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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

基本信息

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
项目类别：
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&apos 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

项目摘要

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.

项目总结/文摘: