Caregivers' Experiences with and Perspectives on Communication with Persons with Dementia

项目总结/摘要： 痴呆症患者的异常清醒是一种意外的，自发的， 有意义的，相关的沟通或联系，在病人谁被认为是有 由于渐进性的疾病，永久性地失去了连贯、言语或行为互动的能力。 痴呆过程目前，悖论性清醒现象学及其对 对护理人员所做的临床和日常决定了解甚少。本研究旨在为 第一次，系统地描述了什么是喜欢见证自相矛盾的清醒的人， 痴呆症，并发现目睹它如何影响照顾者的临床和日常护理决策。 这个项目的一个中心前提是，目睹自相矛盾的清醒是一种情感上的， 临床变革事件。因此，目睹自相矛盾的清醒可能会增加 照顾者悲伤的感觉，关于适当治疗的家庭冲突，或态度的变化 以及对痴呆症患者的行为。发现这些变化可以更好地准备 临床医生回应照顾者的矛盾清醒的报告。该研究采用定性 访谈设计，以评估患者照顾者的态度、情绪和行为。 有和没有见证过自相矛盾的清醒的痴呆症患者。面试也是为了 研究矛盾性清醒的晚期和非晚期病例的经验。 在病例报告中有记载的终末清醒是一种自相矛盾的发作， 在死亡前不久出现的清醒。反常清醒的非晚期病例发生在 患有严重痴呆症的人，他们不会在发作后不久死亡。本研究旨在 比较这些不同照顾者照顾痴呆症患者的经验 组访谈指南将探讨照顾者对矛盾的原因的信念 关于表现出反常清醒的患者的思想，以及临床上的变化， 和日常护理决策，导致目睹矛盾的清醒。很少有人知道的 痴呆症患者反常清醒的频率或护理人员如何影响其 表现和测量。因此，本研究将指导未来的设计 反常清醒的流行病学研究及其对照顾者和健康影响的研究 护理系统，并协助临床医生在护理人员报告发生 自相矛盾的清醒这项研究将在宾夕法尼亚大学的宾夕法尼亚记忆进行 中心和生产的经验和理论工作，可用于科学家，临床医生， 以及老龄化和痴呆症领域的卫生保健政策倡导者。

Project summary/abstract: Paradoxical lucidity in people with dementia is an episode of unexpected, spontaneous, meaningful, and relevant communication or connectedness in a patient who is assumed to have permanently lost the capacity for coherent, verbal, or behavioral interaction due to a progressive dementing process. At present, the phenomenology of paradoxical lucidity and its impact on the clinical and daily decisions made by caregivers are poorly understood. This study seeks, for the first time, to systematically describe what it is like to witness paradoxical lucidity in people with dementia and to discover how witnessing it affects caregivers' clinical and daily care decisions. A central premise of this project is that witnessing paradoxical lucidity is an emotionally and clinically transformative event. Witnessing paradoxical lucidity might therefore lead to increased feelings of caregiver grief, family conflict about appropriate treatment, or changes in attitudes and behaviors toward the person with dementia. Discovering these changes can better prepare clinicians to respond to caregivers' reports of paradoxical lucidity. The study uses a qualitative interview design to assess the attitudes, emotions, and behaviors of caregivers of people with dementia who have and have not witnessed paradoxical lucidity. The interview is also designed to study the experiences of both terminal and non-terminal cases of paradoxical lucidity. Terminal lucidity, which has been documented in case reports, is an episode of paradoxical lucidity that occurs shortly before death. Non-terminal cases of paradoxical lucidity occur in people with severe dementia who do not die shortly after the episode. The study is designed to compare the experiences of caring for people with dementia among these various caregiver groups. The interview guide will probe caregivers' beliefs about the cause(s) of paradoxical lucidity and about the minds of patients who exhibit paradoxical lucidity, and changes in clinical and daily care decisions resulting from witnessing paradoxical lucidity. Little is known about the frequency of paradoxical lucidity in people with dementia or how caregivers might influence its manifestation and measurement. This study will therefore guide the design of future epidemiological studies of paradoxical lucidity and studies of its impact on caregivers and health care systems, and assist clinicians in responding after caregivers report an episode of paradoxical lucidity. The study will be conducted at University of Pennsylvania's Penn Memory Center and produce empirical and theoretical work that can be used by scientists, clinicians, and health care policy advocates in the area of aging and dementia.