Tatzer V C, Reitinger E, Plunger P, Heimerl K
Abteilung für Ergotherapie, Fachhochschule Wiener Neustadt, Johannes Gutenberg Straße 3, 2700, Wiener Neustadt, Österreich.
Institut für Pflegewissenschaft, Universität Wien, Alser Straße 23/12, 1080, Wien, Österreich.
Z Gerontol Geriatr. 2020 May;53(3):245-250. doi: 10.1007/s00391-019-01581-9. Epub 2019 Jul 23.
Family members undertake a large proportion of the care of people living with dementia. The purpose of this study was to explore the needs and caring experiences of family caregivers of people with dementia in Austria, who were organized in a self-help group.
Using an explorative, qualitative research design, data were collected through 1 focus group and 3 in-depth interviews with a total of 10 family caregivers of people with dementia from a self-help group. An inductive qualitative analysis was applied and resulted in four themes: frightening images of dementia in society, continuity and conflicts in the relationship to the person with dementia, caring for one's own health and lack of support and community.
Continuity in the relationship to and joint activities with the person with dementia were positively described but simultaneously the frequently occurring conflicts were described as burdensome. Also described were bureaucratic, structural and financial hurdles for the utilization of support services. The existing support systems offered were mostly judged to be inadequate, inaccessible or unaffordable. The participating caregivers described the communication of the diagnosis of dementia in the environment as a prerequisite for support in the community.
Destigmatization and the further development of dementia-specific support offers and self-help groups for caring relatives and people living with dementia could represent further steps forward. Communicating the dementia diagnosis in the social environment and community seems to be an important but difficult step for caregivers organized in a self-help group.
家庭成员承担了痴呆症患者护理工作的很大一部分。本研究的目的是探讨奥地利痴呆症患者家庭照料者的需求和照料经历，这些照料者来自一个自助组织。
采用探索性定性研究设计，通过1个焦点小组和对来自一个自助组织的10名痴呆症患者家庭照料者进行3次深度访谈来收集数据。采用归纳定性分析方法，得出四个主题：社会中痴呆症的可怕形象、与痴呆症患者关系中的连续性和冲突、照顾自身健康以及缺乏支持和社区。
与痴呆症患者关系中的连续性以及与患者的共同活动得到了积极描述，但同时频繁发生的冲突也被描述为负担沉重。还描述了利用支持服务时遇到的官僚、结构和财务障碍。现有的支持系统大多被认为不足、难以获得或负担不起。参与研究的照料者将在周围环境中传达痴呆症诊断描述为社区获得支持的前提条件。
消除污名化以及进一步发展针对痴呆症患者及其照料亲属的特定支持服务和自助组织可能是进一步的前进方向。在社会环境和社区中传达痴呆症诊断对自助组织中的照料者来说似乎是重要但困难的一步。
