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

照顾者与痴呆症患者沟通的经验和看法

• 批准号: 10261502
• 负责人: JASON H KARLAWISH
• 金额: $ 24.45万
• 依托单位: UNIVERSITY OF PENNSYLVANIA
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-09-15 至 2023-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10261502
• 关键词: Advocate; Affect; Aging; Alzheimer' s Disease; Area; Attitude; Behavior; Behavioral; Belief; Bioethics; Caregiver well-being; Caregivers; Caring; Case Study; Cessation of life; Characteristics; Clinical; Clinical Psychology; Collaborations; Communication; Conflict (Psychology); Consensus; Data; Decision Making; Dementia; Dementia caregivers; Distant; Emotional; Emotions; Ethics; Event; Exhibits; Family; Family member; Feeling; Frequencies; Future; Grief reaction; Health Policy; Healthcare Systems; Intervention; Interview; Lead; Measurement; Measures; Memory; Mind; Morals; Nature; Outcome; Patients; Pennsylvania; Perception; Personal Satisfaction; Persons; Positioning Attribute; Process; Psyche structure; Psychological Theory; Recording of previous events; Reporting; Research; Research Ethics; Research Personnel; Sampling; Science; Scientist; Site; Structure; Time; Universities; Work; comparison group; dementia care; design; emotional experience; epidemiology study; experience; phenomenological models; response; theories

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.

项目概要/摘要： 痴呆症患者的矛盾清醒是一种意想不到的、自发的、 假设患者具有有意义且相关的沟通或联系 由于渐进性，永久丧失连贯、言语或行为互动的能力 痴呆过程。目前，矛盾清醒的现象学及其对 人们对护理人员做出的临床和日常决定知之甚少。本研究寻求，对于 第一次系统地描述了目睹患有自相矛盾的清醒的人的感觉 痴呆症，并发现目睹它如何影响护理人员的临床和日常护理决策。 这个项目的一个中心前提是，见证矛盾的清醒是一种情感上和 临床转化事件。因此，目睹矛盾的清醒可能会导致增加 照顾者的悲伤情绪、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做好准备 临床医生对护理人员关于自相矛盾的清醒的报告做出回应。该研究采用定性 访谈设计以评估患有此类疾病的人的照顾者的态度、情绪和行为 曾或未曾目睹过矛盾清醒的痴呆症患者。面试也是设计好的 研究矛盾清醒的终结和非终结案例的经历。 病例报告中记载的“终末清醒”是一种自相矛盾的现象。 临死前不久出现的清醒状态。矛盾清醒的非终结案例发生在 患有严重痴呆症的人在发作后不久不会死亡。该研究旨在 比较这些不同的护理人员护理痴呆症患者的经验 组。访谈指南将探讨护理人员对矛盾原因的看法 清醒度以及表现出矛盾清醒度的患者的思想以及临床变化 以及因目睹矛盾的清醒而做出的日常护理决定。人们对此知之甚少 痴呆症患者出现矛盾清醒的频率或照顾者如何影响其 表现和测量。因此，本研究将指导未来的设计 矛盾清醒的流行病学研究及其对护理人员和健康的影响的研究 护理系统，并协助临床医生在护理人员报告病情发作后做出反应 矛盾的清醒。该研究将在宾夕法尼亚大学宾夕法尼亚大学记忆中心进行 集中并创作可供科学家、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。