Using Crowdsourcing Internet of Things Technology to Reduce Caregiver Worry in Dementia-Related Lost Episodes: Longitudinal Observational Study

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Abstract
Background: Dementia increases the risk of individuals getting lost due to cognitive decline, impacting daily functioning and heightening caregiver worry. Traditional search methods are often time-consuming and stressful, whereas GPS-based technologies face limitations such as battery dependency. A crowdsourcing Internet of Things (IoT) technology using energy-efficient Bluetooth Low Energy (BLE) offers a potential solution to locate missing individuals with dementia more effectively by harnessing the power of the crowd and fostering a caring and inclusive community. Objective: This study aimed to evaluate the effectiveness of a BLE-based privacy-preserving crowdsourcing IoT system consisting of a BLE tag and an Android and iOS app in improving lost-related behavior and psychological well-being by facilitating searches, after-care arrangements, and reducing caregiver worry, as well as to assess its usability among caregivers of individuals with dementia in Hong Kong. Methods: A single-arm, prospective observational study was conducted from November 2020 to October 2023. Caregivers (N=1034) of individuals with dementia used a staff-assisted crowdsourcing IoT technology comprising a BLE tag, mobile app sensor, and location cloud server. Outcomes included search strategies, post–getting lost care arrangements, caregiver worry and distress (10-point scale), and usability (modified Quebec User Evaluation of Satisfaction with Assistive Technology 2.0 survey). Data were collected at 6- and 12-month follow-ups and analyzed using generalized estimating equations and linear mixed models. Results: Of the 1034 participants, 143 (13.82%) reported lost episodes, with 51 (35.7%) using BLE tags for searches. Worry about future lost episodes decreased significantly over time ( P =.008), especially among BLE tag users ( P =.04). There was an association between BLE tag use and adoption of proactive search strategies (eg, going out to search: adjusted odds ratio 2.78, 95% CI 1.33-5.82; P =.007) and preventative measures (eg, IoT devices or CCTV: adjusted odds ratio 2.92, 95% CI 1.61-5.29; P <.001). Usability satisfaction was high for design and data security, whereas approximately half of the participants (309/707, 43.7%) were satisfied with accuracy. Conclusions: The BLE crowdsourcing system may reduce caregiver worry and encourage proactive search behaviors, although accuracy depends on broader community adoption. Integration into dementia care plans could enhance safety and autonomy. Further research with a randomized controlled trial design is needed to confirm these findings.

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