Implications of Public Disclosure of Personal Information in a Mobile Alert App for People Living With Dementia Who Go Missing: Qualitative Descriptive Study.

Abstract

Background: People living with dementia are at risk of getting lost and going missing due to memory loss, confusion, and disorientation. Missing person incidents involving people living with dementia are increasing. Alert systems such as Community ASAP can promote community engagement in locating missing persons with dementia and aid in search and rescue efforts. However, the implications of public disclosure of personal information such as name, age, sex, and physical description within such alert systems have yet to be explored.

Objective: This study aimed to identify and discuss the implications of public disclosure of personal information in Community ASAP for people living with dementia at risk of going missing.

Methods: This study used a qualitative descriptive research design drawing from naturalistic inquiry. A total of 19 participants including people living with dementia, care partners, first responders, and service providers were recruited from Ontario, Alberta, and British Columbia, Canada. Semistructured interviews were used to explore participants' perspectives on the perceived implications of the release of personal information when using Community ASAP. NVivo (version 12) was used to manage data, and conventional content analysis was conducted to identify key themes of the implications of public disclosure of personal information in Community ASAP.

Results: In total, 10/19 (53%) of the participants were women and 9/19 (47%) were men. Of the 19 participants, 3 (16%) were people living with dementia, 5 (26%) were care partners, 4 (21%) were first responders, and 7 (37%) were service providers. In total, 4 key themes were identified as implications of public disclosure of personal information in Community ASAP: right to autonomy, safety versus privacy, informed and knowledgeable consent, and stigmatization. Participants discussed how the public disclosure of personal information in Community ASAP could undermine a person's choice not to be found and contribute to stigmatization. Participants emphasized a need to balance safety and privacy concerns. Informed and knowledgeable consent is important when using an alert system to locate missing persons with dementia.

Conclusions: Community ASAP can promote community engagement in locating missing persons with dementia. However, the public disclosure of personal information in alert systems has implications. Users' right to autonomy, a balance between safety and privacy, informed and knowledgeable consent, and risks of stigmatization are perceived impacts of disclosure of personal information in alert systems.