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Dysphagia Symptoms Contribute to Greater Care Partner Burden in Neurodegenerative Disease.

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  • معلومة اضافية
    • المصدر:
      Publisher: American Speech-Language-Hearing Association Country of Publication: United States NLM ID: 9114726 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1558-9110 (Electronic) Linking ISSN: 10580360 NLM ISO Abbreviation: Am J Speech Lang Pathol Subsets: MEDLINE
    • بيانات النشر:
      Original Publication: Rockville Md : American Speech-Language-Hearing Association
    • الموضوع:
      Amyotrophic Lateral Sclerosis*/psychology ; Caregiver Burden*/psychology ; Caregivers*/psychology ; Cost of Illness* ; Deglutition Disorders*/psychology ; Deglutition Disorders*/etiology ; Deglutition Disorders*/diagnosis ; Deglutition Disorders*/physiopathology ; Neurodegenerative Diseases*/psychology ; Neurodegenerative Diseases*/complications ; Parkinson Disease*/psychology; Aged ; Female ; Humans ; Male ; Middle Aged ; Canada ; New Zealand ; Severity of Illness Index ; United States
    • نبذة مختصرة :
      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: https://doi.org/10.23641/asha.28843055.
    • الموضوع:
      Date Created: 20250505 Date Completed: 20250710 Latest Revision: 20250714
    • الموضوع:
      20250715
    • الرقم المعرف:
      10.1044/2025_AJSLP-24-00529
    • الرقم المعرف:
      40324158