Division of Geriatrics, Department of Medicine, University of California San Francisco, San Francisco, California, USA.
Philip R. Lee Institute for Health Policy Studies, University of California San Francisco, San Francisco, California, USA.
J Palliat Med. 2020 Aug;23(8):1021-1029. doi: 10.1089/jpm.2019.0250. Epub 2020 Jan 22.
Little is known about the provision of palliative care to people with dementia (PWD). To examine demographic and clinical characteristics of PWD versus nondementia serious illnesses receiving community-based palliative care. Retrospective study of people 65+ receiving an initial consultation from a community-based palliative care practice between September 2014 and February 2018 using registry data entered by clinicians into the Quality Data Collection Tool for Palliative Care. Large not-for-profit organization that provides community-based hospice and palliative care services. Demographics, consult characteristics, advance care planning, and caregiver support. Of 3883 older adults receiving a first palliative care consultation from this organization, 22% (855) had a dementia diagnosis. Compared to those with nondementia serious illnesses, PWD were older with more impaired function; 36% had a prognosis of less than six months. More PWD than those without dementia had a proxy decision maker and documented advance directive. A quarter of PWD were full code before consultation; nearly half changed to some limitation afterward. Symptom characteristics were missing for 67% of PWD due to collection through self-report. Caregivers of PWD were responsible for significantly more activities of daily living than caregivers of people with nondementia serious illnesses. This is the first comparison of a large cohort of people with and without dementia receiving a community-based palliative care consult in the United States. Alternative measures of symptom burden should be used in registries to capture data for PWD. Understanding the unique characteristics of PWD will guide future services for this growing population.
对于痴呆症患者(PWD)的姑息治疗服务,目前知之甚少。本研究旨在比较社区姑息治疗服务中 PWD 与非痴呆严重疾病患者的人口统计学和临床特征。本研究为回顾性研究,纳入了自 2014 年 9 月至 2018 年 2 月期间,一家大型非营利组织中,855 名年龄在 65 岁及以上、首次接受社区姑息治疗咨询的患者。该组织通过临床医生在姑息治疗质量数据收集工具中输入的登记数据进行研究。这些患者均来自于一家提供社区临终关怀和姑息治疗服务的机构。研究内容包括人口统计学、咨询特征、预先护理计划和护理人员支持。在该组织接受首次姑息治疗咨询的 3883 名老年人中,22%(855 人)患有痴呆症。与非痴呆严重疾病患者相比,PWD 年龄更大,功能障碍更严重;36%的患者预计生存期不到 6 个月。与无痴呆症的患者相比,PWD 更多的有代理决策者和记录在案的预立医疗指示。四分之一的 PWD 在咨询前为完全复苏指令;近一半的人在咨询后选择了某种限制治疗。由于通过自我报告收集数据,67%的 PWD 的症状特征缺失。PWD 的护理人员负责的日常生活活动明显多于非痴呆严重疾病患者的护理人员。这是美国首次对接受社区姑息治疗咨询的 PWD 与非痴呆严重疾病患者进行的大规模队列比较。在登记处应使用替代的症状负担衡量标准来为 PWD 收集数据。了解 PWD 的独特特征将为这一不断增长的人群的未来服务提供指导。