Palliative care needs and outcomes for dementia patients

据估计，2010年全球痴呆症患者人数为3560万，预计将增加近一倍 每20年，2030年达到6570万，2050年达到1.154亿。 世界卫生组织已经 宣布痴呆症为公共卫生危机，并呼吁全球国家使痴呆症成为国际社会 公共卫生优先事项。痴呆症是一种绝症，在#年是美国第六大死亡原因。 2014年。人们对患者的日常生活经历和随着时间的推移所遭受的痛苦知之甚少 痴呆症的早期阶段，因为大多数研究都集中在痴呆症后期的患者经历和 通常是针对那些已经被收容的人。然而，痴呆症早期的患者受到了困扰。 伴随着令人痛苦的症状。四分之三的痴呆症患者(PWD)居住在社区(例如， 私人住宅或非养老院住宿护理设施)。积极主动、以患者为中心的姑息疗法 干预措施将使患者和家属更好地做好准备，迎接在 社区。实施早期姑息治疗将有助于持续评估和管理 PWD在疾病轨迹的早期就经历了痛苦的症状，并导致更好的结果 症状管理、生活质量和及时提前护理计划。斯坦福阿尔茨海默病 研究中心(ADRC)成立于2015年，我们已经招募了一个庞大的(且不断增长的)小组 参与者，我们对他们进行纵向跟踪，直到死亡。认识到姑息疗法的主要成分 护理包括症状评估和管理、预先护理计划完成和提供 通过对生命周期结束决策的支持，我们设计、改进并试行了一项干预措施，用于 建议的随机临床试验(RCT)。我们将招募200名斯坦福ADRC参与者并随机 100人接受常规护理(UC)或常规护理加上早期姑息护理干预(EPC)，由 12个月以上的护理。EPC将包括一个由护士领导的姑息咨询，会诊时间为两个小时 打电话，然后每月进行11次30分钟的电话评估，外加通常的护理。区域合作研究的具体目标 是(I)确定EPC是否将导致更低的症状负担、更高的生活质量、更少的资源使用 (例如，入院人数和天数、急诊)和更大的患者积极性；(Ii)使用所有基线 由国家阿尔茨海默氏症协调中心(NACC)建立的标准化评估措施 定期收集我们ADRC参与者的信息，以确定治疗结果的主持人和调解人 以及(Iii)使用混合方法分析研究护士与 并评估提供给患者的信息是否 参与者因患者种族和认知水平的不同而不同。这次RCT提供了一个非常难得的机会 随着时间的推移监测社区居住的ADRC参与者的姑息需求，并具有巨大的潜力 通知我们的姐妹ADRC关于痴呆症患者的姑息需求的未来研究。

The number of people living with dementia worldwide, estimated at 35.6 million in 2010, is set to nearly double every 20 years, reaching 65.7 million in 2030, and 115.4 million in 2050. The World Health Organization has declared dementia a public health crisis and issued a call for global nations to make dementia an international public health priority. Dementia is a terminal disease and was the sixth leading cause of death in the US in 2014. Little is known about the everyday lived experiences and suffering endured over time by patients in the early stages of dementia as most research focuses on patient experiences in the later stages of dementia and often on those who are already institutionalized. However, patients early in the dementia trajectory are beset with distressing symptoms. Three out of four Persons With Dementia (PWD) live in the community (e.g., private residences or non-nursing home residential care facilities). Proactive, patient-centered palliative interventions will better prepare patients and families for the challenges of living with dementia in the community. Implementing early palliative care will facilitate ongoing assessment and management of the distressing symptoms experienced by PWD from very early in the illness trajectory and result in better symptom management, quality of life and timely advance care planning. The Stanford Alzheimer's Disease Research Center (ADRC) was founded in 2015 and we have enrolled a large (and growing) panel of participants whom we follow longitudinally until death. Recognizing that the primary components of palliative care include symptom assessment and management, advance care planning completion and provision of support with end-of-life decision-making, we have designed, refined, and piloted an intervention to be used in the proposed Randomized Clinical Trial (RCT). We will recruit 200 Stanford ADRC participants and randomize 100 each to usual care (UC) or usual care plus an early palliative care intervention (EPC) to be delivered by a nurse over a twelve-month period. The EPC will include one nurse-led palliative consult in a two-hour house call and followed by 11 monthly 30-minute phone assessment plus usual care. The specific aims of the RCT are (i) To determine whether EPC will lead to lower symptom burden, higher quality of life, lesser resource use (e.g. hospital admissions and days, emergency visits) & greater patient activation; (ii) To use all the baseline standardized evaluation measures established by the National Alzheimer's Coordinating Center (NACC) that are routinely collected on our ADRC participants to identify moderators and mediators of treatment outcome and (iii) To use mixed-methods to analyze the audiotapes of the encounters between the research nurse and the patient during the twelve intervention sessions and to assess whether the information that is provided to participants differs by patient ethnicity and cognitive levels. This RCT provides a very rare opportunity to monitor the palliative needs over time of community-dwelling ADRC participants and has great potential to inform future studies by our sister ADRCs on the palliative needs of persons with dementia.