Diabetes-related topics in an online forum for caregivers of individuals living with Alzheimer disease and related dementias: Qualitative inquiry

Yan Du, Kristi Paiva, Adrian Cebula, Seon Kim, Katrina Lopez, Chengdong Li, Carole White, Sahiti Myneni, Sudha Seshadri, Jing Wang

Research output: Contribution to journalArticlepeer-review

Abstract

Background: Diabetes and Alzheimer disease and related dementias (ADRD) are the seventh and sixth leading causes of death in the United States, respectively, and they coexist in many older adults. Caring for a loved one with both ADRD and diabetes is challenging and burdensome. Objective: This study aims to explore diabetes-related topics in the Alzheimer’s Association ALZConnected caregiver forum by family caregivers of persons living with ADRD. Methods: User posts on the Alzheimer’s Association ALZConnected caregiver forum were extracted. A total of 528 posts related to diabetes were included in the analysis. Of the users who generated the 528 posts, approximately 96.1% (275/286) were relatives of the care recipient with ADRD (eg, child, grandchild, spouse, sibling, or unspecified relative). Two researchers analyzed the data independently using thematic analysis. Any divergence was discussed among the research team, and an agreement was reached with a senior researcher’s input as deemed necessary. Results: Thematic analysis revealed 7 key themes. The results showed that comorbidities of ADRD were common topics of discussions among family caregivers. Diabetes management in ADRD challenged family caregivers. Family caregivers might neglect their own health care because of the caring burden, and they reported poor health outcomes and reduced quality of life. The online forum provided a platform for family caregivers to seek support in their attempts to learn more about how to manage the ADRD of their care recipients and seek support for managing their own lives as caregivers. Conclusions: The ALZConnected forum provided a platform for caregivers to seek informational and emotional support for caring for persons living with ADRD and diabetes. The overwhelming burdens with these two health conditions were apparent for both caregivers and care recipients based on discussions from the online forum. Studies are urgently needed to provide practical guidelines and interventions for diabetes management in individuals with diabetes and ADRD. Future studies to explore delivering diabetes management interventions through online communities in caregivers and their care recipients with ADRD and diabetes are warranted.

Original languageEnglish (US)
Article numbere17851
JournalJournal of Medical Internet Research
Volume22
Issue number7
DOIs
StatePublished - Jul 1 2020

Keywords

  • Alzheimer disease
  • Caregivers
  • Dementia
  • Diabetes

ASJC Scopus subject areas

  • Health Informatics

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