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

项目摘要/摘要： 痴呆症患者自相矛盾的清醒是一段意想不到的，自发的， 有意义的，相关的沟通或联系，患者被认为有 由于进步，永久失去了连贯、口头或行为互动的能力 发疯的过程。当前，悖论清晰度的现象学及其对 照顾者做出的临床和日常决定鲜为人知。这项研究旨在为 第一次，系统地描述在患有自相矛盾的清醒的人身上是什么感觉 并发现目睹痴呆症对照顾者的临床和日常护理决策有何影响。 这个项目的一个中心前提是，见证矛盾的清醒是一种情感和 具有临床变革性的事件。因此，目睹矛盾的清醒可能会导致 照顾者悲痛的感觉，关于适当治疗的家庭冲突，或态度的改变 以及对痴呆症患者的行为。发现这些变化可以更好地做好准备 临床医生对照顾者关于自相矛盾的清醒的报告做出回应。这项研究使用了定性的 面谈设计，评估照顾者的态度、情绪和行为 痴呆症患者有或没有目睹过自相矛盾的清醒。采访也是经过精心设计的 研究终末期与非终末期矛盾清醒的经验。 在案例报告中记录的终端清醒是悖论的一个插曲 死亡前不久出现的清醒状态。矛盾清醒的非终结性病例发生在 患有严重痴呆症的人在发病后不久就不会死亡。这项研究旨在 比较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悖论原因(S)的看法 清醒和关于患者的头脑，表现出矛盾的清醒，以及临床上的变化 以及日常护理决定，因为目睹了矛盾的清醒。人们对此知之甚少 痴呆症患者矛盾清醒的频率或照顾者可能如何影响其 表现和测量。因此，这项研究将指导未来的设计 矛盾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病后做出反应 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学院进行 中心并产生可供科学家、临床医生、 以及老龄化和痴呆症领域的医疗保健政策倡导者。

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.