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. Method(s) 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. Result(s) Research has indicated that peer support in the disclosure decision-making process is especially important for participants. Results from phase 1 and 2, including findings from the discussions with the focus groups and options appraisals for the peer support elements of the digital intervention will be discussed. We will discuss general principles of adaptation from paper manual to digital intervention. Conclusion(s) Online access to this intervention may be especially valuable for people who wish to maintain anonymity and privacy, for example people from cultural or ethnic groups where the stigma of dementia is high. Online versions of face-to-face interventions improve overall accessibility by providing choice. Copyright © 2022 the Alzheimer's Association.