Exploring loss of autonomy in Korsakoff patients: A comparative study of patient and caregiver perspectives

Abstract

Korsakoff syndrome (KS) is a disorder caused by severe thiamine deficiency, often due to chronic alcoholism, and is characterized by memory deficits, executive dysfunction and impaired social cognition. KS patients often struggle to maintain autonomy due to cognitive impairments, including diminished illness insight, which may ultimately result in care resistance and treatment nonadherence. These challenges complicate the caregiving process, as caregivers must navigate the ethical tension between respecting patient autonomy and providing the necessary care. Although caregivers frequently report challenges in maintaining this balance, it remains unclear to what extent patients themselves perceive a similar tension. This study investigated autonomy perception discrepancies between KS patients and their caregivers and explored whether working memory, cognitive functioning and illness insight contribute to these differences. Nineteen KS patients residing at Slingedael, along with their primary caregivers, participated in the study. Patients completed assessments of autonomy, working memory, cognitive functioning and illness insight. Caregivers completed the autonomy questionnaire regarding the patient. Paired-sample t-tests revealed that KS patients rated their autonomy significantly higher than caregivers, suggesting an overestimation of autonomy by patients, potentially attributable to impaired illness insight. Significant negative correlations were found between autonomy discrepancies and both general cognitive functioning and illness insight. No significant relationship was found between working memory performance and autonomy discrepancies. These findings provide insights into the perception of autonomy among KS patients relative to their caregivers, the role of cognitive functioning and illness insight in autonomy perception and contribute to daily care of KS patients.