MEDICAL GOALS IN DEMENTIA: ETHICS & QUALITY OF LIFE

痴呆症问题的巨大国际范围与神经科学领域令人兴奋的发现相结合，为阿尔茨海默病及相关疾病的治疗带来了新的希望和紧迫性。无论是外行文献还是学术文献，都很少讨论围绕这些疾病建立治疗目标的实践或概念问题。基于话语伦理原则的新努力已经开始探索痴呆症患者，护理人员和专业人员面临的各种伦理问题和价值冲突。这些方法使我们认识到实际护理情况中所面临的复杂性。国内外正在努力设计治疗方法，以改善认知和行为症状，并减缓疾病的进展。在本提案中，我们将使用多种方法来探索建立痴呆的治疗目标。我们将扩大我们国家认可的工作，以建立由受影响的人、他们的照顾者和卫生保健专业人员组成的焦点小组。这些焦点小组将辅以旨在收集更多护理人员和患者态度数据的调查。在我们最初的焦点小组中，生活质量的改善一直是一个关键概念，但在干预研究中评估生活质量的工作却很少。我们将进一步开发由Meryl Brod和Rebecca Logsdon及其同事设计的两种工具来评估生活质量。我们将研究这些生活质量仪器的表现与其他神经心理学能力之间的关系，包括记忆、语言、执行功能和洞察力。最后，我们将比较在患者和护理人员中建立效用权重的方法，包括时间权衡、标准赌博和评级量表。这些努力背后的综合主题是，需要进一步探索痴呆症的治疗目标，各种技术可能使我们更好地了解受这些疾病影响的家庭的需求和愿望。在拨款计划的最后几年，我们会根据拨款初期累积的知识，发展干预措施，以加强其他护理单位的决策。

The enormous international scope of the problem of dementia combined with exciting discoveries in neurosciences is leading to new hope and urgency in the treatment of Alzheimer's disease and related conditions. Little discussion in either the lay or the academic literature has focused on the practical or conceptual issues surrounding the establishment of therapeutic goals in these disorders. New efforts based in the principal of discourse ethics have begun to explore the kinds of ethical issues and value conflicts faced by patients with dementia, caregivers, and professionals. These approaches have led us to recognize the complexities that are faced in the actual caregiving situation. National and international efforts are underway to design therapies to improve both the cognitive and behavioral symptoms as well as to slow the progression of disease. In this proposal, we will use a variety of methods to explore the establishment of therapeutic goals in dementia. We will expand on our national recognized work to develop focus groups of affected persons, their caregivers, and health care professionals. These focus groups will be complemented by surveys designed to collect data about the attitudes of broader populations of caregivers and patients. In our initial focus groups, improvement of quality of life has consistently emerged as a key concept yet there has been little work done to assess quality of life in intervention studies. We will further develop two instruments designed by Meryl Brod and Rebecca Logsdon and colleagues to assess quality of life. We will examine the relationship between performance on these quality of life instruments and other neuropsychological abilities, including memory, language, executive function and insight. Finally, we will compare methods of establishing utility weights in both patients and caregivers, including time tradeoff, standard gamble and rating scales. The integrating theme behind these efforts is that further exploration of therapeutic goals in dementia is required and that a variety of techniques may allow us to understand better the needs and desires of those families affected by these conditions. In the final years of the proposal we will develop interventions based on the knowledge accumulated during the initial periods of the grant to enhance the decision- making of other caregiving units.