Empowering Dementia Caregivers using a Culturally Relevant Cyber-Human System

African Americans are more frequently diagnosed with dementia than other groups in the United States. Despite the prevalence, there is little research targeting technology use to enhance the functioning of African Americans living with dementia and their caregivers. This study utilizes a novel approach to develop a research model that advances cyber-human systems research on dementia caregiving in the African American community. The project uses a cultural foundation to explore the needs and preferences of users to drive the development of technological systems that can be readily adopted by the African American community. Moreover, this study will contribute to increasing awareness of culturally-sensitive research approaches to improve the understanding of the use of technology in dementia. Ultimately, this project will serve as the catalyst for future technological advances in culturally-relevant smart and connected health.

The overarching goal of this project is to develop a culturally-relevant cyber-human system than can improve the effectiveness of caregivers of people with dementia -- and subsequently other diverse populations -- by reducing caregiver burden. This cyber-human system modeling approach utilizes information from dementia agitation episodes, self-reported caregiver response (e.g., mood and perceived stress), as well as unique attributes of the African American community with dementia. These data are used in a cyber-human system to predict unbiased agitation models so that caregivers and can be primed with an optimal response that reduces their burden and supports the functioning of the person with dementia. The results of this study will enhance the use of cyber-human systems for family caregiving.

This award reflects NSF's statutory mission and has been deemed worthy of support through evaluation using the Foundation's intellectual merit and broader impacts review criteria.