Self-disclosure about dementia on social media: evidence-informed guidance
Project Overview
Individuals who engage on social media often disclose a personal dementia diagnosis or identify as a caregiver, yet little is known about the impact of that disclosure. The goal of this project is to address this gap and develop a resource to support users to navigate social media. We will first identify the motivations and impacts of self-disclosing a lived experience of dementia or being a caregiver on social media. We will then characterize the nature and quality of the responses in self-disclosure thread and trace the origins of misinformation. Methods will include collecting and analyzing social media posts (Facebook, Twitter, Reddit) and responses to these posts to identify the motivations behind disclosing experiences and the nature of the responses received (e.g., peer support, resource sharing). We will also use a custom tool that surveys posters who have self-disclosed a lived experience of dementia or being a caregiver on social media and conduct semi-structured interviews with a sample of these individuals. For the last phase of the project, we will bring together people with lived experience and experts to co-create a meaningful resource to support decisionmaking around social media use in dementia. We hope that results from this study will help people living with dementia and their caregivers make the most of online peer support and minimize their exposure to misinformation.
Principal Investigator
Julie Robillard , University of British Colombia
Partners and Donors
Alzheimer's Association