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， 每20年，2030年达到6570万，2050年达到1.154亿。 世界卫生组织 宣布痴呆症是一场公共卫生危机，并呼吁全球各国将痴呆症作为一个国际问题， 公共卫生优先。痴呆症是一种晚期疾病，是年美国第六大死亡原因。 2014.关于在美国的病人的日常生活经历和随着时间的推移所忍受的痛苦，人们知之甚少。 痴呆症的早期阶段，因为大多数研究都集中在痴呆症后期阶段的患者经历上， 通常是那些已经被制度化的人。然而，处于痴呆症早期的患者却受到困扰 出现了令人痛苦的症状四分之三的痴呆症患者（PWD）生活在社区（例如， 私人住宅或非疗养院住宿护理设施）。主动、以患者为中心的姑息治疗 干预措施将使患者和家庭更好地为老年痴呆症患者的生活挑战做好准备。 社区实施早期姑息治疗将有助于持续评估和管理 PWD从疾病轨迹的早期经历的痛苦症状，并导致更好的 症状管理、生活质量和及时的提前护理计划。斯坦福大学老年痴呆症 研究中心（ADRC）成立于2015年，我们已经招募了一个大型（和不断增长的）面板， 我们会纵向跟踪这些参与者直到他们死亡。认识到姑息疗法的主要成分 护理包括症状评估和管理，提前完成护理计划并提供 为了支持生命终结决策，我们设计、完善并试行了一种干预措施， 随机临床试验（RCT）。我们将招募200名斯坦福大学的ADRC参与者， 常规护理（UC）或常规护理加早期姑息治疗干预（EPC）各100例，由 护士在12个月内。EPC将包括一个护士主导的姑息性咨询在两小时的房子 电话，然后是11个月30分钟的电话评估加上日常护理。RCT的具体目标 （i）确定EPC是否会导致更低的症状负担、更高的生活质量、更少的资源使用 (e.g.（二）使用所有的基线， 国家阿尔茨海默氏症协调中心（NACC）制定的标准化评估措施， 对我们的ADRC参与者进行常规收集，以确定治疗结果的调节剂和介导剂 及（iii）使用混合方法分析研究护士与 在12个干预会话期间对患者进行评估，并评估提供给 参与者因患者种族和认知水平而异。本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ADRC参与者的姑息治疗需求，并且具有很大的潜力， 为我们的姐妹ADRC未来关于痴呆症患者姑息治疗需求的研究提供信息。

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.