Dysphagia and care partner burden (Tabor Gray et al., 2025)

<b>Purpose:</b> 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.<b>Method:</b> Care partners (<i>N</i> = 211; 80% female; <i>M</i>_age = 60 ± 14 years) from clinics in Canada, New Zealand, and the United States participated. Care recipients included those with amyotrophic lateral sclerosis (ALS; <i>n</i> = 48), dementia (<i>n</i> = 110), and Parkinson’s disease (PD; <i>n</i> = 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.<b>Results:</b> Higher general burden was associated with female caregivers (β = −.19,<i> p</i> = .05), higher education (β = .16, <i>p</i> = .03), caring for someone with dementia (β = .36, <i>p</i> = .01), and greater dysphagia-related burden (β = .33, <i>p</i> = .01). Predictors of dysphagia-related burden included working caregivers (β = .15, <i>p</i> = .01), increased dysphagia symptoms (β = .77, <i>p</i> &lt; .01), and caring for individuals with ALS or dementia (vs. PD; β = −.16, <i>p</i> = .02). Dysphagia burden varied by disease severity and diet tolerance (<i>p</i> &lt; .01).<b>Conclusions: </b>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.<b>Supplemental Material S1.</b> Descriptive statistics and correlation matrix for study variables.Tabor Gray, L., Shune, S., Perry, S., Kosty, D., &amp; Namasivayam-MacDonald, A. (2025). Dysphagia symptoms contribute to greater care partner burden in neurodegenerative disease. <i>American Journal of Speech-Language Pathology</i>, <i>34</i>(4), 2053–2061. https://doi.org/10.1044/2025_AJSLP-24-00529