Changes in awareness of condition in people with mild-to-moderate dementia: Longitudinal findings from the IDEAL cohort.

Changes in awareness of condition in people with mild-to-moderate dementia: Longitudinal findings from the IDEAL cohort.
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DOI:
10.1002/gps.5702
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发表时间:
2022-04
影响因子:
4
通讯作者:
Clare, Linda
Clare, Linda
中科院分区:
医学2区
文献类型:
--
作者:
Alexander, Catherine M.;Martyr, Anthony;Clare, Linda

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人们对痴呆症患者所表现出的困难的认识是不同的,但很少有研究探索意识随着时间的推移而发生的变化。研究这一点可以进一步了解周围的概念和意识受损的原因。认识到新出现的或正在减弱的意识可以促进关于诊断和适当的诊断后支持的讨论。使用来自改善痴呆症体验和增强积极生活(IDEAL)队列的纵向数据,在两年多的时间里,在三个时间点评估了社区居住的轻中度痴呆症患者的意识。一份有效的清单被用来评估对与痴呆症相关的困难的认识。我们检查了基线水平上意识较低的人的意识变化,并使用病例匹配来描述获得意识的人和继续意识较低的人之间的特征差异。在基线时,917名样本中有83人表现出较低的知晓率。大多数留在研究中的人在后来的时间点上已经意识到了,有些人甚至在确诊后四年或更长时间才意识到这一点。病例匹配比较显示出几个明显的特征:稳定的低意识病例与那些在12个月和24个月时获得并保持意识的病例相比,认知和功能能力相似或更好,但可能有更多的共病。在轻度至中度痴呆症患者中,自我报告的困难意识可以改变,并可能随着时间的推移而增加。持续的低意识可能有个人原因,不能用认知能力或功能能力来解释。这挑战了这样一种观点,即单一的低意识记录代表着与疾病相关的固定症状,并突显了意识的复杂性、个体性和动态性。对病情的认识在轻中度痴呆症患者中有所不同。对病情的认识可能会随着时间的推移而改变,有些人对困难的认识会延迟。疾病阶段以外的个体因素可能会影响人们对痴呆症困难的认识。
Awareness of difficulties shown by people with dementia is known to vary, but few studies have explored changes in awareness over time. Investigating this could further the understanding of surrounding concepts and reasons for impaired awareness. Recognising emerging or diminishing awareness could facilitate discussions about diagnosis and appropriate post‐diagnostic support. Using longitudinal data from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort, awareness in community‐dwelling people with mild‐to‐moderate dementia was assessed at three timepoints over 2 years. A validated checklist was used to evaluate awareness of difficulties associated with dementia. We examined changes in awareness for people with low awareness at baseline, and used case‐matching to describe differences in characteristics between people who gained awareness, and those who continued with low awareness. At baseline, 83 people from a sample of 917 showed low awareness. The majority of those remaining in the study at later timepoints had gained awareness, some as late as four or more years after diagnosis. Case‐matched comparisons revealed few distinguishing characteristics: cases with stable low awareness had similar or better cognitive and functional ability than those who gained and retained awareness at 12 and 24 months, but may have had more co‐morbidities. Self‐reported awareness of difficulties can change and may increase over time in people with mild‐to‐moderate dementia. There may be individual reasons for ongoing low awareness, not explained by cognitive or functional ability. This challenges the view that a single record of low awareness represents a fixed disease‐related symptom, and highlights the complex, individual and dynamic nature of awareness. Awareness of condition varies in people with mild‐to‐moderate dementia. Awareness of condition can change over time, with delayed acknowledgement of difficulties in some people. Individual factors beyond the stage of disease may influence awareness of difficulties in dementia.
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