Huntington ’s Disease Progression and Caregiver Burden

This study aims to assess the caregivers’ burden cross-sectionally and longitudinally and look for biological and clinical patients-related burdening factors. In total, 144 caregiver-patient pairs observed annually for up to 8 years were included in the s tudy. In all of the patients, demographic data were collected, Unified Huntingtonapos;s Disease Rating Scale (UHDRS) assessments were conducted, and disease burden (DB) was calculated when caregivers were assessed in Caregiver Burden Inventory (CBI). Caregivers’ burden measured in CBI at the first visit reached 18.7 ± 18.4 scores. Longitudinal observation showed no evidence for any discrepancy between clinical progression measured in UHDRS, nor biological progression measured in DB and the caregivers’ burden progression measured in CBI. Caregivers were burdened mostly by patients’ depen dence and a discrepancy between reality and life expectations. This study indicates factors to be addressed to reduce caregivers’ burden. Strict relation between caregivers’ burden and biological and clinical progression denies conception of overloaded with care tasks or adaptation to the burden .Eur Neurol
Source: European Neurology - Category: Neurology Source Type: research