[Emotions of family caregivers of individuals with young-onset dementia when seeking support in the early stages after diagnosis].

Yumi Tomura, Michiyo Hirano
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引用次数: 0

Abstract

Objectives Family caregivers of individuals with young-onset dementia (YOD) often struggle to seek help, despite the heavy burden of care. This study explored their feelings when attempting to find support in the early stages after diagnosis.Methods This qualitative descriptive study conducted semi-structured interviews with eight family caregivers of patients with YOD at home. The analysis extracted and coded passages related to feelings in situations in which family caregivers sought support. By comparing and examining the meanings of the codes, we identified broader themes and developed categories iteratively.Results In the early stages after diagnosis, family caregivers were concerned about "fear and anxiety about developing dementia at a young age," "desire for any information about YOD," "desire to continue currently as long as possible for the future," "desire to protect the dignity of the individual with YOD as a member of society," "hesitation to tell others that he/she has YOD," and "desire to protect their life, mind, and body, which is still in the mid-life." These concerns prompted them to seek the support of others.Conclusion Family caregivers demonstrated earnest wishes for patients with YOD and themselves in the early stages after diagnosis. They dealt with unique YOD-related struggles, including prejudice, the impact on others, and personal hesitations. Seeking support helped alleviate negative feelings arising from the diagnosis process. Family support services should prioritize early outreach at diagnosis, proactively identify difficulties, and tailor them to patients and caregivers. The attitude of the support staff, who anticipate daily life challenges and approach the family, can significantly facilitate support-seeking by caregivers.

[早发性痴呆患者的家庭照顾者在诊断后早期寻求支持时的情绪]。
目的:年轻发病痴呆(YOD)患者的家庭照顾者尽管负担沉重,但往往难以寻求帮助。这项研究探讨了他们在诊断后的早期阶段寻求支持时的感受。方法采用半结构化访谈法,对8名在家照顾YOD患者的家庭护理人员进行定性描述性研究。该分析提取并编码了与家庭照顾者寻求支持的情况下的感受相关的段落。通过比较和检查代码的含义,我们确定了更广泛的主题并迭代地开发了类别。结果在诊断后的早期阶段,家庭照顾者关注的是“对年轻时患痴呆症的恐惧和焦虑”,“渴望获得有关YOD的任何信息”,“希望在未来尽可能长时间地继续”,“希望保护YOD患者作为社会成员的尊严”,“不愿告诉别人他/她患有YOD”,以及“希望保护他们的生命,思想和身体,这仍然是在中年。”这些担忧促使他们寻求他人的支持。结论家庭照护者在诊断后早期表现出对YOD患者及自身的关怀。他们处理独特的yod相关的斗争,包括偏见,对他人的影响,以及个人犹豫。寻求支持有助于缓解诊断过程中产生的负面情绪。家庭支持服务应优先考虑诊断早期外展,主动识别困难,并为患者和护理人员量身定制。支持人员的态度,他们预见到日常生活的挑战并接近家庭,可以显著地促进照顾者寻求支持。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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