ABSTRACT
Social media can serve as a platform to disclose personal health information, including sharing the diagnosis of a stigmatised condition such as dementia. This chapter presents findings from an internet-mediated mixed-methods survey study aimed at exploring social media use and disclosure of the diagnosis or care status in people with dementia and family caregivers. We describe social media patterns and intended purpose of use for people with dementia and family caregivers. A total of 143 people with dementia (aged 44–95 years) and 322 family caregivers (aged 20–86 years) took part in this study. Among these survey respondents, 77 people with dementia (54%) and 254 family caregivers (79%) reported using social media, with Facebook being the most popular platform. Of those who used social media, 37 people with dementia (48%) and 121 caregivers (48%) disclosed the diagnosis online. Analysis of qualitative data indicates that social media gives people living with dementia a voice to share their journey with dementia, participate in advocacy and awareness activities, and seek and provide peer support.
