Wearable Devices for Assessing Function in Alzheimer's Disease: A European Public Involvement Activity About the Features and Preferences of Patients and Caregivers

Abstract 

Background 
Alzheimer’s Disease (AD) impairs the ability to carry out daily activities, reduces independence and quality  of life and increases caregiver burden. Our understanding of functional decline has traditionally relied on  reports by family and caregivers, which are subjective and vulnerable to recall bias. The Internet of Things (IoT) and wearable sensor technologies promise to provide objective, affordable and reliable means for  monitoring and understanding function. However, human factors for its acceptance are relatively  unexplored. 

Objective 
The Public Involvement (PI) activity presented in this paper aims to capture the preferences, priorities and concerns of people with AD and their caregivers for using monitoring wearables. Their feedback will drive device selection for clinical research, starting with the study of the RADAR-AD project. 

Method 
The PI activity involved the Patient Advisory Board (PAB) of the RADAR-AD project, comprised of  people with dementia across Europe and their caregivers (11 and 10 respectively). A set of four devices that  optimally represent various combinations of aspects and features from the variety of currently available  wearables (e.g. weight, size, comfort, battery life, screen types, water-resistance and metrics) was presented  and experienced hands-on. Afterwards, sets of cards were used to rate and rank devices and features and  freely discuss preferences. 

Results 
Overall, the PAB was willing to accept and incorporate devices into their daily lives. For the presented  devices, the aspects most important to them included comfort, convenience and affordability. For devices  in general, the features they prioritized were appearance/style, battery life and water resistance, followed  by price, having an emergency button and a screen with metrics. The metrics valuable to them included activity levels and heart rate, followed by respiration rate, sleep quality and distance. Some concerns were the potential complexity, forgetting to charge the device, the potential stigma and data privacy.

Conclusions
The PI activity explored the preferences, priorities and concerns of the PAB, a group of people with dementia and caregivers across Europe, regarding devices for monitoring function and decline, after a  hands-on experience and explanation. They highlighted some expected aspects, metrics and features (e.g., comfort and convenience), but also some less expected (e.g. screen with metrics).