Cognitive Neurology and Alzheimer's Disease Center, Northwestern University Feinberg School of Medicine, USA.
Dementia (London). 2019 May;18(4):1310-1327. doi: 10.1177/1471301217699675. Epub 2017 Mar 22.
Primary progressive aphasia is a language-based dementia that initially spares other cognitive domains; however, aphasia interferes with many life roles such as work and interpersonal relationships. Psycho-educational programs, such as support groups have been shown to be effective for persons with Alzheimer's dementia; however, little is known regarding their effectiveness for persons with primary progressive aphasia. This paper describes the development of a program that offers support, education and activities for persons with primary progressive aphasia and their care-partners and its feasibility. Development and structure of pilot and formal intervention groups are described. Thematic analysis of both groups included the following themes: (1) coping with limitations and language decline; (2) dealing with increased dependency; (3) expressing resilience and making adaptations; (4) experiencing stigma (pilot group) and confronting stigma (intervention group); (5) experiencing self-confidence; and (6) feeling a sense of belonging. The knowledge gained from this process may be useful in designing programs for individuals with aphasic dementia and preserved insight. Evidence-based data from supportive interventions for persons with primary progressive aphasia and their care-partners are needed.
原发性进行性失语是一种以语言为基础的痴呆症，最初不会影响其他认知领域；然而，失语症会干扰许多生活角色，如工作和人际关系。心理教育计划，如支持小组，已被证明对阿尔茨海默病患者有效；然而，对于原发性进行性失语症患者，人们对此知之甚少。本文介绍了一个为原发性进行性失语症患者及其照顾者提供支持、教育和活动的项目的开发及其可行性。描述了试点和正式干预小组的开发和结构。对两个小组进行的主题分析包括以下主题：（1）应对局限性和语言下降；（2）应对依赖性增加；（3）表达韧性和做出调整；（4）经历污名（试点小组）和面对污名（干预小组）；（5）体验自信；（6）归属感。从这个过程中获得的知识可能对设计有语言障碍和保留洞察力的痴呆症患者的方案有用。需要为原发性进行性失语症患者及其照顾者提供基于支持性干预的循证数据。
