Centering Our Values
Dementia-care materials rarely reflected the culture and values of African American caregivers and patients.
Summary
African Americans are two to three times as likely as white Americans to develop Alzheimer’s disease and related dementia, yet educational materials tailored to this community were largely missing. Starting in fall 2019, Tomoko Ichikawa led a Communication Design Workshop of 11 ID students working with Dr. Shellie Williams of UChicago Medicine to develop the Caregiver Decision Support Tool — a 56-page workbook, Centering Our Values: A Guide to Making Dementia Care Decisions Together, that uses graphic narrative and culturally grounded illustrations to walk caregivers and patients through difficult care decisions together. The prototype was later developed into a public website, launched by UChicago Medicine in 2023.
Why it’s important
Per the project page: African Americans are two to three times as likely as white Americans to develop Alzheimer’s disease and related dementia, yet educational materials tailored to this community were lacking. The page quotes Ichikawa: existing materials often lacked representation (“if you don’t look like that person in that photograph, you don’t feel a connection to that information”) and were built to be “universal,” missing values specific to a given community. A cited abstract from the Journal of the American Geriatrics Society (April 2020) notes African American caregivers are 1.7 times more likely than non-Hispanic white caregivers to choose aggressive end-of-life care and have lower rates of advance-directive documentation — linked to being less clear on the disease’s common course.
Real-world impact
The prototype underwent focus-group testing with caregivers in Spring 2020. Findings were further analyzed and implemented into a public digital resource by Gauri Bhatt (MDes 2022) in 2021. UChicago Medicine publicly launched the resulting Centering Our Values website (announced June 22, 2023), which the page describes as offering educational materials, a hands-on toolkit, and worksheets for caregivers. The original workbook had also been accepted for presentation at the American Geriatrics Society’s 2020 Annual Scientific Meeting and the 2020 Graphic Medicine Conference, though the project page notes both were cancelled due to the coronavirus outbreak.
To learn more: https://centeringourvalues.org/
Adapted from: “Alzheimer’s and Dementia: Promoting Equity in Care and Outcomes.” Institute of Design, Illinois Institute of Technology. https://id.iit.edu/projects/alzheimers-and-dementia-promoting-equity-in-care-and-outcomes/. By Andrew Connor. Additional source: “ID Workshop Leads to a New Dementia Support Website,” Institute of Design, June 22, 2023, https://id.iit.edu/story/id-workshop-leads-to-a-new-dementia-support-website/ (no byline).
