Experiences in Alzheimer's Disease: What Do Stakeholders Post on the Internet?

Alzheimer's disease (AD) is a neurodegenerative condition that is chronic, progressive and terminal across an interval of approximately five to ten years from the time of diagnosis. Disease management in AD and other illnesses has been conceptualized in a number of ways, including the Health Co-Inquiry approach (a cooperative endeavor that activates stakeholders, regards all stakeholder views, uses evidence-based practice, and strives for integrated care). With growth of Internet use, Health Co-Inquiry may occur online as stakeholders in chronic disease management search for and give information and support. The current study is a first look at the online posts of all AD stakeholders. Our goal is to shed light on their experiences by characterizing the themes in their posts. A Bifurcated Method was used with quantitization of information through a web-crawling program in order to corroborate or refute the findings from an inductive, thematic (qualitative) analysis. Results indicate that AD stakeholders utilize the Internet for: information, assistance, emotional support or relief, and advice about decision-making and behaviour challenges. Persons with AD posted little compared to caregivers and were prone to report subjective cognitive impairment (SCI) and ask for help regarding diagnosis. Caregivers were apt to divulge personal stories, ask whether they should deceive a person with AD, and request information about coping or note that posting online was a coping mechanism. Providers', agencies' and companies' posts were likely to give information and offer technical advice, answer specific caregiver questions, and offer paid services/clinical trials. As a first study of all AD stakeholder online narratives, data indicate that more than half of sites and posts are dedicated to the concerns of caregivers and persons with AD, indicating that they are engaging in some aspects of Health Co-Inquiry online.