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:
- Health system designers and intervention developers, to inform the creation of customized digital or non-digital tools for dementia caregivers.
- Caregiver support organizations and policymakers, who can use these personas to advocate for targeted support programs and resources.
- Researchers, as a framework and methodological guide for studying and addressing the complexities of caregiver work in dementia and other chronic illnesses.
How these findings impact patient care
- Patient Care: By addressing caregivers' unmet needs, such as enhancing medication tracking and reducing caregiver stress, interventions guided by these personas can directly improve medication adherence and overall health outcomes for people with dementia.
- Health Systems: Personas enable the design of more effective supports and technology tools (like smartphone apps or web-based platforms) that are better matched to user needs, potentially increasing engagement and success rates of adherence interventions.
- Future Research: The personas provide a robust, nuanced template for future studies; expanding research to more diverse caregiver populations may uncover additional needs and solutions. The user-centered, virtual methodology is also broadly applicable for studying caregiving in other health contexts.
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 Jolliff1, Priya Loganathar2, Richard J Holden3, Anna Linden2, Himalaya Patel3,4, Jessica R Lee5, Aaron Ganci6, Noll Campbell7,8,9, Malaz Boustani8,9,10, Nicole E Werner1
1Center for Research and Innovation in Systems Safety, Department of Anesthesiology, Vanderbilt University Medical Center, Nashville, TN, United States.
2Department of Industrial & Systems Engineering, University of Wisconsin - Madison, Madison, WI, United States.
3Department of Health & Wellness Design, School of Public Health, Indiana University Bloomington, Bloomington, IN, United States.
4Health 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.
5Department of Human Systems Engineering, Ira A. Fulton Schools of Engineering, Arizona State University, Mesa, AZ, United States.
6Herron School of Art + Design, Indiana University Indianapolis, Indiana University Indianapolis, Indianapolis, IN, United States.
7Department of Pharmacy Practice, Purdue University, West Lafayette, IN, United States.
8Indiana University Center for Aging Research, Regenstrief Institute, Indianapolis, IN, United States.
9Center for Health Innovation and Implementation Science, Indiana University, Indianapolis, IN, United States.
10Department of Medicine, Indiana University, Indiana University School of Medicine, Indianapolis, IN, United States.
