OBJECTIVES Advance care planning in young-onset dementia largely remains a blind spot within current literature. This study aimed to explore the engagement in and the conceptualization of advance care planning from the perspective of family caregivers of persons with young-onset dementia and to identify potential similarities and differences in this area between American and Belgian persons with young-onset dementia and their family caregivers. DESIGN An exploratory qualitative study. SETTING AND PARTICIPANTS We purposively sampled adult family caregivers of persons with young-onset dementia; our respondents were 13 American and 15 Belgian caregivers with varying familial relationships to the patient. METHODS We conducted 28 semi-structured interviews, using the same interview guide for American and Belgian respondents. Verbatim transcripts were analysed through the method of constant comparative analysis. RESULTS Important similarities between American and Belgian respondents were restricted knowledge of advance care planning, limited communication about advance directives, and their recommendation for professionals to timely initiate advance care planning. Major differences were attention paid to those end-of-life decisions depicted in the legislature of their respective countries, American caregivers placed higher emphasis on financial planning than their Belgian peers, and, in the case of consulting professionals for advance directives, American caregivers turned to lawyers, whereas Belgian caregivers relied on physicians. CONCLUSIONS AND IMPLICATIONS Specific nuances and challenges in terms of advance care planning in young-onset dementia arise from a particular societal and legal context on the one hand, and from patients' and caregivers' younger age on the other. Professionals' awareness of and responsiveness to these specificities could facilitate the advance care planning process. Based on our interpretation of results, several recommendations for practice and policy are made.

中文翻译：

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比较美国与比利时年轻痴呆症的预先护理计划：部分与社会背景相关的挑战

目标 对年轻痴呆症的预先护理计划在很大程度上仍然是当前文献中的一个盲点。本研究旨在从年轻痴呆症患者的家庭照顾者的角度探讨提前护理计划的参与和概念化，并确定美国和比利时年轻痴呆症患者及其在这方面的潜在异同。家庭照顾者。设计 一项探索性的定性研究。设置和参与者 我们有目的地对年轻痴呆症患者的成年家庭照顾者进行抽样；我们的受访者是 13 名美国人和 15 名比利时护理人员，他们与患者的家庭关系各不相同。方法 我们对美国和比利时受访者使用相同的访谈指南进行了 28 次半结构化访谈。通过不断比较分析的方法分析逐字记录。结果 美国和比利时受访者之间的重要相似之处是对预先护理计划的了解有限，关于预先指示的沟通有限，以及他们对专业人员及时启动预先护理计划的建议。主要区别在于各自国家立法机关描述的临终决定，美国护理人员比比利时同行更重视财务规划，并且在咨询专业人士的预先指示的情况下，美国护理人员转向给律师，而比利时的护理人员则依赖医生。结论和意义 一方面是由于特定的社会和法律背景，另一方面是由于患者和护理人员的年龄较小，因此在对早发性痴呆症的预先护理计划方面的具体细微差别和挑战。专业人员对这些特殊性的认识和响应可以促进预先护理计划过程。根据我们对结果的解释，提出了一些实践和政策建议。