Implications of Public Disclosure of Personal Information in Alert Systems for People Living with Dementia who go Missing: A Qualitative Descriptive Study (Preprint)

BACKGROUND People living with dementia are at risk of getting lost and going missing due to memory loss, confusion, and disorientation. Missing 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 search and rescue efforts. However, implications of public disclosure of personal information such as name, age, sex, and physical descriptions 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. Nineteen participants including people living with dementia, care partners, and service providers were recruited from Ontario, Alberta, and British Columbia, Canada. Semi-structured interviews were used to explore participants’ perspectives on the perceived implications of the release of personal information when using Community ASAP. NVivo 12 was used to manage data and conventional content analysis conducted to identify key themes of the implications of public disclosure of personal information in Community ASAP. RESULTS Participants were 10 females and 9 males. Three were people living with dementia, five were care partners, four were first responders, and seven were service providers. Four 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 for stigmatization are perceived impacts of disclosure of personal information in alert systems.