Inclusive Design and Modeling: A Two-Phased Approach to Designing Dementia Caregiver Empowerment Interventions

The frequency and severity of agitation episodes in persons with dementia (PWD) continue to influence the quality of life and successful aging in place. Agitation episodes have a major impact on the life of a caregiver as well, resulting in stress and depression. There is a possibility to determine stimuli that covary with agitation episodes and develop interventions, but there is a need to develop systems and methods to develop interventions. A collaboration that includes North Carolina Agricultural and Technical State University, the University of Virginia, and The Carilion Center for Healthy Aging is developing a Cybersociophysical Systems (CSPS) to measure different environmental and behavioral factors in order to empower caregivers of people with dementia. This research has focused on the early concepts and modeling of two aspects of CSPS (1) the inclusive design of a user interface of an android application that presents interventions in the form of just-in-time notifications to the caregiver; and (2) exploring an inclusive model for intervention using data obtained by using behavioral and computer simulation of a CSPS. In this research, a practical approach to an inclusive design of a user interface was developed and demonstrated based on the Design Wheel methodology. This research generated two caregiver personas and integrated the personas with usability evaluation to develop a user-centered inclusive design approach. Further, a simulation study was conducted to test a structural equation model (SEM) that demonstrated the influence of behavioral and environmental factors as well as caregiver disempowerment on agitation propensity. The outcomes of the SEM presented the possibility of developing interventions using the simulated data. Recommendations for future studies are to obtain frequent caregiver observations and to use the combination of CMAI and Teager energy values to validate the agitation in PWD.