African Americans Fighting Alzheimer’s in Midlife (AA-FAiM)
In this study we aim to investigate how modifiable risk factors influence Alzheimer’s disease biomarkers, particularly in the African American community, through a unique cohort committed to the continued collection of longitudinal cognitive and biomarker data. The study aims to collect data on 500 research participants from the Wisconsin Alzheimer’s Disease Research Center and Wisconsin Registry for Alzheimer’s Prevention, including biomarker data on at least 40% of the cohort. We will examine the interplay of risk and resilience factors predicting longitudinal change in cognition. Because biomarker data are a major focus of AD research, we will also evaluate a recruitment and retention strategy for biomarker participation.
Study PI: Carey Gleason, PhD, MS
National Institute on Aging
R01-AG054059
Inclusion of Under-Represented Groups (IURG) Core
The Inclusion of Under-Represented Groups Core, or the IURG Core, is part of the Wisconsin Alzheimer’s Disease Research Center. The IURG Core currently works with the Wisconsin ADRC’s Clinical; Outreach, Recruitment and Engagement (ORE); Data Management and Statistical (DMS); and Biomarker cores to identify and resolve the barriers to research participation for African Americans and Native Americans.
Study PI: Sanjay Asthana, MD (center); Carey Gleason, PhD, MS (core)
National Institute on Aging
P30-AG062715
Addressing Alzheimer’s Disease and Related Dementias Disparities: The American Indigenous Cognitive Assessment (AMICA)
The American Indigenous Cognitive Assessment (AMICA) Project tackles the significant dementia disparity that exists for Indigenous populations by determining the scalability of recently developed, culturally tailored, brief cognitive tests for dementia, for use in three diverse American Indian (AI) populations — Oneida Nation in Wisconsin, Red Lake Ojibwe in Minnesota, and Urban Navajo/Pueblo population in New Mexico. Compared to the majority population, Indigenous rates of Alzheimer’s disease and related dementias (ADRD) are approximately three times higher. This research will adapt and validate a battery of complementary Indigenous cognitive assessment tools developed in Canada and Australia for use among AI populations in the United States.
Study PI: Kristen Jacklin, PhD (University of Minnesota Medical School Duluth Campus); Carey Gleason, PhD; Tassy Parker, PhD, RN (University of New Mexico)
Indigenous Cultural Understanding of Alzheimer’s Disease and Related Dementia Research and Engagement (ICARE)
This research is being conducted as a collaboration between the Memory Keepers Medical Discovery Team, University of Minnesota Medical School Duluth Campus, the Wisconsin Alzheimer’s Disease Research Center, and First Nation community members in Manitoulin Island, Ontario. The goal of the research is to improve the lives of American Indian/First Nations people with Alzheimer’s disease and related dementias by investigating the impact of the disease on patients, families and communities.
Study PI: Kristen Jacklin, PhD (University of Minnesota Medical School Duluth Campus)
National Institute on Aging
R01-AG062307
The Role of Social Media and Community Advocates in Addressing the Health Consequences of COVID-19 in Black, Latinx and American Indian Communities
This COVID-19 Response Grant explores utilizing social media and community advocates to address health consequences of COVID-19 in Black, Latinx and American Indian communities. The overarching goal of this project is to continue disseminating accurate information created by community advocates through social media about COVID-19 and evaluate the effectiveness of social media messages on changing beliefs, attitudes and adoption of behaviors related to COVID-19 and vaccination.
Study PIs: Carey Gleason, PhD, MS; Maria Mora Pinzon, MD, MS; Melissa Metoxen
Meaning Making of Dementia and the Caregiver Experience in the Oneida, WI Tribal Community
The Oneida Alzheimer’s Disease Community Advisory Board has identified caregiving as a topic that requires dedicated research focus. Thus, this study assesses meaning making of dementia, the caregiver role and community-based service use within the Oneida, WI Tribal community. In collaboration with the Oneida Dementia Care Specialist, we are able take a deeper look into a set of interviews originally conducted in the Oneida, WI Tribal community in 2018.
Study PIs: Dorothy Farrar-Edwards, PhD; Nickolas Lambrou, PhD; Grace Armstrong (UW–Madison Shapiro Scholar and Native American Center for Health Professions student)
Oneida Helping Oneida
The Oneida Nation has a number of excellent supportive services/resources available to support persons with dementia and their family members who provide assistance to them. However, the Oneida Alzheimer’s Disease Community Advisory Board has identified that many families do not avail themselves of the resources available. To better understand the barriers to use of these resources, this study aims to learn more about the extent to which Oneida community members are aware of various types of supportive services and intend to use them. In addition, we seek to identify community-specific factors that may impact service use by family caregivers, in order to better serve these caregivers in the future.
