1Department of General Practice & Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, the Netherlands.
Palliat Med. 2014 Mar;28(3):197-209. doi: 10.1177/0269216313493685. Epub 2013 Jul 4.
Dementia is a life-limiting disease without curative treatments. Patients and families may need palliative care specific to dementia.
To define optimal palliative care in dementia.
Five-round Delphi study. Based on literature, a core group of 12 experts from 6 countries drafted a set of core domains with salient recommendations for each domain. We invited 89 experts from 27 countries to evaluate these in a two-round online survey with feedback. Consensus was determined according to predefined criteria. The fourth round involved decisions by the core team, and the fifth involved input from the European Association for Palliative Care.
A total of 64 (72%) experts from 23 countries evaluated a set of 11 domains and 57 recommendations. There was immediate and full consensus on the following eight domains, including the recommendations: person-centred care, communication and shared decision-making; optimal treatment of symptoms and providing comfort (these two identified as central to care and research); setting care goals and advance planning; continuity of care; psychosocial and spiritual support; family care and involvement; education of the health care team; and societal and ethical issues. After revision, full consensus was additionally reached for prognostication and timely recognition of dying. Recommendations on nutrition and dehydration (avoiding overly aggressive, burdensome or futile treatment) and on dementia stages in relation to care goals (applicability of palliative care) achieved moderate consensus.
We have provided the first definition of palliative care in dementia based on evidence and consensus, a framework to provide guidance for clinical practice, policy and research.
痴呆症是一种无法治愈的绝症，没有治疗方法。患者及其家属可能需要针对痴呆症的姑息治疗。
定义痴呆症的最佳姑息治疗。
五轮 Delphi 研究。基于文献，由来自 6 个国家的 12 名专家组成核心小组，为每个领域制定了一组核心领域，并附有相关建议。我们邀请了来自 27 个国家的 89 名专家在两轮在线调查中对这些领域进行评估，并提供反馈。根据既定标准确定共识。第四轮涉及核心团队的决策，第五轮涉及欧洲姑息治疗协会的意见。
共有来自 23 个国家的 64 名（72%）专家评估了 11 个领域和 57 项建议。以下 8 个领域的建议立即获得了完全共识，包括：以患者为中心的护理、沟通和共同决策；最佳治疗症状和提供舒适（这两者被确定为护理和研究的核心）；设定护理目标和提前计划；护理连续性；心理社会和精神支持；家庭护理和参与；医疗团队的教育；以及社会和伦理问题。经过修订，对预后和及时识别临终阶段的建议也达成了完全共识。关于营养和脱水（避免过度激进、负担过重或无效的治疗）以及与护理目标相关的痴呆症阶段（姑息治疗的适用性）的建议获得了中等程度的共识。
我们根据证据和共识为痴呆症姑息治疗提供了第一个定义，为临床实践、政策和研究提供了指导框架。
