Reimagining the 'Lost' narratives of advanced dementia through literature and critical fabulation.

IF 1.2 3区 社会学 0 HUMANITIES, MULTIDISCIPLINARY
Frederik Schou-Juul, Ieva Stončikaitė, Katharina Fürholzer, Kate Irving
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Abstract

The progression of dementia significantly affects the abilities to communicate needs or experiences, often rendering the inner lives or narratives inaccessible to others. This increases the risk of narratives becoming 'lost' and people living with dementia becoming subject to narrative dispossession. However, even as communicative clarity diminishes, meaningful expressions persist, necessitating empathic and creative approaches to engaging with the narratives of people living with dementia.This paper outlines how the narrative agency of people living with dementia potentially diminishes as the condition progresses, making it increasingly challenging to access their personal narratives. It also explores a range of strategies for sustaining narrative expression, with particular emphasis on empathic narrative engagement-including the use of non-verbal communication, embodied interactions and interpretive practices.Emphasising the importance of engaging with the narratives of advanced dementia, the discussion frames narration as both an act of care and an ethical response to narrative silence. It advocates for imaginative engagement and highlights literature and storytelling as vital tools for understanding dementia. Autobiographical or fictional narratives by or about people with dementia offer profound insights into their experiences, fostering empathy and challenging reductive stereotypes. However, as people living with dementia approach the limits of their own narrative capacity, more speculative approaches become essential in reimagining their narratives to promote their narrative agency.To address this challenge, the paper introduces the concept of critical fabulation-a speculative yet empathic method for reimagining the narratives of advanced dementia-and argues for approaches that reconstruct lost or inaccessible narratives, bridging gaps where direct verbal communication is no longer possible.

通过文学和批判性虚构重新想象晚期痴呆症的“迷失”叙事。
痴呆症的进展严重影响了沟通需求或经历的能力,往往使他人无法了解内心生活或叙述。这增加了叙事“丢失”的风险,也增加了痴呆症患者被剥夺叙事的风险。然而,即使沟通清晰度下降,有意义的表达仍然存在,需要移情和创造性的方法来参与痴呆症患者的叙述。本文概述了痴呆症患者的叙事代理如何随着病情的发展而潜在地减少,这使得获取他们的个人叙事变得越来越具有挑战性。它还探讨了一系列维持叙事表达的策略,特别强调移情叙事参与,包括使用非语言交流,具体化互动和解释实践。讨论强调了参与晚期痴呆症叙事的重要性,将叙事视为一种护理行为和对叙事沉默的道德回应。它倡导富有想象力的参与,并强调文学和讲故事是了解痴呆症的重要工具。痴呆症患者的自传体或虚构故事为了解他们的经历提供了深刻的见解,培养了同理心,挑战了刻板印象。然而,随着痴呆症患者接近自身叙事能力的极限,在重新想象他们的叙事以促进其叙事代理方面,更多的推测方法变得至关重要。为了应对这一挑战,本文引入了批判性虚构的概念——一种重新想象晚期痴呆症叙事的推测性但共情的方法——并提出了重建丢失或难以接近的叙事的方法,弥合了直接语言交流不再可能的差距。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
Medical Humanities
Medical Humanities HUMANITIES, MULTIDISCIPLINARY-
CiteScore
2.60
自引率
8.30%
发文量
59
期刊介绍: Occupational and Environmental Medicine (OEM) is an international peer reviewed journal concerned with areas of current importance in occupational medicine and environmental health issues throughout the world. Original contributions include epidemiological, physiological and psychological studies of occupational and environmental health hazards as well as toxicological studies of materials posing human health risks. A CPD/CME series aims to help visitors in continuing their professional development. A World at Work series describes workplace hazards and protetctive measures in different workplaces worldwide. A correspondence section provides a forum for debate and notification of preliminary findings.
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