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

点击翻译按钮获取中文摘要

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.