CareD: Caregiver’s Experience with Cognitive Decline in Reddit Posts

With advancements in analysis of cognitive decline in electronic health records, the research community witnesses a recent surge in social media posting by caregivers and/or loved ones of people with cognitive decline. The major challenges in this area are availability of large and diverse datasets, ethics of data collection and sharing, diagnostic specificity and clinical acceptability. To this end, we construct a new dataset, CAREgivers experiences with cognitive Decline (CareD), of 1005 posts with more than 194K words and 9541 sentences, highlighting discussions on people with dementia and Alzheimer’s disease on Reddit. We discuss the changing trends of discussions on cognitive decline in social media and open challenges for natural language processing and social computing. We first identify the Reddit posts reflecting substantial information as candidate posts. We further formulate the annotation guidelines, handle perplexities to investigate the existence of experiences, self-reported articles and potential caregiver in candidate posts, resulting in the discovery of latent symptoms, firsthand information, and prospective source of longitudinal information about the patient, respectively.