中晚期路易体痴呆症患者的护理经验和负担。

IF 2.3 Q3 CLINICAL NEUROLOGY
Neurology. Clinical practice Pub Date : 2024-06-01 Epub Date: 2024-04-10 DOI:10.1212/CPJ.0000000000200292
Melissa J Armstrong, Yunfeng Dai, Kaitlin Sovich, Brian LaBarre, Henry L Paulson, Susan M Maixner, Julie A Fields, Angela M Lunde, Leah K Forsberg, Bradley F Boeve, Carol A Manning, James E Galvin, Angela S Taylor, Zhigang Li
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引用次数: 0

摘要

背景和目的:路易体痴呆症(DLB)是一种常见的退行性痴呆症,但缺乏对晚期患者护理经验的研究。本研究旨在调查中晚期路易体痴呆症患者的护理经验,以确定改善护理和支持的机会:方法:研究人员从专科诊所、宣传机构和研究登记处招募了中晚期 DLB 患者及其主要非正式照顾者。研究收集了人口统计学数据、疾病相关测量数据,以及与照顾者支持、负担、悲伤、自我效能、抑郁、生活质量和应对能力相关的照顾者体验测量数据。斯皮尔曼相关系数和Wilcoxon秩和检验评估了护理者测量与患者和护理者变量之间的关系,并对多重检验进行了调整:护理者(n = 143)大多为女性(83.5%)和配偶(84.7%)(平均年龄 68 岁;37-85 岁不等)。近 40% 的照顾者表示负担沉重和/或抑郁。护理人员的测量结果与 DLB 患者的波动和行为症状严重程度、嗜睡和自主神经症状相关。较高的负担与护理者较差的生活质量、较高的抑郁和悲伤相关。自我效能感、社会支持和复原力越强,护理负担越轻。护理者最常担心的问题是无法规划未来、必须将 DLB 患者的需求放在护理者自身需求之前,以及担心 DLB 患者会变得过于依赖护理者,但护理者也表示了许多其他的担忧。照护者普遍对医疗团队的支持表示满意。满意度最低的是有关疾病进展的信息以及医疗团队之间共享信息的程度:讨论:在中晚期 DLB 患者中,与患者和护理者相关的各种因素都会影响护理者的体验。临床医生可以通过提供支持资源和 DLB 教育以及治疗患者的烦扰症状来满足照护者的需求。未来的研究应调查哪些干预措施可以改变和改善晚期DLB患者的护理体验,并确定目前尚无适当治疗方法的患者症状(如波动、白天嗜睡)的治疗方法:试验注册信息:NCT04829656。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Caregiver Experiences and Burden in Moderate-Advanced Dementia With Lewy Bodies.

Background and objectives: Dementia with Lewy bodies (DLB) is a common degenerative dementia, but research on caregiver experiences in late stages is lacking. This study aimed to investigate the caregiving experience in moderate-advanced DLB to identify opportunities for improving care and support.

Methods: Dyads of individuals with moderate-advanced DLB and their primary informal caregivers were recruited from specialty clinics, advocacy organizations, and research registries. The study collected demographics, disease-related measures, and measures of the caregiver experience relating to caregiver support, burden, grief, self-efficacy, depression, quality of life, and coping. Spearman correlation coefficients and Wilcoxon rank-sum tests evaluated the relationships of caregiver measures with patient and caregiver variables with adjustments for multiple testing.

Results: Caregivers (n = 143) were mostly women (83.5%) and spouses (84.7%) (mean age 68 years; range 37-85). Almost 40% reported high burden and/or depression. Caregiver measures correlated with fluctuation and behavioral symptom severity, sleepiness, and autonomic symptoms of the person with DLB. Higher burden correlated with worse caregiver quality of life, higher depression, and grief. Greater self-efficacy, social support, and resilience correlated with lower caregiver burden. The most frequently reported caregiver concerns were being unable to plan for the future, having to put the needs of the person with DLB ahead of the caregiver's own needs, and worry that the person with DLB would become too dependent on the caregiver, but many additional concerns were endorsed. Caregivers were generally satisfied with medical team support. The lowest reported satisfaction related to information regarding disease progression and how well medical teams shared information with each other.

Discussion: Various patient-related and caregiver-related factors influence caregiver experiences in moderate-advanced DLB. Clinicians can target caregiver needs by providing support resources and DLB education and treating bothersome patient symptoms. Future research should investigate what interventions can modify and improve caregiver experiences in advanced DLB and identify therapeutics for patient symptoms currently without adequate treatments (e.g., fluctuations, daytime sleepiness).

Trial registration information: NCT04829656.

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来源期刊
Neurology. Clinical practice
Neurology. Clinical practice CLINICAL NEUROLOGY-
CiteScore
4.00
自引率
0.00%
发文量
77
期刊介绍: Neurology® Genetics is an online open access journal publishing peer-reviewed reports in the field of neurogenetics. The journal publishes original articles in all areas of neurogenetics including rare and common genetic variations, genotype-phenotype correlations, outlier phenotypes as a result of mutations in known disease genes, and genetic variations with a putative link to diseases. Articles include studies reporting on genetic disease risk, pharmacogenomics, and results of gene-based clinical trials (viral, ASO, etc.). Genetically engineered model systems are not a primary focus of Neurology® Genetics, but studies using model systems for treatment trials, including well-powered studies reporting negative results, are welcome.
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