de Sola-Smith Karen, Gilissen Joni, van der Steen Jenny T, Mayan Inbal, Van den Block Lieve, Ritchie Christine S, Hunt Lauren J
Department of Geriatrics (K.d.S.), Palliative and Extended Care, Veterans Affairs Medical Center, San Francisco, California, USA; Department of Physiological Nursing (K.d.S., L.J.H.), University of California San Francisco, California, USA.
Global Brain Health Institute (GBHI) (J.G., I.M., C.S.R., L.J.H.), University of California San Francisco, California, USA; Department of Family Medicine and Chronic Care (J.G., L.V.B), Vrije Universiteit Brussel (VUB) and Department of Public Health and Primary Care, End-of-Life Care Research Group, Universiteit Gent, Brussels, Belgium.
J Pain Symptom Manage. 2024 Sep;68(3):e206-e227. doi: 10.1016/j.jpainsymman.2024.05.028. Epub 2024 Jun 6.
Palliative care is recommended for all people with dementia from diagnosis through end-of-life. However, palliative care needs and effective elements of palliative care are not well-defined for the earlier stages of dementia.
To systematically map current research on palliative care early in the disease trajectory of dementia.
Scoping review of scientific literature.
PubMed, CINAHL, EMBASE, Cochrane, PsycINFO, Web of Science.
We included studies published in English over the last decade (through March 2022) that focused on palliative care in early stages of dementia and targeted outcomes in palliative care domains. Two authors independently screened abstracts and full texts and scored the quality of included studies using tools by the Joanna Briggs Institute.
Among the 77 papers reviewed, few addressed early stages of dementia specifically. We found that: 1) While "early" palliative care was not well-defined in the literature, evidence indicated that palliative care needs were present at or before diagnosis and across the trajectory. Notable opportunities for palliative care arise at 'tipping points' (i.e., when symptoms, functional status, or caregiving needs change). 2) Palliative care needs in early dementia include advocacy for goal-aligned care in the future, reassurance against the threat of negligence and abandonment by caregivers, planning for future scenarios of care (practical, individual, and relational needs), and establishing of long-term relationships with providers entrusted for care later in disease. 3) Elements of effective palliative care in early dementia could include dementia-specific ACP and goals of care discussions, navigation for building a network of support, provision of tools and resources for family, tailored care and knowledge of the person, and well-prepared dementia-care providers. The scarcity of palliative care studies aimed at early disease indicates a gap in the evidence in dementia care.
The literature on palliative care in early dementia is sparse. Future studies should focus on assessment tools for optimizing timing of palliative care in early dementia, gaining better understanding of patient and family needs during early phases of disease, and providing training for providers and families in long-term relationships and communication around goals of care and future planning.
建议对所有痴呆症患者从诊断到生命终结全程提供姑息治疗。然而，痴呆症早期阶段的姑息治疗需求及姑息治疗的有效要素尚未明确界定。
系统梳理痴呆症疾病进程早期姑息治疗的现有研究。
对科学文献进行范围综述。
PubMed、CINAHL、EMBASE、Cochrane、PsycINFO、科学引文索引。
我们纳入了过去十年（截至2022年3月）以英文发表的、聚焦痴呆症早期阶段姑息治疗及姑息治疗领域目标结果的研究。两位作者独立筛选摘要和全文，并使用乔安娜·布里格斯研究所的工具对纳入研究的质量进行评分。
在 reviewed的77篇论文中，很少有专门针对痴呆症早期阶段的。我们发现：1）虽然文献中对“早期”姑息治疗没有明确界定，但有证据表明，姑息治疗需求在诊断时或诊断前以及疾病全程均存在。在“转折点”（即症状、功能状态或照护需求发生变化时）出现显著的姑息治疗机会。2）早期痴呆症的姑息治疗需求包括倡导未来目标一致的照护、消除照护者疏忽和遗弃威胁的保证、规划未来照护方案（实际、个人和关系需求）以及与后期委托照护的提供者建立长期关系。3）早期痴呆症有效姑息治疗的要素可能包括特定于痴呆症的预立医疗照护计划（ACP）和照护目标讨论、构建支持网络的指导、为家庭提供工具和资源、个性化照护及对患者的了解，以及准备充分的痴呆症照护提供者。针对疾病早期的姑息治疗研究稀缺，表明痴呆症照护证据存在缺口。
关于早期痴呆症姑息治疗的文献稀少。未来研究应聚焦于优化早期痴呆症姑息治疗时机的评估工具、更好地了解疾病早期患者及家庭需求，以及为提供者和家庭提供关于长期关系及围绕照护目标和未来规划沟通的培训。
