New York City Hispanic Dementia Caregiver Research Program (NHiRP)

描述（由申请人提供）：我们根据RFA-NR-13-001“在社会人口因素背景下解决阿尔茨海默病患者非正式照顾者的需求（R01）”提交本申请。与非西班牙裔白人相比，西班牙裔是一个快速增长的人口，他们不成比例地患有痴呆症，包括阿尔茨海默氏痴呆症，以及相关的护理负担。对于这些护理人员的主要特征和需求，以及它们如何影响长期结果、干预措施的有效性，以及对护理人员和痴呆症患者的健康至关重要的信息的管理，人们知之甚少。我们建议通过创建纽约市西班牙裔痴呆症护理研究项目（NHiRP）来解决这些问题，这是一个多方面的、新颖的研究项目，旨在了解痴呆症患者的西班牙裔护理人员的特殊需求，并为他们量身定制循证临床干预措施。我们有独特的优势来应对这种RFA，因为我们的多学科团队正在进行北曼哈顿护理人员干预项目（NOCIP, clinicaltrials.gov ID NCT01306695），这是一项为期6个月的随机试验，测试纽约大学（NYU）护理人员干预在160名痴呆症患者的西班牙裔亲属护理人员中的有效性。NHiRP将以NOCIP的资源为基础，并将由多位pi共同领导，Jose Luchsinger， 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，少数民族健康，心理健康，医学生物信息学，

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.