Neuropsychiatric Symptoms and Caregiver Burden in Dementia: A Longitudinal Dyadic Cohort Study

ABSTRACT Background: Caregivers of older individuals with dementia experience substantial and enduring burden, often exacerbated by patient neuropsychiatric symptoms (NPS). Few longitudinal studies have examined how specific NPS contribute to prolonged caregiver burden. Methods: We conducted a 6-month prospective cohort study of 100 dyads of caregivers and older adults with Alzheimer’s disease, frontotemporal dementia and Lewy body dementia recruited from specialized neurology and geriatric clinics. Caregiver burden was assessed using the Zarit Burden Interview (ZBI), and NPS were measured with the neuropsychiatric inventory (NPI) and associated distress scale (NPI-D). Correlation analyses examined associations between baseline NPS and both concurrent and prolonged high caregiver burden. Results: At baseline, nearly one-third of caregivers reported moderate-to-severe burden (mean ZBI 31.4 ± 15.4), a prevalence that persisted at 6 months. Higher burden was strongly correlated with total NPI and NPI-D scores ( p < 0.001). Specific symptoms – including delusions, hallucinations, agitation, anxiety, disinhibition, depression, sleep disorders and irritability – were consistently associated with greater burden. Depression, anxiety, disinhibition and sleep disturbances predicted prolonged high burden over 6 months. Sex-specific patterns emerged: psychotic symptoms and sleep disorders were more strongly associated with burden in female caregivers, whereas depression and irritability were key drivers for male caregivers. Conclusion: Caregiver burden in dementia is both prevalent and persistent, with NPS emerging as major correlates and predictors. Recognition of sex-related patterns may enable earlier identification of at-risk caregivers. Interventions addressing both patient NPS and caregiver coping resources could help reduce long-term distress and improve outcomes for both caregivers and patients.