Feasibility and Acceptability of a Multifaceted Observational Protocol to Investigate Lucidity in Advanced Dementia.

IF 1.8 4区 医学 Q3 CLINICAL NEUROLOGY Alzheimer Disease & Associated Disorders Pub Date : 2024-04-01 Epub Date: 2024-04-08 DOI:10.1097/WAD.0000000000000615
Alison Coulson, Clark Benson, Jess Fehland, Kayla Dillon, Kimberly Mueller, Andrea Gilmore-Bykovskyi
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Abstract

Objective: Episodes of lucidity (ELs), characterized by spontaneous, transient recovery of abilities, are reported across neurological conditions, including advanced dementia. Despite the significance of these events, existing research is limited to retrospective reports. Approaches to prospectively capturing and characterizing ELs in dementia are lacking.

Methods: This pilot study determined the feasibility and acceptability of a multifaceted observational protocol to capture, characterize, and validate ELs in individuals with advanced dementia in hospice. Feasibility was measured through enrollment/retention rates, workload/usability assessment of video observation, and data processing procedures to facilitate the measurement of verbal and nonverbal features for EL characterization. The acceptability of observation and informant validation procedures was qualitatively examined with clinician and family caregiver participants.

Results: Study procedures were endorsed as highly acceptable among clinician (N = 49) and caregiver (N = 16) participants, demonstrating higher than anticipated thresholds for observation duration. Enrollment and retention rates for patient participants (N = 6) were 100% and 84%, respectively. Workload and usability measures demonstrated low disruptiveness and high ease of use after training.

Discussion: Longitudinal video observation among individuals with advanced dementia in hospice care for the detection of lucidity was feasible and highly acceptable. Multidimensional, temporal coding of features of ELs is feasible but time-intensive.

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调查晚期痴呆症患者清醒程度的多方面观察方案的可行性和可接受性。
目的:在包括晚期痴呆症在内的各种神经系统疾病中,都有以自发、短暂的能力恢复为特征的清醒发作(ELs)报道。尽管这些事件非常重要,但现有研究仅限于回顾性报告。目前还缺乏前瞻性地捕捉和描述痴呆症患者ELs的方法:这项试点研究确定了一项多方面观察方案的可行性和可接受性,该方案旨在捕捉、描述和验证安宁疗护中晚期痴呆患者的ELs。可行性通过入选率/保留率、视频观察的工作量/可用性评估以及数据处理程序来衡量,以促进对EL特征的言语和非言语特征的测量。临床医生和家庭照顾者对观察和信息验证程序的可接受性进行了定性研究:临床医生(49 人)和护理人员(16 人)对研究程序的认可度很高,观察持续时间的阈值高于预期。患者参与者(6 人)的注册率和保留率分别为 100%和 84%。工作量和可用性测量结果表明,培训后的干扰性低,易用性高:讨论:对接受安宁疗护的晚期痴呆患者进行纵向视频观察以检测其清醒程度是可行的,而且接受度高。对EL的特征进行多维度、时间性编码是可行的,但需要大量时间。
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来源期刊
CiteScore
3.10
自引率
4.80%
发文量
88
期刊介绍: ​Alzheimer Disease & Associated Disorders is a peer-reviewed, multidisciplinary journal directed to an audience of clinicians and researchers, with primary emphasis on Alzheimer disease and associated disorders. The journal publishes original articles emphasizing research in humans including epidemiologic studies, clinical trials and experimental studies, studies of diagnosis and biomarkers, as well as research on the health of persons with dementia and their caregivers. The scientific portion of the journal is augmented by reviews of the current literature, concepts, conjectures, and hypotheses in dementia, brief reports, and letters to the editor.
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