Development and Co‐Design of a Digital Intervention for People Affected by Dementia who are Fearful of Disclosing the Diagnosis to Their Social Networks

Abstract

Background: Receiving a diagnosis of dementia can affect all aspects of an individual's life, including their sense of identity. As a consequence, some people with dementia may socially withdraw due to stigma, embarrassment or fear of what might happen if other people were to find out about the diagnosis. The "Who to tell, how and when" intervention, a group-based face-to-face intervention, has been developed for people affected by dementia who are fearful of disclosing the diagnosis to others. This study aims to adapt the existing intervention for online delivery, in light of the ongoing COVID-19 pandemic.Methods: A co-created, user-centred design in three phases is applied. In phase 1, focus groups conducted with people with dementia and informal caregivers will inform the platform, features and adaptation of pre-existing material. Phase 2 consists of the development of the digital prototype. In phase 3, the feasibility and usability are tested with end users to inform prototype v. 2.0.