与早发性痴呆患者共同生活 - 配偶的体验。

Living with a person with young onset dementia - spousal experience.

机构信息

School of Health and Welfare, Halmstad University, Halmstad, Sweden.

Faculty of Health Science, Kristianstad University, Kristianstad, Sweden.

出版信息

Int J Qual Stud Health Well-being. 2024 Dec;19(1):2330233. doi: 10.1080/17482631.2024.2330233. Epub 2024 Mar 17.

Abstract

PURPOSE

Being of working age while at the same time needing to help a partner with young onset dementia has specific consequences for spouses. Research to date has been sparse concerning this particular group of spouses. The aim of the study was to explore spouses' everyday experiences when living with a person with young onset dementia.

METHOD

The study had a descriptive qualitative design with semi-structured interviews with nine spouses. The interviews were analysed using content analysis.

RESULT

The interviewed spouses experienced emotions that varied from feelings of loneliness, frustration, and worry to peace of mind. They said that they used coping strategies, which included adopting a positive mindset, adapting to inabilities, adopting an avoidant approach, and finding ways to recharge. Spouses also felt that they could use more support, both formal and informal.

CONCLUSION

The spouse of a person with young onset dementia has a range of emotional experiences and has resourceful ways of handling everyday life. Various types of support are offered to spouses, however, they seemed to desire more from health care services.

摘要

目的

处于工作年龄,同时需要帮助患有早发性痴呆症的伴侣,这对配偶有特殊的影响。迄今为止,针对这一特定群体的配偶,相关研究还很有限。本研究旨在探讨与患有早发性痴呆症的人一起生活的配偶的日常体验。

方法

本研究采用描述性定性设计,对 9 名配偶进行了半结构化访谈。使用内容分析法对访谈进行分析。

结果

接受访谈的配偶体验到的情绪从孤独、沮丧和担忧到安心,各不相同。他们表示,自己采用了应对策略,包括保持积极的心态、适应能力下降、采取回避态度以及寻找充电方式。配偶们还表示,他们希望获得更多的支持,包括正式和非正式的支持。

结论

早发性痴呆症患者的配偶会经历一系列的情绪体验,并有应对日常生活的办法。为配偶提供了各种类型的支持,但他们似乎更希望从医疗保健服务中获得更多支持。

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