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A Scoping Review of Dementia Research Using ALZConnected Forum Data.

Mary Gemma O'Donnell1,2,3, Terry Smith2,3, Yingyan Huang1

  • 1Edson College of Nursing and Health Innovation, Arizona State University, Phoenix, AZ, USA.

Western Journal of Nursing Research
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This review explores how the ALZConnected online forum is used in dementia research. Findings show it’s a valuable data source for understanding caregiver experiences and improving dementia care strategies.

Keywords:
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Area of Science:

  • Gerontology
  • Digital Health
  • Health Informatics

Background:

  • Dementia affects 57 million globally, increasing demand on caregivers.
  • Digital platforms like ALZConnected offer support and connection for those affected by dementia.
  • Research utilizing ALZConnected data is growing, but a comprehensive review was lacking.

Purpose of the Study:

  • To identify and describe studies using ALZConnected forum data.
  • To explore caregiver and person with dementia experiences documented on the forum.
  • To analyze research approaches and focus areas within these studies.

Main Methods:

  • A scoping review following PRISMA-ScR guidelines was conducted.
  • Searched peer-reviewed articles, dissertations, and preprints (2011-2025).
  • Included 28 studies analyzing ALZConnected content on dementia care.

Main Results:

  • Studies used qualitative and computational methods to examine caregiver well-being, information needs, and support dynamics.
  • ALZConnected data was used for sentiment analysis, algorithm development, and communication analysis.
  • A subset of studies focused on posts from individuals living with dementia.

Conclusions:

  • ALZConnected serves as a rich, naturalistic data source for dementia care research.
  • Findings support its utility in nursing research, intervention design, and care planning.
  • The forum is particularly valuable for research in under-resourced settings.