Characterizing Episodes of Lucidity in Dementia Using Observational and Applied Computational Linguistics Approaches

项目概要/摘要 阿尔茨海默病和相关痴呆（ADRD）患者表现出异质性认知， 疾病进展的功能和行为反应，但这些变化的潜在来源仍然存在 不太了解。特别是沟通能力的波动对护理和 对ADRD患者的态度。特别令人感兴趣的是清醒（EL）事件的发生， 晚期疾病阶段，其特征是自发的，有意义的， 相关的沟通能力，以前被认为是不可挽回的。报道称， 短暂的，最有可能发生在接近寿命结束时，但记录这些事件的经验证据是非常 有限公司努力更好地理解，并最终定义EL，阻碍了欠发达的方法论 捕捉和描述这些事件的方法。虽然在ADRD研究中未得到充分利用，但视听 观察非常适合解决这些差距，因为这些数据提供了客观的数据来源， 对语言和非语言沟通进行了强有力的评估，这是EL的主要手段。 观察我们的长期目标是澄清概念，操作和流行病学的理解EL 在ADRD。我们的短期目标是建立必要的基础数据和基础设施， EL系统研究为了推进这些目标，我们将制定可行和可接受的程序， 能够获取目标人群和时间范围的纵向视听数据，以最大限度地利用机会 用于检测EL;然后将通过计算语言学和序列分析来分析这些丰富的数据源 分析（定时事件）方法，以组装一个强大的，充分表征的语言，非语言的理解， 语言和非语言的沟通特点EL沿着随着这些事件的具体时间质量。 在R21阶段，我们将展示收集和共享纵向视听数据的可行性 通过混合方法的可行性研究，以确定关键的道德和实际的 考虑因素（R21目标1）;并评价口头/非口头编码的可用性、可靠性和捕获率 使用计算语言学和时间事件方法（R21）从收集的视听数据中提取EL指标 目标2）。R33阶段将利用R21阶段优化的程序来扩大数据收集， 开发更可靠的EL频率估计。具体来说，我们将扩大纵向视听 对接近生命末期的ADRD患者进行观察，以获得EL频率的初步估计值，描述事件 属性，并为EL（R33 Aim 1）定义的制定提供信息;并建立纵向 视听观测数据和安全的数据共享平台（R33 Aim 2）。影响：调查结果 研究将为扩展和验证迫切需要的EL客观测量奠定基础， ADRD和提供了一个迫切需要的基础，为未来的系统调查清醒的ADRD。的 本提案的目标直接响应国家ADRD研究优先事项和NIA使命。

PROJECT SUMMARY/ABSTRACT Individuals with Alzheimer’s disease and related dementias (ADRD) demonstrate heterogeneous cognitive, functional, and behavioral responses to disease progression, yet underlying sources of these variations remain poorly understood. Fluctuations in communication abilities in particular have important implications for care and attitudes toward individuals with ADRD. Of particular interest is the occurrence of episodes of lucidity (EL) in advanced disease stages, which are characterized by the manifestation of spontaneous, meaningful, and relevant communication abilities that were previously believed to be irretrievable. Reports suggest EL are transient and most likely to occur near end of life, yet empiric evidence documenting these events is extremely limited. Efforts to better understand, and ultimately define EL, are hindered by underdeveloped methodological approaches for capturing and characterizing these events. While underutilized in ADRD research, audiovisual observation is well-suited to addressing these gaps, as these data provide an objective data source and enable a robust assessment of verbal and nonverbal communication, the primary means through which EL are observed. Our long-term objective is to clarify conceptual, operational and epidemiologic understandings of EL in ADRD. Our short-term objective is to establish the necessary foundational data and infrastructure to accelerate systematic investigation of EL. To advance these goals, we will develop feasible and acceptable procedures to enable capture of longitudinal audiovisual data of targeted populations and timeframes to maximize opportunities for detecting EL; these rich data sources will then be analyzed via computational linguistic and sequential analysis (timed-event) methods, to assemble a robust, fully characterized understanding of the linguistic, non- linguistic, and non-verbal communication features of EL along with the specific temporal qualities of these events. In the R21 Phase, we will demonstrate the feasibility of collecting and sharing longitudinal audiovisual data among PLWD near end of life through a mixed-methods feasibility study to determine key ethical and practical considerations (R21 Aim 1); and evaluate usability, reliability and capture rate for coding of verbal/nonverbal indicators of EL from collected audiovisual data using computational linguistic and timed-event methods (R21 Aim 2). The R33 Phase will harness procedures optimized in the R21 phase to expand data collection and develop more robust estimates of EL frequency. Specifically, we will expand longitudinal audiovisual observations of persons with ADRD near the end of life to obtain initial estimates of EL frequency, describe event attributes, and inform the development of definitions for EL (R33 Aim1); and establish a repository of longitudinal audiovisual observational data and a secure data sharing platform (R33 Aim 2). Impact: Findings from this research will set the stage for extension and validation of urgently needed objective measurement for EL in ADRD and provide a critically needed foundation for future systematic investigation of lucidity in ADRD. The objectives of this proposal are directly responsive to national ADRD research priorities and the NIA mission.