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The shadow of dementia: Listening to undecidability in ethnographic interviews with persons suspecting possible dementia
Journal of Aging Studies ( IF 2.707 ) Pub Date : 2023-06-29 , DOI: 10.1016/j.jaging.2023.101156
Shvat Eilat 1
Affiliation  

Even before a diagnosis of dementia, people may negotiate in their everyday lives the fears and suspicions about the possibility of a future with dementia. My field of research involves JewishIsraeli older adult individuals who suspect that they are beginning to lose their memory, but before seeking out a formal diagnosis—and when not seeking a diagnosis at all is an equal possibility. By distinguishing their experience of suspecting possible dementia from this of living with dementia, I attempt to illuminate the social, bio-diagnostic and cultural shadows of dementia hovering in the background of their everyday experience. I begin by shedding light on the ethical and methodological context of my specific field in Israel. I next reflect upon the concept of “shadow,” that is constituted within and reflecting the assemblages of lurking presences accompanying my interlocutors' daily negotiations of the possibility of dementia. I then situate their lived experiences, as well as my ethnographic engagement with them, in the context of the prevailing cultural and social moralities surrounding this possibility. Finally, I show how a negotiation of the place that this shadow occupies in their lives arises in the encounter with the ethnographer. This first account of people before diagnosis and not through the diagnostic event, while keeping the space for deciding about a possible future of diagnosis open, can contribute to the understanding of undecidability as an ethical stance in ethnography, incorporating the suspension of the need to order realities through the imperatives of a diagnosis of dementia. Further, understanding these mundane negotiations with these shadows can help us allow more space for uncertainty and unpredictability as legitimate forms of living with dementia.



中文翻译:

痴呆症的阴影:在对怀疑可能患有痴呆症的人进行人种学采访时聆听不确定性

即使在诊断出痴呆症之前,人们也可能在日常生活中应对对未来可能患有痴呆症的恐惧和怀疑。我的研究领域涉及犹太以色列老年人,他们怀疑自己开始失去记忆,但在寻求正式诊断之前 - 以及根本不寻求诊断也是同样的可能性。通过区分他们怀疑可能患有痴呆症的经历和患有痴呆症的经历,我试图阐明在他们的日常经历背景中盘旋的痴呆症的社会、生物诊断和文化阴影。我首先阐明我在以色列的特定领域的伦理和方法论背景。接下来,我思考“阴影”的概念,它是由潜伏存在的组合构成并反映的,这些存在伴随着我的对话者对痴呆症可能性的日常讨论。然后,我将他们的生活经历以及我与他们的民族志接触置于围绕这种可能性的流行文化和社会道德的背景下。最后,我展示了在与民族志学家的相遇中如何产生对这个阴影在他们生活中占据的位置的协商。这种在诊断之前而不是通过诊断事件对人们进行的首次描述,同时为决定未来可能的诊断保留开放的空间,可以有助于将不可判定性理解为民族志中的伦理立场,包括暂停订购的需要通过痴呆症诊断的必要性来了解现实。此外,了解这些与这些阴影的平凡谈判可以帮助我们为不确定性和不可预测性留出更多空间,作为痴呆症的合法生活形式。

更新日期:2023-07-03
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