Study PI: Mary Wyman, PhD
Wisconsin Healthcare Utilization Cost Among American Indians/Alaskan Natives with and without ADRD
The goal of this study is to evaluate the additive healthcare utilization costs for American Indians/Alaskan Natives with Alzheimer’s Disease and Related Dementias after matching participants by age range, gender, county type (rural vs. urban), and presence of diabetes, emphysema/COPD, and myocardial infarction.
Study PI: Adrienne Johnson, PhD
National Institute on Aging
K23-AG067929
Stress and Resilience in Dementia (STRIDE)
The STRIDE study explores modifiable mechanisms contributing to dementia risk in American Indians/Alaska Natives (AI/AN), who are disproportionately impacted by ADRD. Data are being collected from participants enrolled in the Wisconsin Alzheimer’s Disease Research Center Clinical Core who self-identify as Native American. The STRIDE study uses comprehensive cognitive and biomarker characterization to map novel pathways linking life-spanning social contexts to cognitive aging processes.
Study PI: Megan Zuelsdorff, PhD
National Institute on Aging
R03-AG063303
Telomere Length, Neuropsychological Outcomes in Minoritized Populations, and Biomarkers of ADRD
The proposed research will advance the understanding of epigenetic factors and telomere length in predicting cognitive decline in African American and Native American who are at high-risk for Alzheimer’s Disease and Related Dementias.
PI: Lauren W. Yowelunh McLester-Davis (Neuroscience Doctoral Program student at Tulane University)
Past Projects:
Cross-sectional and Longitudinal Racial Disparity in Molecular Biomarkers of Alzheimer’s Disease
This project proposes to assemble the largest biomarker cohort of African Americans for Alzheimer’s disease (AD) by leveraging on both the existing biomarker samples and data from five major biomarker studies of AD and prospectively collected biomarker samples and imaging scans from these studies. The potential racial disparity in molecular biomarkers of AD, as well as in their predictability to subsequent cognitive outcomes, if confirmed by the proposed study on the largest AA biomarker cohort, may imply differential treatment responses between races, and hence will have profound implications to the design and analyses of ongoing and future prevention and treatment trials of AD.
Study PIs: Chengjie Xiong, PhD (Washington University)
Kronos Early Estrogen Prevention Study (KEEPS) Continuation
The purpose of KEEPS Continuation is to assess effects of menopausal hormone therapy and normal aging on cognitive performance and imaging markers of brain structure in women approximately 12 years after enrolling in the KEEPS. KEEPS participants were randomized to oral or transdermal estrogen treatments or placebo within three years of menopause. This is a follow-up study of these women approximately 12 years after randomization (8 years after study completion).
Study PIs: Kejal Kantarci, MD (Mayo Clinic Rochester); Carey Gleason, PhD, MS (co-PI)
National Institute on Aging
RF1-AG057547
IURG Supplement
The IURG Supplement is a project to expand community-based recruitment and retention activities by supporting collaborative initiatives between the IURG Core and its American Indian partners — the Oneida Alzheimer’s Disease Community Advisory Board (CAB) and the Native American Center for Health Professions. The supplement’s goals are as follows:
- Support the Oneida Alzheimer’s Disease CAB to guide culturally tailored outreach, education and research
- Reach middle-aged adults, military Veterans and youth with dementia curriculum
- Work to reduce stigma associated with Alzheimer’s disease and related dementias by providing outreach and education
- Continue efforts to optimize access to culturally competent dementia diagnostics
Study PI: Sanjay Asthana, MD (center); Carey Gleason, PhD, MS (core)
National Institute on Aging
P30-AG062715
Proposals in Development
Approached by Menominee Aging Unit, asking for partnership for dementia initiatives
The Wisconsin ADRC IURG Core has been approached by the Menominee Dementia Care Specialist (K. Waukau) and the Aging Unit director (E. Kowalkowski) to explore the possibility of establishing ADRD focused partnership like what was established at Oneida. At present, we are looking for additional faculty who would be willing to lead this effort and who could obtain funding to support a Community Advisory Board.
Working with NIH/NIA Alzheimer’s Center program leadership to address data sovereignty policies
Before requesting permission from tribes to formally recruit participants in Oneida, IURG leaders are working with NIH ADRC leadership to formalize additional oversight of data and samples provided by AI participants. Ideally, the oversight can be provided by Native American scientists, elders and similar subject matter experts.
In particular, we are advising the director of the NIH Center’s program (N. Silverberg) and the directors of the National Alzheimer’s Coordinating Center (W. Kukull) and the National Centralized Repository for Alzheimer’s Disease (T. Foroud) on 1) the expectation from tribal partners for data sovereignty, 2) circumstances that should prompt additional oversight.