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Perceptions of Treatment Burden Among Caregivers of Elders With Diabetes and Co-morbid Alzheimer’s Disease and Related Dementias: A Qualitative Study

Author

Listed:
  • Victoria Vaughan Dickson
  • Halia Melnyk
  • Rosie Ferris
  • Alejandra Leon
  • Mauricio Arcila-Mesa
  • Crystalinda Rapozo
  • Joshua Chodosh
  • Caroline S. Blaum

Abstract

Many older adults with diabetes (DM) have co-occurring Alzheimer’s Disease (AD) and AD-Related Dementias (ADRD). Complex treatment plans may impose treatment burden for caregivers responsible for day-to-day self-management. The purpose of this qualitative study was to describe caregiver perceptions of treatment burden for people with DM-AD/ADRD. Caregivers ( n  = 33) of patients with DM-AD/ADRD participated in semi-structured interviews about their caregiver role and perceptions of treatment burden of DM-AD/ADRD management. Qualitative data were analyzed using content analysis (ATLAS.ti). Caregivers reported high levels of burden related to complex treatment/self-management for patients with DM-AD/ADRD that varied day-to-day with the patient’s cognitive status. Four themes were: (1) trajectory of treatment burden; (2) navigating multiple healthcare providers/systems of care; (3) caregiver role conflict; and (4) emotional burden. Interventions to reduce caregiver treatment burden should include activating supportive services, education, and care coordination especially, if patient treatment increases in complexity over time.

Suggested Citation

  • Victoria Vaughan Dickson & Halia Melnyk & Rosie Ferris & Alejandra Leon & Mauricio Arcila-Mesa & Crystalinda Rapozo & Joshua Chodosh & Caroline S. Blaum, 2023. "Perceptions of Treatment Burden Among Caregivers of Elders With Diabetes and Co-morbid Alzheimer’s Disease and Related Dementias: A Qualitative Study," Clinical Nursing Research, , vol. 32(4), pages 752-758, May.
    • Handle: RePEc:sae:clnure:v:32:y:2023:i:4:p:752-758
    DOI: 10.1177/10547738211067880
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    References listed on IDEAS

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    1. Yingzi Zhang, 2018. "Family functioning in the context of an adult family member with illness: A concept analysis," Journal of Clinical Nursing, John Wiley & Sons, vol. 27(15-16), pages 3205-3224, August.
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