Abstract：
Although one of the most prevalent and impactful features of Huntington\'s disease (HD), little is known about the impact of apathy on HD caregivers, although there is evidence it affects perceptions of distress and burden. Given the importance of the caregivers, we aimed to explore the lived experience of people supporting someone with HD and associated apathy. Semi-structured interviews were conducted with 11 caregivers and analysed using reflective thematic analysis, informed by a phenomenological framework. Five overarching themes were produced: (1) What even is apathy? (2) It makes my life harder: the practical impact of apathy, (3) They haven\'t forgotten me, but they have forgotten that they ever loved me, (4) I\'m grieving for someone who hasn\'t died yet, and (5) I need a safe space to say what I really feel without fear of judgement. Inter-woven between these themes were complex narratives about the unspoken nature of HD, the invisibility of caregivers who felt trapped and unheard, and the one-sided nature of loving someone with the disease. Findings are discussed in relation to theoretical frameworks of anticipatory grief and ambiguous loss, and situated within the wider literature on caregiving for people with a neurodegenerative condition.
摘要：
虽然亨廷顿病（HD）最普遍和最有影响的特征之一，关于冷漠对HD护理人员的影响知之甚少，尽管有证据表明它会影响人们对痛苦和负担的看法。鉴于照顾者的重要性，我们的目标是探索人们支持患有HD和相关冷漠的人的生活体验。对11名护理人员进行了半结构化访谈，并使用反思性专题分析法进行了分析，由现象学框架提供信息。产生了五个总体主题：（1）冷漠是什么？（2）这使我的生活更加艰难：冷漠的实际影响，（3）他们没有忘记我，但是他们忘记了他们曾经爱过我，（4）我为一个还没有死的人感到悲伤，（5）我需要一个安全的空间来说出我的真实感受，而不必担心判断。这些主题之间交织在一起的是关于HD的不言而喻性质的复杂叙述，看护者的隐形感觉被困和闻所未闻，和爱患有这种疾病的人的单方面性质。研究结果与预期悲伤和模棱两可的损失的理论框架进行了讨论，并位于有关神经退行性疾病患者护理的更广泛文献中。
