Hospice Care for Community-Dwelling Persons with Dementia

社区痴呆症患者的临终关怀

• 批准号: 10689081
• 负责人: MELISSA Diane ALDRIDGE
• 金额: $ 16.91万
• 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/10689081
• 关键词: Address; Admission activity; Advanced Malignant Neoplasm; Aging; Behavior; Caregiver support; Caring; Cessation of life; Communication; Communities; Community Healthcare; 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; Hospitalization; Hospitals; Individual; Intravenous; Knowledge; Life; Life Expectancy; Life Experience; Location; Longitudinal Studies; Malignant Neoplasms; Medical; Medicare; Modeling; Nursing Homes; Outcome; Pain; Pain management; Parenteral Nutrition; Patients; Pattern; Persons; Physical Restraint; Policies; Population; Population Study; Prevalence; Primary Care; Prognosis; Quality of Care; Reporting; Research; Sampling; Spirituality; Surveys; Symptoms; Time; Work; 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; 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.

RP 5项目总结 临终关怀的中心正在从医院和疗养院转移到社区， 确保在家中提供高质量的临终关怀的压力。美国死者的比例 在家中死亡的人数从2000年的22%增加到2017年的31%，对于那些死于痴呆症的人来说， 在同一时期几乎翻了一番。在家中进行临终关怀可能极具挑战性，特别是在 痴呆症的背景。在家中居住的痴呆症患者的医疗敏锐度与 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，以及医疗机构之间的频繁转换。 临终关怀是重症患者临终时家庭护理的主要模式。收容所提供 一系列跨学科护理，包括疼痛和症状管理，以及心理社会， 精神和照顾者支持，目标是使个人在生命结束时留在家中。的 临终关怀改善社区居住的残疾人及其家人临终体验的潜力是 巨大的。然而，我们对老年痴呆症患者使用临终关怀的影响的理解几乎是 专门在疗养院工作我们缺乏对人口水平的理解， 临终关怀对那些在生命结束时仍留在社区的残疾人的影响。 我们将通过两项基于人口的研究来解决这些知识差距，即国家健康和老龄化研究。 趋势研究和健康与退休调查，包含丰富的人口统计，社会经济，医疗保健 利用率和老年人的临终关怀评估。这些数据集提供了前所未有的 有机会审查全国社区住宅抽样的临终经验的多个方面 PWD以及临终关怀如何影响这种体验。此外，20年的数据将使我们能够 研究社区居住的残疾人在一段时间内获得临终关怀的机会以及最近临终关怀政策的影响 使用临终关怀的变化。本研究的目的为：1）评估安宁疗护对临终关怀品质的影响 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性） 护理）; 2）评估临终关怀对临终医疗服务利用的影响 （疗养院入院，住院，护理过渡和家庭死亡）;和3）表征纵向 社区居住的PWD使用临终关怀的模式，并量化医疗保险政策变化对 临终关怀使用率。从本提案中获得的知识将阐明临终关怀如何影响相关结果 在社区中进行终末期痴呆症护理，确定其使用的潜在障碍，从而在其他或 可能需要替代的护理模式，并为政策提供信息，以使我们的医疗保健系统为日益增长的 我们社区中老年痴呆症护理的普及率。