Digital outreach in online dementia discourse

Abstract

Introduction: The rapid online expansion of social media can decrease social isolation for both caregivers and persons with dementia (PWD) through the digital communities they create. Background: PWD and their caregivers are increasingly turning to social media to express their own concerns and offer advice to each other. Material analyzed: Multimodal methods were used to analyze three online sites – two caregiver sites and one site for PWD. The sites are StoryCall, a video archive recorded by South Carolina caregivers about caring for US veterans with dementia; Molly and Joey, a video series of Joey’s interactions with his mother Molly, who had Lewy body dementia; and Dementia Diaries, oral diaries transcribed by volunteers. Results: The topics discussed online by people who wish to advise caregivers often differ from the issues and topics that most concern or interest caregivers. Persons with dementia openly shared that they still wished to live as well as possible and wanted to be seen as real people. Implications and conclusions: Through social media, PWD remind themselves and others that they are more than their condition; similarly, caregivers of PWD educate themselves and others through sharing experiences and asking questions.