Integration of health information technology and promotion of personhood in family-centered dementia care

Abstract

BACKGROUND: Alzheimer's disease and related dementias (ADRD) are leading causes of disability and often result in communication deficits that can complicate ADRD caregiving and clinical care. Augmentative and Alternative Communication (AAC) devices have been shown to provide assistance in communication for persons with ADRD, although many of these devices have been criticized for limited ability to customize content or design, and not addressing the impact of communication deficits on the larger family unit. This program of research has been informed by related theoretical frameworks: person-centered (PCT) and family-centered theories (FCT). METHOD: An interdisciplinary team working with stakeholders are designing a novel information technology prototype with a touchscreen to promote communication and personhood for persons with ADRD. This improved ACC device is best described as an AAC Plus. The AAC Plus goes beyond traditional AAC in that it can be integrated into an existing healthcare delivery system and provide real-time clinical data and health trends to the healthcare provider for early detection, intervention, and monitoring of clinical symptoms. In addition, the AAC Plus: (1) is designed to promote engagement and communication for interactions between the caregiver and person with ADRD using ubiquitous touchscreen technology; (2) facilitates tracking of behavioral and other clinical information about the person with ADRD, such as sleep and appetite; (3) has easily customizable interfaces for the caregiver and person with ADRD. RESULT: Usability and feasibility will be tested using common use case scenarios, user experience testing, alpha testing, and beta testing methodologies to evaluate ease-of-use and cognitive ergonomics for both caregivers and persons with ADRD. This will include evaluating the design layout, user flow, and integrated content for the device's interfaces. Once usability and feasibility is established, the team will conduct a randomized trial of the AAC Plus, in collaboration with Memory Centers in the United States (R01 AG068572-01). CONCLUSION: This presentation will provide content on the process of development and human-computer interaction methodologies used to develop an evidence-based, innovative technology for people with ADRD and their caregivers. Attention will also be given for developing technologies for ADRD care that integrate person and family-centered design.