Dementia is a rapidly growing global health challenge, affecting an estimated 57 million people worldwide and placing escalating demands on individuals living with the condition and those who care for them. As needs rise, many turn to digital platforms like ALZConnected, a moderated online forum offering space for sharing, support, and connection. While its use in research is expanding, to our knowledge, no scoping review has yet examined how ALZConnected has been leveraged as a data source in dementia-related studies.
Objective:
This scoping review aimed to identify and describe published studies that used the ALZConnected forum data to explore caregiver and persons living with dementia experiences, research approaches applied, and areas of focus.
Method:
A systematic search of peer-reviewed journal articles, dissertations, and preprints published between 2011 and 2025 was conducted following Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews reporting guidelines. Eligible studies analyzed ALZConnected content, centered on dementia caregivers or persons living with dementia, and reported original research. A total of 163 records were screened, with 28 studies included.
Results:
Studies applied qualitative and computational methods to explore caregiver emotional well-being, information-seeking, systemic challenges, peer support dynamics, and technological applications. ALZConnected was also used to model sentiment, develop algorithms, and analyze caregiver communication. A smaller number of studies examined posts authored by people living with dementia.
Conclusions:
ALZConnected provides a rich, naturalistic data source for exploring dementia care discussions. Findings highlight its value for nursing research, intervention development, and care planning, particularly in under-resourced settings.
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