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与非流利/语法障碍型原发性进行性失语症共存的经历:改善生活质量的适应和策略。

My experience of living with nonfluent/agrammatic variant primary progressive aphasia: Adaptations and strategies to improve quality of life.

机构信息

Volunteer, Department of Medicine, Division of Gerontology, Geriatrics, and Palliative Care The University of Alabama at Birmingham, USA.

出版信息

Dementia (London). 2021 Apr;20(3):936-951. doi: 10.1177/1471301220918344. Epub 2020 Apr 10.

DOI:10.1177/1471301220918344
PMID:32276559
Abstract

Primary progressive aphasia is a major clinical presentation of frontotemporal lobar degeneration and is a young-onset disorder characterized by deteriorating language skills. There is currently no cure for primary progressive aphasia, nor is it possible to slow the course of the underlying progressive brain degeneration. Hence the chief goal of treatment is palliative. Although the inability to employ language at one's previous level represents a significant functional impairment for those affected, there is a dearth of information about how to make meaningful improvements to the quality of life of people in the early stages of primary progressive aphasia. I have a clinical diagnosis, supported by imaging, of the nonfluent/agrammatic variant of primary progressive aphasia and am under the care of a multidisciplinary medical team. This report is based on my ongoing experience and describes the development and implementation of an evolving set of targeted strategies and adaptations designed to enhance the quality of life of a person in the early stages of this disorder.

摘要

原发性进行性失语是额颞叶变性的主要临床特征,是一种以语言技能逐渐下降为特征的早发型疾病。目前,原发性进行性失语症尚无治愈方法,也无法减缓潜在的进行性大脑退化。因此,治疗的主要目标是缓解症状。尽管对于受影响的人来说,无法以前的水平使用语言是一项重大的功能障碍,但对于如何提高原发性进行性失语症早期患者的生活质量,信息却很少。我被临床诊断为非流利/语法障碍型原发性进行性失语症,且在多学科医疗团队的照顾下。本报告基于我正在进行的经验,描述了一套不断发展的有针对性策略和适应措施的制定和实施,旨在提高该疾病早期患者的生活质量。

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My experience of living with nonfluent/agrammatic variant primary progressive aphasia: Adaptations and strategies to improve quality of life.与非流利/语法障碍型原发性进行性失语症共存的经历:改善生活质量的适应和策略。
Dementia (London). 2021 Apr;20(3):936-951. doi: 10.1177/1471301220918344. Epub 2020 Apr 10.
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