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

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...

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Bibliographic Details
Published in:Clinical nursing research 2023-05, Vol.32 (4), p.752-758
Main Authors: Vaughan Dickson, Victoria, Melnyk, Halia, Ferris, Rosie, Leon, Alejandra, Arcila-Mesa, Mauricio, Rapozo, Crystalinda, Chodosh, Joshua, Blaum, Caroline S.
Format: Article
Language:English
Subjects:
Aged
Alzheimer Disease - psychology
Alzheimer Disease - therapy
Alzheimer's disease
Caregiver burden
Caregivers
Caregivers - psychology
Comorbidity
Content analysis
Continuity of care
Coordination
Dementia
Diabetes
Diabetes Mellitus - therapy
Emotions
Health care industry
Humans
Older people
Patients
Perceptions
Qualitative research
Role conflict
Selfmanagement
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Summary: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.
ISSN:1054-7738
1552-3799
DOI:10.1177/10547738211067880