From empathy to action: design thinking as a catalyst for community-based participatory research in dementia caregiving

Abstract

This article delves into the understudied realm of investigating the potential benefits of integrating design thinking into community-based participatory research within the context of culturally diverse dementia caregivers. Following the Double-Diamond process model, we conducted a series of workshops with 15 family caregivers of dementia patients from three distinct communities (multi-racial, Black, and Latino ethnicity) to gain insights into their daily experiences and co-create interventions that could address their pressing challenges. The research question for this study aimed to explore the potential benefits of design thinking in community-based research on dementia caregiving. Our findings contribute to the health design community by demonstrating the potential of design thinking to (1) uncover common and distinct challenges in diverse communities, (2) translate findings into actionable solutions, and (3) design tailored interventions that are responsive to the context-specific needs of the community. Our study leads us to conclude that the integration of design thinking as a catalyst in community-based participatory research has the potential to amplify the identification of nuanced and previously unexamined challenges through empathetic exploration, and to propose innovative interventions that are more amenable to uptake and acceptance within the community.

Keywords:

• Community-based participatory research
• human centered design
• design thinking
• dementia caregiving

Acknowledgement

We sincerely thank all our participants, including dementia caregivers and clinical researchers, who have participated in this study. Special thanks are extended to Lai Reed, Maria M. Quiñones, Karah Alexander, Fayron Recha Epps, and Crystal M. Glover for their invaluable assistance in connecting us with caregivers and facilitating the workshops.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This research was supported from the National Institute on Aging (NIH) by grant number # 5P30AG064200-02 and 5P30AG064200-02, awarded to Hepburn and Perkins.

Notes on contributors

Leila Aflatoony

Leila Aflatoony, Ph.D., is an assistant professor in the School of Industrial Design at the Georgia Institute of Technology. She is an interdisciplinary researcher with expertise in utilizing participatory approaches and community-engaged practices to co-design technological interventions aimed at improving the health and living conditions of individuals with disabilities.

Kenneth Hepburn

Kenneth Hepburn, PhD, Professor in the Nell Hodgson Woodruff School of Nursing at Emory University, co-directs the Emory Roybal Center for Dementia Family Mastery; his research focuses on the development of psychoeducational programs to enhance a sense of mastery in family members who care for persons living with dementia illnesses.

Molly M. Perkins

Molly M. Perkins, Ph.D. is an associate professor in the Emory University School of Medicine Division of Geriatrics and Gerontology and the Atlanta Site Director for Research for the Birmingham/Atlanta VA Geriatric Research, Education, and Clinical Center (GRECC). She also co-directs the NIH Emory Roybal Center for Dementia Caregiving Mastery.