Institute for Health & Aging, School of Nursing, University of California, San Francisco, California, USA.
Institute for Health & Aging, School of Nursing, University of California, San Francisco, California, USA.
J Pain Symptom Manage. 2021 Sep;62(3):579-586. doi: 10.1016/j.jpainsymman.2021.01.133. Epub 2021 Feb 5.
Dementia is a terminal diagnosis that requires significant caregiving support across the trajectory of decline through to death. Experiences and perspectives from bereaved caregivers can help identify ways to improve the end-of-life care experience of persons dying with dementia.
This exploratory study sought to assess satisfaction with, and elicit recommendations for improving end-of-life care experiences of decedents with dementia from the perspective of bereaved caregivers.
A cross-sectional survey was conducted with caregivers of decedents with dementia (n = 53), from the San Francisco Bay Area, California. Multiple choice and open-ended questions were asked regarding end-of-life care discussions and decisions and respecting and honoring end-of-life needs and wishes. The Satisfaction with Care at the End of Life in Dementia instrument was adapted for the survey.
While approximately 75% of caregivers were satisfied with their person living with dementia's (PLWD) end-of-life care, 25% felt better care was needed. Qualitative findings revealed that gaps persist regarding communication with providers about disease progression, care continuity and coordination, and honoring death in a preferred location. While most caregivers felt ready to discuss end-of-life decisions with providers when their PLWD was near death, with retrospection, the majority would recommend that providers discuss end-of-life decisions with them during earlier stages of the disease.
End-of-life care for PLWD has significant room for improvement. Efforts to train healthcare providers should focus on helping them meet the complex informational, emotional, and social support needs of PLWD and their caregivers across the trajectory of decline.
痴呆症是一种终末期诊断，在衰退过程中直至死亡都需要大量的护理支持。失去亲人的护理人员的经验和观点可以帮助确定改善痴呆症患者临终关怀体验的方法。
本探索性研究旨在评估丧亲护理人员对痴呆症患者临终关怀体验的满意度，并从他们的角度征求改善临终关怀体验的建议。
对来自加利福尼亚州旧金山湾区的 53 名痴呆症患者的护理人员进行了横断面调查。调查了临终关怀讨论和决策以及尊重和满足临终需求和意愿方面的满意度。对痴呆症患者临终关怀满意度量表进行了改编。
虽然大约 75%的护理人员对其患有痴呆症的亲人（PLWD）的临终关怀感到满意，但 25%的人认为需要更好的护理。定性研究结果表明，在与提供者就疾病进展、护理连续性和协调性以及在首选地点尊重死亡方面仍然存在差距。虽然大多数护理人员在 PLWD 接近死亡时感到准备好与提供者讨论临终决策，但事后看来，他们大多数人会建议提供者在疾病的早期阶段与他们讨论临终决策。
PLWD 的临终关怀有很大的改进空间。培训医疗保健提供者的努力应侧重于帮助他们满足 PLWD 及其护理人员在衰退过程中的复杂信息、情感和社会支持需求。
