Perceptions of Treatment Burden Among Caregivers of Elders With Diabetes and Co-morbid Alzheimer's Disease and Related Dementias: A Qualitative Study. (May 2023)

• Record Type: Journal Article
• Authors: Vaughan Dickson, Victoria; Melnyk, Halia; Ferris, Rosie; Leon, Alejandra; Arcila-Mesa, Mauricio; Rapozo, Crystalinda; Chodosh, Joshua; Blaum, Caroline S.
• Is Part Of: Clinical nursing research. Volume 32:Number 4(2023)
• Page Start: 752
• Page End: 758
• Publication Date: 2023-05
• Subjects: dementia -- diabetes -- caregiving -- aging -- qualitative research; Nursing -- Research -- Periodicals; Nursing -- Periodicals; Clinical medicine -- Research -- Periodicals; 610.73
• DOI: 10.1177/10547738211067880
• Languages: English
• ISSNs: 1054-7738

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.