The needs of informal caregivers of people experiencing dementia as identified on social media.

Abstract

Objectives: The aims of this study were to 1) categorize and quantify the most frequent concerns of informal caregivers, 2) conduct a thematic analysis on a sample of the posts, and 3) examine a subset of 100 post responses to determine if they are supportive and evidence- based.

Method: For Aims 1 and 2, we used a qualitative descriptive design using content analysis. To address Aim 3, we used a Delphi method in a subset sample of responses to posts to determine if they were supportive or not and evidence-based or not.

Results: The most frequent issues were: 1) information seeking about the problem behaviors of dementia, 2) grieving/loneliness/isolation, 3) caregiver stress/venting, 4) a need for celebration, and 5) financial/legal concerns. Seventy-three percent of the responses were supportive and accurate.

Conclusion: These findings highlight multifaceted concerns and areas of support needed for dementia caregivers. They may help inform future strategies that can be delivered in an interactive question and answering tool that provides supportive evidence-based information to dementia caregivers.