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.
The NHiRP will generate a unique hybrid program of observational and interventional research to understand the needs of the rapidly growing population of Hispanic caregivers and to use this knowledge to design, adapt, and test novel, socio-demographically tailored web-based interventions.
|Luchsinger, José A; Burgio, Louis; Mittelman, Mary et al. (2018) Comparative Effectiveness of 2 Interventions for Hispanic Caregivers of Persons with Dementia. J Am Geriatr Soc 66:1708-1715|
|Iribarren, Sarah; Stonbraker, Samantha; Suero-Tejeda, Niurka et al. (2018) Information, communication, and online tool needs of Hispanic family caregivers of individuals with Alzheimer's disease and related dementias. Inform Health Soc Care :1-20|
|Arcia, Adriana; Woollen, Janet; Bakken, Suzanne (2018) A Systematic Method for Exploring Data Attributes in Preparation for Designing Tailored Infographics of Patient Reported Outcomes. EGEMS (Wash DC) 6:2|
|Woollen, Janet; Bakken, Suzanne (2016) Engaging Patients With Advance Directives Using an Information Visualization Approach. J Gerontol Nurs 42:16-20|
|Yoon, Sunmoo (2016) What Can We Learn About Mental Health Needs From Tweets Mentioning Dementia on World Alzheimer's Day? J Am Psychiatr Nurses Assoc 22:498-503|
|Luchsinger, José A; Burgio, Louis; Mittelman, Mary et al. (2016) Northern Manhattan Hispanic Caregiver Intervention Effectiveness Study: protocol of a pragmatic randomised trial comparing the effectiveness of two established interventions for informal caregivers of persons with dementia. BMJ Open 6:e014082|
|Mamykina, Lena; Smaldone, Arlene M; Bakken, Suzanne R (2015) Adopting the sensemaking perspective for chronic disease self-management. J Biomed Inform 56:406-17|
|Luchsinger, José A; Tipiani, Dante; Torres-Patiño, Gabriela et al. (2015) Characteristics and mental health of Hispanic dementia caregivers in New York City. Am J Alzheimers Dis Other Demen 30:584-90|
|Sheehan, Barbara; Lucero, Robert J (2015) Initial Usability and Feasibility Evaluation of a Personal Health Record-Based Self-Management System for Older Adults. EGEMS (Wash DC) 3:1152|
|Brennan, Patricia Flatley; Bakken, Suzanne (2015) Nursing Needs Big Data and Big Data Needs Nursing. J Nurs Scholarsh 47:477-84|
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