Centering our Values

Collaborators and Funding: University of Chicago Health and SHARE Network

Team: Harini Balu, Yuan Feng, Xuning Guo, Rachel Havard, Çagla Kuzu, Goeun Lee, McKinley Sherrod, Andreya Veintimilla, Catherine Wieczorek, Yueyue Yang, Jianing Zhong and Adithya Ravi

Mentors: Tomoko Ichikawa, Dr. Shellie Williams, Jeffrey Graupner

Period: August, 2019 to December, 2019

The project resulted in the creation of a toolkit of exercises and resources that would support the decision making process of caregivers of dementia patients, specifically pertaining to the African-American cultural context. 

My own personal contribution was specific to preparing for and conducting research activities and developing the content for the toolkit, ensuring the content was approachable and understandable for a large group of people with diverse literacy.

This work was supported in part by the University of Chicago Bucksbaum Institute for Clinical Excellence and the SHARE Network 

Research, Coding and Analysis

The research for this project was focused on speaking with caregivers of people experiencing dementia, social workers and medical experts who were experienced in geriatric care. The goal of conducting this research was to get a series of definitive accounts of experiences that dealt with the process of receiving and conveying sensitive information related to dementia and the caregiving process. We were also trying to develop an understanding of how people from the African American context wish to be portrayed in a narrative and visual medium. It was a singularly gratifying experience to be in the presence of very strong people who were willing to share their intensely personal stories with us.

In order to make these anecdotes and general feelings translate to our intent, we used a series of cards that could efficiently capture small pieces of information. We were then able to group these pieces together and derive a few guiding principles that would orient us through developing solutions that align with the necessities of the caregivers and medical practitioners.

Some of the groups that we created based on people’s responses to various representations of African-American people and culture

Some of the groups that we created based on people’s responses to various representations of African-American people and culture

Key ideas that began to emerge from conversations we had with caregivers of people experiencing dementia

Key ideas that began to emerge from conversations we had with caregivers of people experiencing dementia

The Toolkit

Based on our research activities, we were able to identify the need for respecting, accounting for and accommodating the values of caregivers and their families while making very sensitive decisions about finances, lifestyle, social engagement and even end-of-life expectations of the person experiencing dementia and their families.

This observation led us to start developing the toolkit in a manner that focused on the values and beliefs of the individuals involved. We focused on

  • Facilitating the caregiver and their loved one’s clear expression of their values, snapshots and memorable vignettes that honour their relationships and setting up a clear picture of the resources that are available to them in terms of emotional and physical support, finance and medical expertise.

  • Setting up clear expectations of the decisions they will have to make and engaging them in clearly understanding each of these decisions and their resulting repercussions

  • Reconciling the reality of these decisions with their values and beliefs

The entire toolkit is structured to address these three aspects and also provides a number of resources that would open up the scope for educating oneself as well as gain a wider range of resources. It is meant to be constantly revisited so as to keep pace with the volatile changes that are a product of dementia as well as with the volatility of human beliefs and values.

You can find an excerpted version of the toolkit here.