路易体痴呆患者及其照护者的临终体验：一项混合方法分析。
End-of-life experiences in individuals with dementia with Lewy bodies and their caregivers: A mixed-methods analysis.
机构信息
Department of Health Outcomes and Biomedical Informatics, University of Florida College of Medicine, Gainesville, Florida, United States of America.
Department of Neurology, University of Florida College of Medicine, Gainesville, Florida, United States of America.
出版信息
PLoS One. 2024 Aug 29;19(8):e0309530. doi: 10.1371/journal.pone.0309530. eCollection 2024.
BACKGROUND
Dementia with Lewy bodies (DLB) is one of the most common degenerative dementias, but research on end-of-life experiences for people with DLB and their caregivers is limited.
METHOD
Dyads of individuals with moderate-advanced DLB and their primary informal caregivers were recruited from specialty clinics, advocacy organizations, and research registries and followed prospectively every 6 months. The current study examines results of caregiver study visits 3 months after the death of the person with DLB. These visits included the Last Month of Life survey, study-specific questions, and a semi-structured interview querying end-of-life experiences.
RESULTS
Individuals with DLB (n = 50) died 3.24 ± 1.81 years after diagnosis, typically of disease-related complications. Only 44% of caregivers reported a helpful conversation with clinicians regarding what to expect at the end of life in DLB. Symptoms commonly worsening prior to death included: cognition and motor function, ADL dependence, behavioral features, daytime sleepiness, communication, appetite, and weight loss. Almost 90% of participants received hospice care, but 20% used hospice for <1 week. Most caregivers reported overall positive experiences in the last month of life, but this was not universal. Having information about DLB and what to expect, access to support, and hospice care were healthcare factors associated with positive and negative end of life experiences. Hospice experiences were driven by communication, care coordination, quality care, and caregiver education.
CONCLUSION
Most caregivers of individuals who died with DLB reported positive end-of-life experiences. However, the study identified multiple opportunities for improvement relating to clinician counseling of patients/families, support/hospice referrals, and monitoring individuals with DLB to identify approaching end of life. Future research should quantitatively identify changes that herald end of life in DLB and develop tools that can assist clinicians in evaluating disease stage to better inform counseling and timely hospice referrals.
TRIAL REGISTRATION
Trial registration information: NCT04829656.
背景
路易体痴呆（DLB）是最常见的退行性痴呆症之一，但对 DLB 患者及其照顾者临终体验的研究有限。
方法
从中度至重度 DLB 患者及其主要非正规照顾者中招募了二人一组的个体，他们来自专科诊所、宣传组织和研究登记处，并每 6 个月进行一次前瞻性随访。本研究检查了 DLB 患者死亡后 3 个月照顾者研究访问的结果。这些访问包括生命最后一个月的调查、特定于研究的问题以及一个半结构化的访谈，询问临终体验。
结果
DLB 患者（n = 50）在诊断后 3.24 ± 1.81 年死亡，通常死于与疾病相关的并发症。只有 44%的照顾者报告说，他们与临床医生就 DLB 生命末期的预期进行了有益的对话。死亡前常见的症状恶化包括：认知和运动功能、ADL 依赖、行为特征、白天嗜睡、沟通、食欲和体重减轻。近 90%的参与者接受了临终关怀，但 20%的人使用临终关怀的时间<1 周。大多数照顾者报告说，在生命的最后一个月有总体上的积极体验，但并非所有人都如此。有关 DLB 的信息和预期、获得支持以及临终关怀是与积极和消极临终体验相关的医疗保健因素。临终关怀体验是由沟通、护理协调、高质量护理和照顾者教育驱动的。
结论
大多数死于 DLB 的患者的照顾者报告说有积极的临终体验。然而，该研究确定了与患者/家庭的临床医生咨询、支持/临终关怀转介以及监测患有 DLB 的个体以确定接近生命终点相关的多个改进机会。未来的研究应定量确定预示 DLB 生命终点的变化，并开发可以帮助临床医生评估疾病阶段以更好地提供咨询和及时转介临终关怀的工具。
试验注册信息
NCT04829656。
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