Department of Neurology, National Neuroscience Institute, Singapore.
Department of Psychology, Faculty of Arts and Social Sciences, National University of Singapore, Singapore.
J Am Med Dir Assoc. 2024 Oct;25(10):105219. doi: 10.1016/j.jamda.2024.105219. Epub 2024 Aug 15.
The distinctive differences in clinical needs and disease trajectory between people with young-onset (YOD) and late-onset dementia (LOD) make dementia palliative care unique. Limited studies have reported on the differences in palliative care needs between YOD and LOD, and the optimal time point to introduce palliative care in YOD remains controversial. We performed a systematic review to summarize key issues surrounding palliative care in YOD and highlight unmet needs in this pertinent area.
Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, we searched the PubMed database for all studies published between January 2000 and July 2022 that reported on palliative care in YOD.
Of 32 records identified, 8 articles were eligible for inclusion. The top 3 themes extracted centered around (1) clinical differences between YOD and LOD, (2) symptoms and causes of death in end-stage YOD, and (3) the importance of early advanced care planning (ACP). YOD diagnosis is often delayed and people with YOD have fewer somatic comorbidities but more neuropsychiatric symptoms, longer survival times, and a more malignant disease course. People with YOD and their families face unique psychosocial challenges when symptoms start at a younger age. End-stage YOD is not dissimilar to LOD where patients suffer from a broad spectrum of physical and psychological symptoms requiring palliation. Early initiation of ACP discussion is crucial in YOD given the more rapid progression of disease affecting cognition and decision-making capacity; however, rates of ACP completion in YOD remain low.
Given the complex care needs and more rapid disease trajectory in YOD, palliative care in YOD should be considered from the time of diagnosis, and to be incorporated into routine dementia care.
早发性痴呆（YOD）和晚发性痴呆（LOD）患者的临床需求和疾病轨迹存在明显差异，使痴呆症姑息治疗具有独特性。有限的研究报告了 YOD 和 LOD 患者在姑息治疗需求方面的差异，以及在 YOD 中引入姑息治疗的最佳时间点仍存在争议。我们进行了系统评价，总结了 YOD 姑息治疗的关键问题，并强调了这一相关领域未满足的需求。
根据系统评价和荟萃分析的首选报告项目（PRISMA）指南，我们在 PubMed 数据库中搜索了 2000 年 1 月至 2022 年 7 月期间发表的所有报告 YOD 姑息治疗的研究。
从 32 条记录中，有 8 篇文章符合纳入标准。提取的前 3 个主题集中在（1）YOD 和 LOD 之间的临床差异，（2）终末期 YOD 的症状和死因，以及（3）早期高级护理计划（ACP）的重要性。YOD 的诊断通常较晚，YOD 患者的躯体合并症较少，但神经精神症状较多，生存时间较长，疾病进程更具恶性。当症状在年轻时开始出现时，YOD 患者及其家属面临着独特的心理社会挑战。终末期 YOD 与 LOD 相似，患者患有广泛的身体和心理症状，需要姑息治疗。鉴于疾病的快速进展会影响认知和决策能力，在 YOD 中早期启动 ACP 讨论至关重要；然而，YOD 中 ACP 的完成率仍然较低。
鉴于 YOD 的复杂护理需求和更快速的疾病轨迹，应从诊断时开始考虑 YOD 的姑息治疗，并将其纳入常规痴呆症护理中。
