JMIR Publications

ABSTRACT

Background:

Monitoring technologies are used to collect a range of information, such as one’s location out of the home or movement within and transmit that information to caregivers to be used to support aging in place. Their surveilling nature, however, poses ethical dilemmas and can be experienced as intrusive to people living with Alzheimer’s disease (AD) and AD-related dementias (AD/ADRD). 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-app 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. This paper describes the intervention’s motivation and development process and findings about the feasibility of using this self-administered web-app intervention for a pilot sample of people living with mild Alzheimer’s disease and their family care partners.

Methods:

We surveyed 29 mild AD dementia care dyads who live together before and after they completed the web-app intervention on their own and interviewed each dyad about their experience with it. We report post-intervention measures of feasibility: recruitment, enrollment and retention, and acceptability: satisfaction, quality and usability. Descriptive statistics were calculated on survey items and thematic analysis was used with interview transcripts to illuminate participants’ experiences and recommendations to improve the intervention.

Results:

Thirty-three people living with AD enrolled with their care partners and 29 dyads (88%) completed. All but one were spousal dyads. Participants were asked to complete all four technology modules and 100% completed them. The majority of participants rated the tool’s length as just right (>90%), with the right amount of information (>84%), very clearly worded (>74%), and presented in a balanced way (>90%). Most felt the tool was easy to use, helpful, and would be likely to recommend it to others.

Conclusions:

This study demonstrated that an 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 caregivers of their preferences could enable families to avoid conflict or risks associated with uninformed or disempowered use and to personalize use so both members of the dyad can experience their benefits.