Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Jan 16, 2020
Date Accepted: Jun 3, 2020
Diabetes Related Topics in an Online Forum for Caregivers of Individuals Living with Alzheimer’s Disease and Related Dementias: A Qualitative Inquiry
ABSTRACT
Background:
Diabetes and Alzheimer’s Disease and Related Dementias (ADRD) are the seventh and sixth leading causes of death in the United States, respectively, and co-exist 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 ALZConnected caregiver forums by family caregivers of persons living with ADRD.
Methods:
User posts on the Alzheimer’s Association ALZConnected Caregivers Forum were extracted. A total of 528 posts related to diabetes were included for analysis. Of the users who generated the 528 posts, approximately 96 % (275/286) were relatives of the care recipient with ADRD (e.g. child, grandchild, spouse, sibling, or unspecified relative). Two researchers analyzed the data independently using thematic analysis. Divergence was discussed among the research team and agreement was reached with a senior researcher’s input as deemed necessary.
Results:
Thematic analysis revealed seven key themes. Results showed that comorbidities of ADRD were common topics in the discussions of family caregivers. Diabetes management in ADRD challenged family caregivers. Family caregivers might neglect their own health care due to caring burden, and 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 ADRD of the care recipient and seek support for how to manage their own lives as caregivers.
Conclusions:
The ALZConnected forum provided a platform for caregivers to seek information and emotional support for caring persons living with ADRD and diabetes. The overwhelming burdens with these two 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 in individuals with ADRD and diabetes through online communities are warranted.
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