Department of Neurology, Johns Hopkins School of Medicine, Baltimore, MD, USA.
Department of Psychiatry and Behavioral Sciences, Johns Hopkins School of Medicine, Baltimore, MD, USA.
Int Psychogeriatr. 2020 May;32(5):585-599. doi: 10.1017/S1041610219000784. Epub 2019 Jul 16.
To examine factors that influence decision-making, preferences, and plans related to advance care planning (ACP) and end-of-life care among persons with dementia and their caregivers, and examine how these may differ by race.
Cross-sectional survey.
13 geographically dispersed Alzheimer's Disease Centers across the United States.
431 racially diverse caregivers of persons with dementia.
Survey on "Care Planning for Individuals with Dementia."
The respondents were knowledgeable about dementia and hospice care, indicated the person with dementia would want comfort care at the end stage of illness, and reported high levels of both legal ACP (e.g., living will; 87%) and informal ACP discussions (79%) for the person with dementia. However, notable racial differences were present. Relative to white persons with dementia, African American persons with dementia were reported to have a lower preference for comfort care (81% vs. 58%) and lower rates of completion of legal ACP (89% vs. 73%). Racial differences in ACP and care preferences were also reflected in geographic differences. Additionally, African American study partners had a lower level of knowledge about dementia and reported a greater influence of religious/spiritual beliefs on the desired types of medical treatments. Notably, all respondents indicated that more information about the stages of dementia and end-of-life health care options would be helpful.
Educational programs may be useful in reducing racial differences in attitudes towards ACP. These programs could focus on the clinical course of dementia and issues related to end-of-life care, including the importance of ACP.
考察影响痴呆症患者及其照护者进行预先医疗指示（ACP）和临终关怀决策、偏好和计划的因素，并探讨这些因素可能因种族而异。
横断面调查。
美国 13 个地理位置分散的阿尔茨海默病中心。
431 名种族多样的痴呆症照护者。
“痴呆症个体照护计划”调查。
受访者对痴呆症和临终关怀有一定了解，表明痴呆症患者在疾病晚期希望接受舒适护理，并且报告了高水平的法律 ACP（例如，生前预嘱；87%）和非正式 ACP 讨论（79%）。然而，存在显著的种族差异。与白人痴呆症患者相比，非裔美国人痴呆症患者表示更倾向于接受舒适护理（81%比 58%），并且完成法律 ACP 的比例较低（89%比 73%）。ACP 和护理偏好的种族差异也反映在地理差异上。此外，非裔美国研究伙伴对痴呆症的了解程度较低，并且报告宗教/精神信仰对所需医疗治疗类型的影响更大。值得注意的是，所有受访者都表示，更多关于痴呆症各个阶段和临终关怀医疗选择的信息将有所帮助。
教育计划可能有助于减少 ACP 态度方面的种族差异。这些计划可以侧重于痴呆症的临床病程和临终关怀相关问题，包括 ACP 的重要性。
