Primary malignant brain tumor patients’ cognition and their caregivers: The good, the bad, and the burden

Abstract Objective: For patients with primary malignant brain tumors, cognitive decline is incredibly common and contributes to reduced independence in daily functioning. These patients often rely on informal caregivers (e.g., family, friends) for functional support, shown to increase caregiver distress in other neurologic populations. However, few studies have investigated this relationship in neuro-oncology; thus, we explored whether neuro-oncology patients’ neurocognitive function was associated with caregiver burden. Method: Neuro-oncology patients completed neuropsychological tests assessing commonly affected cognitive domains, and caregivers completed a validated measure of caregiver burden including impact on daily schedule, self-esteem, and availability of family support. Dyads were selected from a previous randomized-controlled trial (SmartCare) for distressed neuro-oncology caregivers. Independent samples t -tests and hierarchical regressions were used to evaluate the relationship between patients’ neurocognitive performance and caregiver burden. Results: Seventy-eight neuro-oncology dyads were included for analyses (Patients: M age = 53.4, 65.4% male, Caregivers: M age = 52.5, 71.8% female, 84.6% spouse). Caregiver schedule burden, but not self-esteem or family support, was significantly higher for caregivers of patients with deficits in verbal memory and divided attention ( p .05). Conclusions: Patients’ verbal memory performance appears to be indicative of cognitive changes that contribute to increased caregiver demands on their daily schedule and time burden. Maximizing patients’ functioning through leveraging their continued cognitive strengths and implementing individualized cognitive rehabilitation programs may improve caregiver burden.