Hospice Care for Community-Dwelling Persons with Dementia

社区痴呆症患者的临终关怀

• 批准号: 10265438
• 负责人: MELISSA Diane ALDRIDGE
• 金额: $ 15.95万
• 依托单位: ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-09-30 至 2025-05-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10265438
• 关键词: Address; Admission activity; Advanced Malignant Neoplasm; Aging; Behavior; Caregiver support; Caring; Cessation of life; Communities; Data; Data Set; Dementia; Diagnosis; Elderly; Elements; Eligibility Determination; Enrollment; Ensure; Enteral Feeding; Family; Family member; Goals; Health; Health and Retirement Study; Healthcare Systems; Home; Hospice Care; Hospital Nursing; Hospitalization; Individual; Intravenous; Knowledge; Life; Life Expectancy; Life Experience; Location; Longitudinal Studies; Malignant Neoplasms; Medical; Medicare; Modeling; Nursing Homes; Outcome; Pain management; Parenteral Nutrition; Patients; Pattern; Persons; Physical Restraint; Policies; Population; Population Study; Prevalence; Primary Health Care; Prognosis; Quality of Care; Reporting; Research; Sampling; Surveys; Time; Work; base; care preference; cohort; dementia care; end of life; end of life care; experience; health care service utilization; health care settings; hospice environment; improved; improved outcome; meetings; pain symptom; patient home care; payment; population based; preference; pressure; psychosocial; socioeconomics; symptom management; trend

RP5 PROJECT SUMMARY The locus of end-of-life care is shifting from hospitals and nursing homes to the community, intensifying pressure to ensure the availability of high-quality end-of-life care at home. The proportion of U.S. decedents dying at home has increased from 22 percent in 2000 to 31 percent in 2017 and for those dying of dementia it has almost doubled in the same period. End-of-life care at home can be extremely challenging, particularly in the context of dementia. Persons with dementia (PWD) residing at home have similar medical acuity to those in nursing homes and experience high pain and symptom burden, difficulty communicating care preferences, behavior challenges, preventable hospitalizations, and frequent transitions across healthcare settings. Hospice is the dominant model of home care for seriously ill individuals at the end of life. Hospices provide a constellation of interdisciplinary care encompassing pain and symptom management, and psychosocial, spiritual and caregiver support with the goal of enabling individuals to remain at home at the end of life. The potential of hospice to improve the end-of-life experience for community-dwelling PWD and their families is enormous. Yet our understanding of the impact of hospice use among those with dementia is almost exclusively based in the nursing home setting. We lack a population-level understanding of the impact of hospice on outcomes relevant to PWD who remain in the community at the end of life. We will address these knowledge gaps using two population-based studies, the National Health and Aging Trends Study and the Health and Retirement Survey that contain rich demographic, socioeconomic, healthcare utilization, and end-of-life care assessments of older adults. These datasets provide an unprecedented opportunity to examine multiple facets of the end-of-life experience of a national sample of community-dwelling PWD and how hospice impacts that experience. Further, the 20-year timespan of these data will enable us to examine access to hospice for community-dwelling PWD over time and the impact of recent hospice policy changes on hospice use. Our aims are: 1) Evaluate the impact of hospice on perceived quality of end-of-life care (unmet needs for pain and symptom management, interactions with care teams, and goal concordant care) for community-dwelling PWD; 2) Evaluate the impact of hospice on end-of-life healthcare utilization (nursing home admission, hospitalization, care transitions, and home death); and 3) Characterize longitudinal patterns of hospice use by community-dwelling PWD and quantify the impact of Medicare policy changes on hospice use rates. Knowledge gained from this proposal will elucidate how hospice impacts outcomes relevant to end-of-life dementia care in the community, identify potential barriers to its use and thus where additional or alternative models of care may be needed, and inform policies to prepare our healthcare system for the rising prevalence of end-of-life dementia care in our communities.

RP5 项目摘要 临终关怀的场所正在从医院和疗养院转向社区，加剧 确保在家中提供高质量临终护理的压力。美国死者比例 在家中死亡的人数从 2000 年的 22% 增加到 2017 年的 31%，而对于死于痴呆症的人来说 同期几乎翻了一番。家庭临终关怀可能极具挑战性，特别是在 痴呆症的背景。居住在家里的痴呆症患者 (PWD) 的医疗敏锐度与其他人相似 在疗养院，经历高疼痛和症状负担，难以沟通护理偏好， 行为挑战、可预防的住院治疗以及跨医疗机构的频繁转变。 临终关怀是重病患者​​临终家庭护理的主要模式。临终关怀中心提供 一系列跨学科护理，包括疼痛和症状管理以及心理社会， 精神和护理人员支持，目标是使个人在生命结束时能够留在家里。这 临终关怀改善社区残疾人及其家人临终体验的潜力 巨大的。然而，我们对临终关怀对痴呆症患者的影响的了解几乎是有限的。 完全基于疗养院环境。我们对人口层面的影响缺乏了解 对临终时仍留在社区的残疾人士的相关结果进行临终关怀。 我们将利用两项基于人口的研究来解决这些知识差距：国家健康和老龄化 趋势研究和健康与退休调查，包含丰富的人口、社会经济、医疗保健 老年人的利用和临终关怀评估。这些数据集提供了前所未有的 有机会检查全国社区住宅样本临终经历的多个方面 残疾人士以及临终关怀如何影响这种体验。此外，这些数据的 20 年时间跨度将使我们能够 检查社区残疾人接受临终关怀服务的情况随时间的变化以及近期临终关怀政策的影响 临终关怀使用的变化。我们的目标是： 1) 评估临终关怀对临终感知质量的影响 护理（未满足的疼痛和症状管理需求、与护理团队的互动以及目标一致 护理）社区居住的残疾人； 2) 评估临终关怀对临终医疗保健利用的影响 （入住疗养院、住院、护理过渡和在家死亡）； 3) 表征纵向 社区居住的残疾人使用临终关怀的模式，并量化医疗保险政策变化对临终关怀的影响 临终关怀中心的使用率。从该提案中获得的知识将阐明临终关怀如何影响相关结果 为了社区的临终痴呆护理，确定其使用的潜在障碍，从而在哪里进行额外或 可能需要替代的护理模式，并为我们的医疗保健系统为不断上升的人口做好准备提供政策依据 我们社区中临终痴呆症护理的普遍性。