Relatives' Experiences of Frontal-Variant Frontotemporal Dementia
Relatives' Experiences of Frontal-Variant Frontotemporal Dementia
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DOI：
10.1177/1049732312466294
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发表时间：
2013-02-01
影响因子：
3.2
通讯作者：
Allen, Joanne L.
中科院分区：
文献类型：
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作者：
Oyebode, Jan R.;Bradley, Paul;Allen, Joanne L.
在这篇文章中，我们讨论了额变体额颞叶痴呆（fvFTD）患者的亲属如何经历这种疾病以及它如何影响他们的生活。我们采访了6名参与者，并进行了解释性现象学分析。我们报告了11个反映不同挑战的主题。五个主题与目睹奇异和奇怪的变化有关：食欲和驱动力的改变，计划能力的丧失，导致社交尴尬的抑制能力的丧失，冒险行为和沟通问题。其中四个与管理这些变化有关，两个与对个人及其人际关系的影响有关。亲属必须忍受患有fvFTD的患者的不寻常变化，以及由此在社会环境中带来的耻辱。他们学会为亲人采取果断行动，并努力提高生活质量，使用适合fvFTD的策略。亲属们为失去患有fvFTD的人以及他们之间的相互关系而悲伤，但仍然找到了安慰和希望的源泉。
In this article we address how relatives of people with frontal-variant frontotemporal dementia (fvFTD) experience the illness and how it impacts their lives. We interviewed 6 participants and carried out interpretative phenomenological analysis. We report on 11 themes that reflect distinctive challenges. Five themes relate to witnessing bizarre and strange changes: changed appetites and drives, loss of planning ability, loss of inhibition leading to social embarrassment, risky behavior, and communication problems. Four relate to managing these changes and two to the impact on the person and his or her relationships. Relatives must live with unusual changes in the person with fvFTD and the stigma this carries in social settings. They learn to act assertively for their relatives and put effort into promoting quality of life, using strategies adapted for fvFTD. Relatives grieve the loss of the person with fvFTD and their mutual relationship, but nonetheless find sources of solace and hope.