Dysphagia Symptoms Contribute to Greater Care Partner Burden in Neurodegenerative Disease

Abstract

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