JMIR Publications

ABSTRACT

Background:

Diabetes (DM) 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 ALZ Connected caregiver forums by family caregivers of persons living with ADRD.

Methods:

User posts on the Alzheimer’s Association ALZ Connected 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 necessary.

Results:

Thematic analysis revealed seven key themes: 1) Disease Linkages and Co-Morbidities, 2) ADRD or Diabetes Symptoms without Diagnosis, 3) Diabetes Management, 4) ADRD and Diabetes Complications and Progress, 5) Management Strategies for ADRD and Co-Morbidities, 6) Caregiver Social Support, and 7) Caregiver Health and Self-Care. Of these, the first five are predominantly focused on the individuals living with ADRD, and the last two focus on the caregivers. 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 ALZ Connected forum provided a platform for caregivers to seek information and emotional support for caring persons living with ADRD and diabetes. The overwhelming burden with these two conditions were apparent for both caregivers and care recipients based on discussions from the online forum, future intervention through online communities should be explored.