Advancing Palliative Care for Older Adults Affected by Neurodegenerative Disease: Parkinsons disease, Alzheimers disease and Related Dementias

项目摘要/摘要：神经退行性疾病，如帕金森氏症（PD），路易体痴呆症 (LBD)和阿尔茨海默病（AD）影响近15%的65岁以上的成年人，是导致死亡的主要原因 在美国.虽然这些疾病传统上是由他们的神经症状来定义的，但最近的研究表明， 描述了其他医学症状对患者的高度影响以及巨大的心理社会影响。 这些疾病对患者和家庭的影响。不幸的是，多重证据 证明对患者和护理人员最重要的许多需求（例如疼痛管理， 在目前的护理模式下，预先护理规划、临终护理等问题处理得很差。姑息治疗是一种 对患有限制生命的疾病的个人采取护理办法，解决痛苦的潜在原因，包括 身体症状、心理问题和精神需求。迄今为止， 尽管有证据表明患者和护理人员的需求未得到满足， 可能会服从这种方法。值得注意的是，这位候选人在越来越多的 学术中心现在为神经退行性疾病提供姑息治疗服务， 从一项基于学术的门诊姑息治疗的随机试验中， 该方法改善了患者和护理人员的结果，超过了当前的护理标准。虽然疗效试验 对于推动这一领域的发展至关重要，其传播的障碍包括姑息治疗的劳动力有限 专家、神经科医生缺乏姑息教育、社区缺乏团队资源 设置和患者移动/运输问题。候选人的长期目标是改善结果 并通过新的，有效的， 以及提供姑息治疗的有效模式。该奖项的研究目标将通过以下方式实现：研究 1：确定社区神经科医生个人姑息治疗培训的有效性和可行性 PD/LBD患者和护理人员的基于团队的虚拟家庭呼叫（资助R01）;研究2：开发一个 针对AD患者和护理人员的基于社区的姑息治疗模式（由NIA AD行政资助 补充; R01试验源于结果）;研究3：确定一种新的 支持PD/LBD社区姑息治疗的在线社区模式（R01正在审查）;以及 研究4：将老年医学原则和护理纳入我们的神经姑息治疗模式，以改善 受神经退行性疾病影响的患者和护理人员（未来P01补助金）。因为这是一个新兴的 研究方向的候选人，职业发展目标将提供正式的培训， 学术领导，老年姑息治疗，实施科学，护理人员支持，远程保健和 保健政策。这一建议意义重大，因为它将为姑息治疗奠定基础 与神经退行性疾病和更广泛的老年姑息治疗领域相关的传播工作。

Project Summary/Abstract: Neurodegenerative illnesses such as Parkinson’s (PD), Lewy Body Dementia (LBD) and Alzheimer’s disease (AD) affect nearly 15% of adults over age 65 and are leading causes of death in the US. While these illnesses are traditionally defined by their neurologic symptoms, more recent research describes the high impact of other medical symptoms on patients and the immense psychosocial consequences of these illnesses on both patients and families. Unfortunately, multiple lines of evidence demonstrate that many of the needs most important to patients and caregivers (e.g. pain management, advance care planning, end-of-life care) are poorly addressed under current care models. Palliative care is an approach to caring for individuals with life-limiting illness that addresses potential causes of suffering including physical symptoms, psychosocial issues and spiritual needs. To date there have been limited attempts to apply these principles to neurodegenerative illnesses despite evidence that patients’ and caregivers’ unmet needs may be amenable to this approach. Notably, the candidate has played a central role among a growing cadre of academic centers that now offer palliative care services for neurodegenerative illnesses and presents results from a randomized trial of academic-based outpatient palliative care that convincingly demonstrate this approach improves patient and caregiver outcomes over current standards of care. While efficacy trials are critical to forwarding this field, barriers to their dissemination include a limited workforce of palliative care specialists, lack of palliative education amongst neurologists, lack of team-based resources in community settings, and patient mobility/transportation issues. The long-term goal of the candidate is to improve outcomes and raise standards of care for older adults affected by neurodegenerative illnesses through novel, efficient and effective models of delivering palliative care. The Research Aims of this award will be met through: Study 1: Determine the effectiveness and feasibility of individual palliative care training for community neurologists and team-based virtual house calls for PD/LBD patients and caregivers (funded R01); Study 2: Develop a community-based model of palliative care for AD patients and caregivers (funded NIA AD Administrative Supplement; R01 trial to stem from results); Study 3: Determine the effectiveness and feasibility of a novel online community model to support community-based palliative care for PD/LBD (R01 Under Review); and Study 4: Integrate geriatric principles and care into our neuropalliative care model to improve outcomes for patients and caregivers affected by neurodegenerative illness (future P01 grant). As this is an emerging research direction for the candidate, the Career Development Objectives will provide formal training in academic leadership, geriatric palliative care, implementation science, caregiver support, telehealth and healthcare policy. This proposal is significant because it will create a foundation for palliative care dissemination efforts relevant to neurodegenerative illness and the broader field of geriatric palliative care.