An Investigation of the Information Sought by Caregivers of Alzheimer's Patients on Online Peer Support Groups

Abstract

Caregivers of Alzheimer's patients find respite in online communities for solutions and emotional support. This study aims to understand the characteristics of information caregivers of Alzheimer's patients are searching for and the kind of support they receive through Internet-based peer support communities. Using a Web crawler written in Python Web programming language, we retrieved publicly available 2,500 random posts and their respective solutions from April 2012 to October 2016 on the solutions category of the Caregiver's Forum on ALZConnected.org . A content analysis was conducted on these randomly selected posts and 4,219 responses to those posts based on a classification system were derived from initial analyses of 750 posts and related responses. The results showed most posts (26%) related to queries about Alzheimer's symptoms, and the highest percentage of responses (45.56%) pertained to caregiver well-being. The LIWC analyses generated an average tone rating of 27.27 for the posts, implying a negative tone and 65.17 for their responses, implying a slightly positive tone. The ALZConnected.org Web site has the potential of being an emotionally supportive tool for caregivers; however, a more user-friendly interface is required to accommodate the needs of most caregivers and their technological skills. Solutions offered on the peer support groups are often subjective opinions of other caregivers and should not be considered professional or comprehensive; further research on educating caregivers using online forums is necessary.

Keywords: Alzheimer's disease; caregiver needs analysis; content analysis; dementia; online peer support groups.