Advance Planning for Technology Use in Dementia Care: Development, Design, and Feasibility of a Novel Self-administered Decision-Making Tool

Abstract

Background Monitoring technologies are used to collect a range of information, such as one’s location out of the home or movement within the home, and transmit that information to caregivers to support aging in place. Their surveilling nature, however, poses ethical dilemmas and can be experienced as intrusive to people living with Alzheimer disease (AD) and AD-related dementias. These challenges are compounded when older adults are not engaged in decision-making about how they are monitored. Dissemination of these technologies is outpacing our understanding of how to communicate their functions, risks, and benefits to families and older adults. To date, there are no tools to help families understand the functions of monitoring technologies or guide them in balancing their perceived need for ongoing surveillance and the older adult’s dignity and wishes. Objective We designed, developed, and piloted a communication and education tool in the form of a web application called Let’s Talk Tech to support family decision-making about diverse technologies used in dementia home care. The knowledge base about how to design online interventions for people living with mild dementia is still in development, and dyadic interventions used in dementia care remain rare. We describe the intervention’s motivation and development process, and the feasibility of using this self-administered web application intervention in a pilot sample of people living with mild AD and their family care partners. Methods We surveyed 29 mild AD dementia care dyads living together before and after they completed the web application intervention and interviewed each dyad about their experiences with it. We report postintervention measures of feasibility (recruitment, enrollment, and retention) and acceptability (satisfaction, quality, and usability). Descriptive statistics were calculated for survey items, and thematic analysis was used with interview transcripts to illuminate participants’ experiences and recommendations to improve the intervention. Results The study enrolled 33 people living with AD and their care partners, and 29 (88%) dyads completed the study (all but one were spousal dyads). Participants were asked to complete 4 technology modules, and all completed them. The majority of participants rated the tool as having the right length (>90%), having the right amount of information (>84%), being very clearly worded (>74%), and presenting information in a balanced way (>90%). Most felt the tool was easy to use and helpful, and would likely recommend it to others. Conclusions This study demonstrated that our intervention to educate and facilitate conversation and documentation of preferences is preliminarily feasible and acceptable to mild AD care dyads. Effectively involving older adults in these decisions and informing care partners of their preferences could enable families to avoid conflicts or risks associated with uninformed or disempowered use and to personalize use so both members of the dyad can experience benefits.