The Evolving Landscape of Dementia Caregiver Needs: A Large-Scale Analysis of Online Communities to Inform Digital Interventions.

Résumé

The paradox of abundant caregiver resources despite persistently unmet needs has been suggested to stem from awareness gaps. This study analyzed over 3,000 Reddit posts from dementia caregiver communities to investigate reported gaps in caregiver support. Emotional support emerged as the most frequent and central need, with nearly 50% of posts expressing it. It was over 13 times more likely to be both unmet and addressable by digital solutions. Despite abundant resources, only 6.6% of caregiver needs were fully met-largely due to lack of awareness rather than unavailability. Needs shifted by caregiving stage, with early stages focused on information and later stages on emotional support. Network analysis highlighted the interconnected nature of needs, reinforcing the idea that effective digital interventions must adapt over time and integrate multiple forms of support. This research provides an evidence-based framework for developing targeted interventions for the millions affected by dementia caregiving responsibilities.