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Talk Abstract: Noelannah Neiburger

Self-sovereign identity and guardianship: What does it mean for persons living with dementia and their caregivers?

This project aimed to: (1) develop a lay definition of self-sovereign identity (SSI) that is understandable to persons with dementia and their caregivers; and (2) obtain feedback from the dementia community pertaining to the use of guardianship within the context of SSI and how it can be applied specifically for those living with dementia. We conducted a two-phase study that utilized a multi-method design. To meet the first objective, the first phase consisted of concept development, which involved a search of the grey and scholarly literature and conducting interviews and focus groups with persons with dementia and their caregivers. Key elements of self-sovereign identity highlighted from participants and the literature included digital identity, decentralized authority, ownership and control, privacy and security. This was captured in a short video for knowledge translation. To meet the second objective, we conducted semi-structured interviews with persons living with dementia, caregivers, members of industry, and community organizations from Canada, United States, United Kingdom, Netherlands and Australia. Results were divided into three categories: (1) current guardianship practices; (2) potential benefits and limitations of SSI on guardianship; (3) considerations regarding guardianship and SSI. The findings from this project will be used to determine the feasibility of integrating SSI to assist in the collection of data of missing persons with dementia.