Hospice Care for Community-Dwelling Persons with Dementia

RP5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，并日益加剧 确保在家中获得高质量临终关怀的压力。美国死者的比例 在家中死亡的人从2000年的22%增加到2017年的31%，而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，尤其是在 痴呆症的背景。居住在家中的痴呆症(PWD)患者的医学敏锐度与 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，以及跨医疗保健设置的频繁过渡。 临终关怀是家庭护理生命末期重病患者的主要模式。安宁疗养院提供 包括疼痛和症状管理以及心理社会在内的跨学科护理体系， 精神和照顾者支持，目标是使个人在生命结束时能够留在家里。这个 临终关怀改善社区居住的残障人士及其家人的临终体验的潜力是 巨大的。然而，我们对痴呆症患者使用临终关怀所产生的影响的理解几乎是 独家以疗养院环境为基础。我们缺乏对人口层面的影响的了解 为那些在生命末期仍留在社区的残障人士提供临终关怀。 我们将通过两项以人口为基础的研究--国民健康和老龄化--来解决这些知识差距 趋势研究和健康和退休调查，包含丰富的人口统计、社会经济、医疗保健 老年人的利用情况和临终关怀评估。这些数据集提供了前所未有的 有机会审查全国社区住宅样本的临终体验的多个方面 以及临终关怀对这种体验的影响。此外，这些数据的20年时间跨度将使我们能够 检查社区居住的残障人士随时间推移获得临终关怀的情况以及最近临终关怀政策的影响 临终关怀用途的变化。我们的目标是：1)评估临终关怀对临终关怀质量的影响 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性 护理)社区居住的残障人士；2)评估临终关怀对临终关怀利用的影响 (疗养院入院、住院、护理过渡和家庭死亡)；以及3)纵向特征 社区居住的残障人士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。从这项建议中获得的知识将阐明临终关怀如何影响相关结果 在社区进行临终痴呆症护理，找出使用它的潜在障碍，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，使我们的医疗体系为日益增长的 在我们的社区中，临终痴呆护理的普及率。

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.