Validation of the Caregiver Analysis of Reported Experiences with Swallowing Disorders (CARES) Screening Tool for Neurodegenerative Disease

Abstract

Purpose: Swallowing difficulties have a substantial impact on the burden expe­rienced by care partners of individuals with neurodegenerative disease. Given this, there is a clear need to easily identify and quantify the unique aspects of swallowing-related burden. The purpose of this study was to establish the valid­ity and reliability of the Caregiver Analysis of Reported Experiences with Swal­lowing Disorders (CARES) screening tool in care partners of individuals with neurodegenerative disease. Method: Survey data were collected from an international sample of 212 indi­viduals caring for family members with amyotrophic lateral sclerosis (n= 49), dementia (n= 110), or Parkinson’s disease (n= 53). Respondents completed the CARES, Eating Assessment Tool-10, International Dysphagia Diet Standardi­sation Initiative–Functional Diet Scale, and Zarit Burden Interview. Reliability and validity of the CARES were evaluated via internal consistency alpha coefficients, Spearman’s rho correlations, and logistic regression analyses with receiver operating characteristic (ROC) curves. Results: CARES scores demonstrated excellent internal consistency (α = .90–.95) and high test–retest reliability (r = .86–.91). The CARES was found to be valid, as increased swallowing-related burden was associated with increased severity of swallowing difficulties (r = .79 to .84), diet restrictiveness (r = -.50 to -.54), and general caregiver burden (r = .36 to .40). The CARES had excellent discrimination between care partners with and without self-reported swallowing- related burden, with a score of ≥ 4 suggesting a heightened risk of experiencing this burden. Conclusions: Results establish the CARES as a valid and reliable screening tool that can detect burden related to swallowing difficulties among care partners of individuals living with neurodegenerative disease (score ≥ 4). Clinical implemen­tation of the CARES requires the concerted efforts of the larger multidisciplinary team who can collaboratively identify the presence of burden and target the multifaceted sources of burden that a care partner may be experiencing.