Apathy, defined as a lack of motivation, is a prevalent and persistent behavioural and psychological symptom of dementia. Limited research suggests that apathy is associated with increased carer burden, but there are no studies investigating carers’ subjective experiences of apathy. This study aimed to fill this gap and explore the lived experience of apathy in dementia from the perspectives of the people with dementia and their carers. This article reports on the carers’ perspectives. Six dyads of people with dementia and carers participated in semi-structured interviews, which were analysed using interpretative phenomenological analysis. Three superordinate themes were identified: (1) achieving a balance of conflicting emotions—the challenges of apathy led to feelings of guilt, acceptance, and frustration; (2) new roles imposed by caring, which involved taking on new responsibilities and promoting remaining interests of person with dementia; and (3) having a life of one’s own—coping with apathy by talking to others, and spending time away from the caring role. This study highlighted that carers are caught in a struggle between wanting to involve the person with dementia in decisions and finding that they cannot if they want to overcome the hurdle of apathy. Implications of this study suggest that a wider understanding of apathy at a societal level could lead to the provision of a helpful forum for carers to share their experiences.

中文翻译：

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“他只是不想离开椅子去做这件事”：痴呆症患者的冷漠对其照顾者的影响

冷漠，定义为缺乏动力，是痴呆症的普遍且持续的行为和心理症状。有限的研究表明冷漠与照顾者负担增加有关，但没有研究调查照顾者对冷漠的主观体验。本研究旨在填补这一空白，并从痴呆症患者及其照顾者的角度探讨痴呆症患者冷漠的生活经历。本文报道了照顾者的观点。六对痴呆症患者和照顾者参加了半结构化访谈，并使用解释性现象学分析进行了分析。确定了三个高级主题：（1）在相互冲突的情绪中取得平衡——冷漠的挑战导致内疚、接受和沮丧的感觉；(2) 关怀赋予的新角色，这涉及承担新的责任并促进痴呆症患者的剩余利益；(3) 拥有自己的生活——通过与他人交谈来应对冷漠，并花时间远离照顾角色。这项研究强调，护理人员陷入了让痴呆症患者参与决策和发现如果他们想克服冷漠的障碍就不能这样做之间的斗争。这项研究的意义表明，在社会层面更广泛地了解冷漠可能会为照顾者提供一个有用的论坛来分享他们的经验。这项研究强调，护理人员陷入了让痴呆症患者参与决策和发现如果他们想克服冷漠的障碍就不能这样做之间的斗争。这项研究的意义表明，在社会层面更广泛地了解冷漠可能会为照顾者提供一个有用的论坛来分享他们的经验。这项研究强调，护理人员陷入了让痴呆症患者参与决策和发现如果他们想克服冷漠的障碍就不能这样做之间的斗争。这项研究的意义表明，在社会层面更广泛地了解冷漠可能会为照顾者提供一个有用的论坛来分享他们的经验。