Managing disability and enjoying life: How we reframe dementia through personal narratives
Managing disability and enjoying life: How we reframe dementia through personal narratives
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DOI：
10.1016/j.jaging.2008.01.002
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发表时间：
2009-12-01
影响因子：
2.3
通讯作者：
Moyer, Don
中科院分区：
文献类型：
--
作者：
Beard, Renee L.;Knauss, Jenny;Moyer, Don
将阿尔茨海默氏症称为“永无止境的葬礼”或“自我缓慢解体”的修辞意味着，确诊的患者和他们的家人都是可怕疾病的受害者。从对27名痴呆症患者的网络调查中收集的数据表明，一些患有痴呆症的人如何积极地与他们的日常生活谈判，以反驳这种贬低的假设。扎根的理论方法被用来将文本数据整合到总体主题中。研究发现，痴呆症患者并没有经历与生俱来的“自我丧失”，而是有意识地努力将一种“可管理的残疾”纳入他们现有的身份中。受访者给出了大量的例子，说明他们如何能够并确实与痴呆症共存。这些数据描绘了一种被赋予权力的身份，这表明有必要重新审视痴呆症，以挑战这种生物医学简化论的规范受害者导向和社会弊端。(C)2009 Elsevier Inc.保留所有权利。
Rhetoric referring to Alzheimer's disease as 'the never ending funeral' or 'a slow unraveling of the self' implies that diagnosed individuals and their families alike are victims of a dreaded disease. Data gathered from web-based surveys with twenty-seven individuals with dementia demonstrate how some persons living with the condition actively negotiate their everyday lives to counter such pejorative assumptions. Grounded theory methods were used to consolidate textual data into overarching themes. Findings depict persons with dementia who do not experience an inherent 'loss of self' but rather consciously strive to incorporate a 'manageable disability' into their existing identities. Respondents give numerous examples of how they can and do live with dementia. These data portray an empowered identity that suggests the need for a reframing of dementia to challenge the normative victim-orientation and the social disadvantages of such biomedical reductionism. (C) 2009 Elsevier Inc. All rights reserved.