Palliative Care for Persons with Late-stage Alzheimer's and Related Dementias and their Caregivers a Randomized Clinical Trial

摘要 阿尔茨海默病和相关痴呆症(ADRD)每年影响560万美国人 年成本超过1570亿美元。家庭照顾者体验非凡的身体， 情绪和经济压力。自认为是西班牙裔/拉丁裔的人的可能性是后者的1.5倍 发展ADRD。三分之一的拉美裔/拉丁裔照顾者报告说，偏见、信息贫乏和 实际障碍限制了获得ADRD专科护理的机会。因急性疾病住院的人数为 在ADRD晚期很常见，也为痴呆症患者提供了一个独特的机会 姑息治疗以解决痛苦和减少负担治疗，因为72%的医院 有姑息治疗团队。针对痴呆症的姑息治疗的证据很少，而且它的 为满足拉美裔/拉丁裔家庭的需求而进行的文化适应是一个重大的研究空白。 我们的研究团队正在进行ADRD-PC研究(R01AG065394)，这是一个多站点 第二阶段疗效临床试验，这是痴呆症姑息治疗的第一个严格测试 干预。晚期痴呆症患者和他们的照顾者在 因急性疾病住院治疗。DUAD随机接受ADRD-PC干预(专科 姑息治疗+结构化照顾者教育+过渡期护理)或控制(教育 关于痴呆症护理的材料)，并在出院后60天内进行随访。招生 于2021年11月在所有网站开始，并在时间表上。因此，我们处于独特的地位，可以 及时利用研究基础设施来弥补这一差距。 我们的研究目标是从文化上量身定做ADRD-PC干预，并进行 改良式ADRD-PC介入治疗晚期糖尿病的可行性临床试验 自称西班牙裔/拉丁裔的ADRD及其家庭照顾者。我们将进行 利益攸关方知情改编研究材料和程序(目标1)，招收50人 患有晚期ADRD的西班牙裔/拉丁裔成年人和他们的家庭照顾者住院。 我们实现这一目标的具体目标是：目标1：适应和实施ADRD-PC 在文化和语言上适合这一人群的学习材料，由 拉美裔/拉美裔利益攸关方小组。目标2：确定可行性、可接受性和 ADRD-PC干预对n=50名西班牙裔/拉丁裔双亲的初步疗效 一项试点随机临床试验中的晚期痴呆。 影响：ADRD-PC临床试验的这一补充具有潜在的积极影响 认为自己是西班牙裔的人在ADRD护理和研究方面存在健康差距 患有晚期痴呆症的拉丁裔和他们的家庭照顾者。

ABSTRACT Alzheimer’s disease and related dementias (ADRD) affect 5.6 million Americans at an annual cost of over $157 billion. Family caregivers experience extraordinary physical, emotional and financial strain. People who identify as Hispanic / Latino are 1.5 times as likely to develop ADRD. One in 3 Hispanic / Latino caregivers report that bias, poor information and practical barriers limit access to specialty ADRD care. Hospitalizations for acute illnesses are common in late-stage ADRD, and also present a unique opportunity for dementia-specific palliative care to address suffering and reduce burdensome treatments, since 72% of hospitals have palliative care teams. Evidence for dementia-specific palliative care is rare, and its cultural adaptation to meet the needs of Hispanic / Latino families is a major research gap. Our research team is conducting the ADRD-PC study (R01AG065394), a multi-site Stage II efficacy clinical trial that is the first rigorous test of a dementia palliative care intervention. People with late-stage dementia and their caregivers are enrolled during a hospitalization for acute illness. Dyads are randomized to the ADRD-PC intervention (specialty palliative care + structured caregiver education + transitional care) or control (educational materials on dementia caregiving) arms and followed for 60-days post discharge. Enrollment began in all sites in November 2021, and is on timeline. We are thus uniquely positioned to leverage research infrastructure in a timely way to address this gap. Our research objective is to culturally tailor the ADRD-PC intervention, and conduct a pilot feasibility clinical trial of the adapted ADRD-PC intervention for people with late-stage ADRD who self-identify as Hispanic / Latino and their family caregivers. We will conduct stakeholder-informed adaptation of study materials and processes (Aim 1), and enroll n=50 hospitalized dyads of Hispanic / Latino adults with late-stage ADRD and their family caregivers. Our Specific Aims to achieve this objective are: Aim 1: To adapt and implement ADRD-PC study materials that are culturally and linguistically appropriate for this population, guided by a panel of Hispanic / Latino stakeholders. Aim 2: To determine the feasibility, acceptability and preliminary efficacy of the ADRD-PC intervention for n= 50 Hispanic / Latino dyads living with late-stage dementia in a pilot randomized clinical trial. IMPACT: This supplement to the ADRD-PC clinical trial has the potential to positively impact existing health disparities in ADRD care and research for people who identify as Hispanic / Latino with late-stage dementia and their family caregivers.