We hope to engage all collaborators (ADRC team; local, national and international colleagues; trainees, fellows, students; advisory council members; community partners, to name a few) to build a comprehensive resource page on Dementia and Related Disorders, a Speaker Forum, Network/Mentoring opportunities and other activities that foster education, collaboration, and inclusiveness of diverse perspectives, persons and experiences.

We encourage collaboration from community members, aspiring students and scientists, and established investigators in the field.  Together, we hope to make our world a little better each day in every way!

The committee is chaired by Patricia Rodriguez Espinosa, with main Administrative  Core support by Dr. Victor Henderson and Dr. Nusha Askari and is comprised of members from all of the cores of the ADRC: Harini Iyer, Kyan Younes, Carla Abdelnour, Janet Hwang, Amy Lin, Divya Channappa, Patricia Losada Moran, Krishna Bharani, Kaci Fairchild, Amanda Nicole Smith, Tammy Tran, Beth Mormino, Claudia Padula,  Birgitt Schuele, Hillary Vossler, and Windy McNerney.

JEDI Developmental Project (2023) 1:

Principal investigator: Michelle Lin, MD, MPH, MS, Associate Professor of Medicine

Title: Improving Access to Geriatric Emergency Care among Older Adults with Dementia

Project description: Older adults and persons living with dementia (PLWD) account for a growing share of U.S. Emergency Department visits. They are more likely to be hospitalized and to experience adverse events associated with hospitalization, including iatrogenic harm, functional decline, and readmissions. Geriatric Emergency Departments (GEDs) have emerged as a promising model of care for older adults and PLWD. However, little is known about disparities in access to GEDs and their adoption among hospitals serving historically marginalized groups. This project aims to address this knowledge gap by (1) measuring disparities in access to GEDs among PLWD, including differences by race, ethnicity, income, and geographic location and (2) identifying barriers and facilitators to the adoption of GEDs in safety-net hospitals serving PLWD. These findings will inform policy and practice recommendations to improve access to GEDs for PLWD and serve as preliminary data for an R01 to promote equity in the adoption of GEDs and reduce disparities for PLWD from historically marginalized groups.

JEDI Developmental Project (2023) 2:

Principal investigator: Holly Tabor, PhD, Associate Professor of Medicine, Stanford University

Title: IDD-TRANSFORM: Building an Engaged and Diverse Community-Based Cohort for Aging, Alzheimer’s, and Down’s Syndrome

Project description: While the importance of Alzheimer’s to overall public health has been long recognized, the etiology and challenges of Alzheimer’s in patients with Down Syndrome (DS) has been less studied or well characterized. In recent years, the high prevalence of Alzheimer’s disease in patients with DS, as well as the earlier age of onset, has led researchers to increase their interest and focus on studies of the disease in this population. However, such studies lack data about the specific etiology, characteristics, lived experiences, and health and healthcare access challenges of adults with DS in general, and most specifically aging adults with DS. It is imperative to engage with adults with DS and their caregivers themselves, in order to characterize their lived experience and understand the issues driving disparities in health outcomes and health care access. This direct engagement can help facilitate the development of interventions that are likely to improve health outcomes, health access, and quality of life for this population. The goal of our grant is to build an engaged and diverse community-based cohort to study AD and DS, and it has four aims to : 1) to create a Core Advisory Board of researchers, health care workers, adults with Down’s Syndrome (DS), DS caregivers, and community agencies/partners, to collaboratively design and implement a Community Based Participatory Research (CBPR) approach to studying Alzheimer’s and DS in a racially, ethnically, and socio-economically diverse population in the Bay Area; 2) To develop language- and culturally- concordant educational flyers and Virtual Health Forum sessions about DS and Alzheimer’s disease; 3) To characterize knowledge, needs, and lived experiences of DS adults with Alzheimer’s Disease, by conducting focus groups and interviews with adults with DS, caregivers of adults with DS, and community agencies/partners that serve adults with DS/IDD; and 4) Develop a research proposal to submit to NIH in Fall 2025 on DS and AD in diverse populations.