New York City Hispanic Dementia Caregiver Research Program (NHiRP)

描述（由申请人提供）：我们提交此申请以响应RFA-NR-13-001“在社会人口因素（R 01）背景下解决阿尔茨海默病患者非正式护理人员的需求”。西班牙裔是一个快速增长的人口谁患有不成比例的痴呆症，包括阿尔茨海默氏症，和相关的生活负担相比，非西班牙裔白人。关于这些照顾者的主要特征和需求以及他们如何影响长期结果，干预措施的有效性以及对他们和痴呆症患者健康至关重要的信息管理，我们知之甚少。我们建议通过创建纽约市西班牙裔痴呆症护理人员研究计划（NHiRP）来解决这些问题，这是一个多方面的新颖研究计划，旨在了解痴呆症患者的西班牙裔护理人员的特殊需求，并为他们量身定制基于证据的临床干预措施。我们在应对RFA方面处于独特的地位，因为我们的多学科团队正在进行北方曼哈顿护理人员干预项目（NOCIP，clinicaltrials.gov ID NCT 01306695），这是一项为期6个月的随机试验，旨在测试纽约大学（NYU）护理人员干预在160名西班牙裔痴呆症患者亲属护理人员中的有效性。NHiRP将建立在NOCIP的资源基础上，并将由多个PI共同领导，Jose Luchsinger，MD，MPH，Roberto Lucero，RN，PhD和玛丽Mittelman，DrPH，他们将合并他们在流行病学，临床试验，少数民族健康，心理健康，医学生物信息学， 并努力实现其三个主要目标：1。对NOCIP中的照顾者进行纵向随访; 2.建立西班牙裔照顾者登记册，以研究社会人口学因素与其照顾相关需求的关系;调整和测试基于网络的个人健康信息管理系统干预措施，与注册成员合作，根据其社会人口特征和需求量身定制。NHiRP将通过以下具体目标实现其目标：1.在为期5年的观察性研究阶段1和NOCIP入组后5年，比较NOCIP研究组之间护理人员抑郁症状和负担的变化; 2.研究300名新注册的成员的关键社会人口学特征，照顾者负担，压力和抑郁症状的相互作用-关键特征包括性别和家庭地位，就业，文化适应，社会经济地位（SES），社会支持和应对。迭代开发，完善和测试基于网络的健康信息系统与护理人员在登记处。

DESCRIPTION (provided by applicant): We submit this application in response to RFA-NR-13-001 "Addressing Needs of Informal Caregivers of Individuals with Alzheimer's Disease in the Context of Socio-demographic Factors (R01)". Hispanics are a rapidly growing population who suffer disproportionately from dementia, including Alzheimer's dementia, and related caregiving burdens compared to Non-Hispanic Whites. Little is known about the key characteristics and needs of these caregivers and how they influence long-term outcomes, the effectiveness of interventions, and the management of information critical to their health and that of persons with dementia. We propose to address these questions by creating the New-York-City Hispanic-dementia-caregiver Research Program (NHiRP), a multifaceted, novel research program designed to understand the particular needs of and tailor evidence-based clinical interventions to Hispanic caregivers of persons with dementia. We are uniquely positioned to respond to this RFA because our multidisciplinary team is conducting the Northern Manhattan Caregiver Intervention Project (NOCIP, clinicaltrials.gov ID NCT01306695), a randomized trial of 6-months duration testing the effectiveness of the New York University (NYU) Caregiver Intervention in 160 Hispanic relative caregivers of persons with dementia. The NHiRP will build on the resources of NOCIP and will be co- led by multiple PIs, Jose Luchsinger, MD, MPH, Roberto Lucero, RN, PhD and Mary Mittelman, DrPH, who will merge their complementary areas of expertise in epidemiology, clinical trials, minority health, mental health, medical bioinformatics, and caregiving research to achieve its 3 main goals: 1. Conduct a longitudinal follow-up of caregivers in NOCIP; 2.Create a registry of Hispanic caregivers in order to study the relation of socio- demographic factors with their caregiving-related needs; 3. Adapt and test a web-based personal health information management system intervention, working with registry members, tailored to their socio- demographic characteristics and needs. NHiRP will achieve its goals through the following specific aims: 1. To compare caregiver change in depressive symptoms and burden between the NOCIP study arms in a 5-year observational study phase 1 and 5 years after NOCIP enrollment; 2. To examine the interplay of key socio- demographic characteristics, caregiver burden, stress, and depressive symptoms in 300 members from our newly formed registry-Key characteristics include sex and family position, employment, acculturation, socioeconomic status (SES), social support, and coping; 3. To iteratively develop, refine, and test a web-based health information system with caregivers in the registry.