing or partial information from medical providers was identified as a major theme in qualitative studies of persons with MCI [13, 54]. The ambivalence of medical providers on communicating the diagnosis has also been discussed at length [19, 55]. …”

“…Also, future studies should identify gaps in services and how to tailor follow-up services for persons living alone with forgetfulness. These findings are also critical because of increasing number of international studies underlining the paucity of appropriate services to enable those with a diagnosis of AD or other dementias to continue living in the community [15, 19–21, 58]. …”

“…Other investigations emphasized the distress of receiving a diagnosis of AD or other dementias from medical providers often poorly trained in breaking bad news [14–16]. Others underlined a sense of “uncertainty” stemming from receiving a diagnosis of a condition without an effective treatment [17, 18] and the related ambivalence of providers in communicating a diagnosis without an effective treatment [19]. The limited and fragmented services available post-diagnosis increased the distress of patients [15, 20, 21], as well as providers [15, 19].…”

“…Others underlined a sense of “uncertainty” stemming from receiving a diagnosis of a condition without an effective treatment [17, 18] and the related ambivalence of providers in communicating a diagnosis without an effective treatment [19]. The limited and fragmented services available post-diagnosis increased the distress of patients [15, 20, 21], as well as providers [15, 19]. The role of providers’ and patients’ social context in influencing the effects of the diagnosis emerged in a few studies [15, 16, 22].…”

Communicating uncertainties when disclosing diagnostic test results for (Alzheimer's) dementia in the memory clinic: The ABIDE project

“…Examples are tests detecting biomarkers through imaging techniques or in cerebrospinal fluid (CSF) . Earlier diagnostic testing might benefit some patients and their caregivers by reducing uncertainty regarding the cause and the course of the patient's symptoms . However, these tests do not always provide the desired certainty .…”