BACKGROUND Keeping people living with advanced dementia in their usual place of residence is becoming a key governmental goal but to achieve this, family carers and health care professionals must negotiate how to provide optimal care. Previously, we reported a realist analysis of the health care professional perspective. Here, we report on family carer perspectives. We aimed to understand the similarities and differences between the two perspectives, gain insights into how the interdependent roles of family carers and HCPs can be optimised, and make recommendations for policy and practice. METHOD Qualitative study using a realist approach in which we used the criteria from guidance on optimal palliative care in advanced dementia to examine key contexts, mechanisms and outcomes highlighted by family carers. RESULTS The themes and views of family caregivers resonate with those of health care professionals. Their overlapping anxieties related to business-driven care homes, uncertainty of families when making EOL decisions and the importance of symptom management referring to contexts, mechanisms and outcomes, respectively. Contexts specific to family carers were ad hoc information about services, dementia progression and access to funding. Not all family carers identified dementia as terminal, but many recognised the importance of continuity of care and knowing the wishes of the person with dementia. New mechanisms included specific resources for improving EOL care and barriers to discussing and planning for future care. Family carers identified the importance of comfort, being present, the meeting of basic care needs and feeling the right decisions have been made as good outcomes of care. CONCLUSIONS Family carers and health care professionals share similar concerns about the challenges to good EOL dementia care. Better understanding of the effects of dementia at the advanced stages would improve confidence in EOL care and reduce uncertainty in decision making for family carers and health care professionals.

中文翻译：

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晚期痴呆症患者临终关怀的背景，机制和结果：家庭照顾者的观点。

背景技术将患有老年痴呆症的人保持在其通常的住所已成为政府的主要目标，但是要实现这一目标，家庭护理人员和医疗保健专业人员必须协商如何提供最佳护理。以前，我们报告了对医疗保健专业人员观点的现实主义分析。在这里，我们将介绍家庭照顾者的观点。我们旨在了解这两种观点之间的异同，了解如何优化家庭护理人员和HCP的相互依存的角色，并为政策和实践提出建议。方法使用现实主义方法进行定性研究，在该研究中，我们使用了晚期痴呆患者最佳姑息治疗指南中的标准，以研究家庭护理人员强调的关键情况，机制和结果。结果家庭护理人员的主题和观点与卫生保健专业人员的主题和观点共鸣。他们重叠的焦虑与商业驱动的护理院，做出EOL决定时家庭的不确定性以及症状管理对上下文，机制和结果的重要性有关。家庭照顾者的具体情况是有关服务，痴呆症进展和获得资金的临时信息。并非所有家庭护理人员都将痴呆症视为终末期，但许多人认识到持续护理的重要性以及了解痴呆症患者的意愿的重要性。新的机制包括改善EOL护理的特定资源，以及讨论和规划未来护理的障碍。照顾家庭的人意识到舒适存在的重要性，满足基本护理需求并感到正确的决定已成为护理的良好结果。结论家庭护理人员和卫生保健专业人员对良好的EOL痴呆症护理所面临的挑战也有类似的担忧。更好地了解晚期痴呆症的效果将提高人们对EOL护理的信心，并减少家庭护理人员和医疗保健专业人员在决策方面的不确定性。