New York City Hispanic Dementia Caregiver Research Program (NHiRP)

描述(由申请人提供)：我们提交此申请是为了响应RFA-NR-13-001“在社会人口因素(R01)的背景下解决阿尔茨海默病患者的非正式照顾者的需求”。与非西班牙裔白人相比，拉美裔美国人是一个快速增长的人口，他们患有痴呆症，包括阿尔茨海默氏症，以及相关的护理负担。人们对这些照料者的主要特征和需求以及它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的管理知之甚少。我们建议通过创建纽约市拉美裔痴呆症照顾者研究计划(NHiRP)来解决这些问题，这是一个多方面的、新颖的研究计划，旨在了解痴呆症患者的拉美裔照顾者的特殊需求并为其量身定做基于证据的临床干预措施。我们处于独特的地位来应对这种RFA，因为我们的多学科团队正在实施曼哈顿北部照顾者干预项目(NOCIP，Clinicaltrials.gov ID NCT01306695)，这是一项为期6个月的随机试验，旨在测试纽约大学(NYU)照顾者干预措施在160名痴呆症患者的拉美裔亲属照顾者中的有效性。NHiRP将建立在NOCIP的资源基础上，并将由多名PI共同领导，Jose Luchinger，MD，MPH，Roberto Lucero，RN，PhD和Mary Mittelman，DrPH，他们将合并他们在流行病学、临床试验、少数族裔健康、心理健康、医学生物信息学、 为实现其3个主要目标而开展的护理和护理研究：1.对国家护理方案的护理人员进行纵向跟踪；2.建立拉美裔护理人员登记册，以研究社会人口因素与其护理相关需求之间的关系；3.调整和测试基于网络的个人健康信息管理系统干预措施，与登记处成员合作，根据其社会人口特征和需求量身定做。NHiRP将通过以下具体目标实现其目标：1.在NOCIP注册后的5年观察性研究阶段1和5年中，比较NOCIP研究部门之间照顾者抑郁症状和负担的变化；2.从我们新成立的登记处检查300名成员中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、社会经济状况(SES)、社会支持和应对；3.反复开发、改进和测试基于Web的健康信息系统，注册者中有照顾者。

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.