INDIANAPOLIS – Understanding the strategies and unmet needs of caregivers managing medications for people with Alzheimer’s disease or related dementias may improve the lives of both caregivers and patients. A recent study, whose authors include Regenstrief Institute Research Scientists Noll Campbell, PharmD, M.S., and Malaz Boustani, M.D., MPH, describes the strategies and unmet needs of caregivers managing medications for people with Alzheimer’s disease or related dementias.
By employing a user-centered design (UCD) approach and using virtual contextual inquiry, the researchers identified three distinct caregiver personas: “ Checklist Cheryl ,” “ Social Sam ,” and “ Responsive Rhonda .” Each persona embodies a different approach to medication management, varying in organization, technology use, collaboration and response to challenges.
The study found that caregivers employ diverse strategies, blending technology-based with physical methods. It also determined that needs — such as better symptom tracking, clearer communication guidelines and support for self-care — are not fully addressed by current digital or non-digital interventions. These nuanced personas can guide the design of customized caregiver support and digital health tools.
Personas provide insight
The primary resource provided by the study is the set of three detailed, empirically developed caregiver personas. Each persona profile includes that caregiver’s approaches to acquiring, organizing and administering medication, monitoring symptoms, communicating with care networks and seeking medication information. The research also offers recommendations for digital health interventions tailored to each persona’s unique needs, such as apps with customizable reminders, symptom and side effect trackers, and platforms for social support. The methodology — virtual contextual inquiry — also serves as a practical approach for future research.
Who these resources help
These resources are intended for multiple audiences:
How these findings impact patient care
Publication
The article, “Creating User Personas to Represent the Needs of Dementia Caregivers Who Support Medication Management at Home: Persona Development and Qualitative Study,” is published in JMIR Aging.
In addition to their Regenstrief Institute appointments, study co-author Dr. Campbell is on the faculties of Purdue University and Indiana University and co-author Dr. Boustani is on the faculty of IU School of Medicine.
Funding
This work was supported by the National Institutes of Health’s (NIH’s) National Institute on Aging (grant 1R21AG072418). The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.
Authors and affiliations as listed in the publication
Anna Jolliff 1 , Priya Loganathar 2 , Richard J Holden 3 , Anna Linden 2 , Himalaya Patel 3,4 , Jessica R Lee 5 , Aaron Ganci 6 , Noll Campbell 7,8,9 , Malaz Boustani 8,9,10 , Nicole E Werner 1
1 Center for Research and Innovation in Systems Safety, Department of Anesthesiology, Vanderbilt University Medical Center, Nashville, TN, United States.
2 Department of Industrial & Systems Engineering, University of Wisconsin - Madison, Madison, WI, United States.
3 Department of Health & Wellness Design, School of Public Health, Indiana University Bloomington, Bloomington, IN, United States.
4 Health Systems Research Center for Health Information and Communication, Richard L Roudebush Veterans Affairs Medical Center, United States Department of Veterans Affairs, Indianapolis, IN, United States.
5 Department of Human Systems Engineering, Ira A. Fulton Schools of Engineering, Arizona State University, Mesa, AZ, United States.
6 Herron School of Art + Design, Indiana University Indianapolis, Indiana University Indianapolis, Indianapolis, IN, United States.
7 Department of Pharmacy Practice, Purdue University, West Lafayette, IN, United States.
8 Indiana University Center for Aging Research, Regenstrief Institute, Indianapolis, IN, United States.
9 Center for Health Innovation and Implementation Science, Indiana University, Indianapolis, IN, United States.
10 Department of Medicine, Indiana University, Indiana University School of Medicine, Indianapolis, IN, United States.
JMIR Aging
Creating User Personas to Represent the Needs of Dementia Caregivers Who Support Medication Management at Home: Persona Development and Qualitative Study
25-Jul-2025