Development of a dashboard analytics platform for dementia caregivers to understand diagnostic test results

Abstract

Alzheimer's Disease and Related Dementias (ADRD) create unimaginable stress and financial burden in the lives of informal caregivers, including family and friends. However, the current healthcare system is not designed to incorporate caregivers in the healthcare team model for an early diagnostic process. The objectives of the focus group study are twofold: 1) to understand the digital information needs of caregivers to develop a user-friendly digital health app for the early diagnosis of ADRD patients, and 2) to assess the willingness of caregivers to be included in the early diagnosis process using a digital health app. We conducted a focus group study to understand caregivers' digital information needs and willingness to participate in the early diagnosis of ADRD. A total of 25 caregivers participated in the five focus group sessions. Data analysis revealed three main themes: 1) eagerness to be involved with the healthcare team for diagnosis, 2) facilitating digital communication for early diagnosis, and 3) chronicling the journey. Our unique finding demonstrates caregivers' willingness to participate in diagnostics by utilizing innovative digital health applications. The result of this study informs an intuitive digital interface based on user-centered design.