Dysphagia and care partner burden (Tabor Gray et al., 2025)
Purpose: Providing care for family members with neurodegenerative diseases entails significant physical and psychosocial costs, increasing caregiver burden. Limited research exists on the factors contributing to dysphagia-related burden, particularly across disease trajectories. This study aimed to (a) determine if dysphagia-related burden predicts general caregiver burden, (b) identify predictors of dysphagia-related burden, and (c) examine relationships between dysphagia severity, disease severity, and dysphagia-related burden.
Method: Care partners (N = 211; 80% female; Mage = 60 ± 14 years) from clinics in Canada, New Zealand, and the United States participated. Care recipients included those with amyotrophic lateral sclerosis (ALS; n = 48), dementia (n = 110), and Parkinson’s disease (PD; n = 53). General burden was measured using the Zarit Burden Interview, while dysphagia-related burden was assessed via the Caregiver Assessment of Reported Experiences with Swallowing Difficulties. Multiple regression analyses examined predictors of general and dysphagia-related burden and their relationships to dysphagia and disease severity.
Results: Higher general burden was associated with female caregivers (β = −.19, p = .05), higher education (β = .16, p = .03), caring for someone with dementia (β = .36, p = .01), and greater dysphagia-related burden (β = .33, p = .01). Predictors of dysphagia-related burden included working caregivers (β = .15, p = .01), increased dysphagia symptoms (β = .77, p < .01), and caring for individuals with ALS or dementia (vs. PD; β = −.16, p = .02). Dysphagia burden varied by disease severity and diet tolerance (p < .01).
Conclusions: Managing dysphagia independently contributes to caregiver burden, potentially increasing burnout and nonadherence to clinical recommendations. Early, proactive inquiry about dysphagia-related care partner burden and provision of support to minimize burden should be considered early in disease management.
Supplemental Material S1. Descriptive statistics and correlation matrix for study variables.
Tabor Gray, L., Shune, S., Perry, S., Kosty, D., & Namasivayam-MacDonald, A. (2025). Dysphagia symptoms contribute to greater care partner burden in neurodegenerative disease. American Journal of Speech-Language Pathology. Advance online publication. https://doi.org/10.1044/2025_AJSLP-24-00529
Funding
This work was supported by the Office of the Vice President for Research and Innovation at the University of Oregon (awarded to Shune), the Canadian Institutes of Health Research (ASR-176674, awarded to Namasivayam-MacDonald), the Alzheimer’s Society of Canada Research Program (awarded to Namasivayam-MacDonald), the Canada Foundation for Innovation (42113, awarded to Namasivayam-MacDonald), and the Ontario Research Fund (awarded to Namasivayam-MacDonald).
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