Introduction Delirium remains the most common and distressing neuropsychiatric complication in patients with advanced cancer. This study examines the experiences of caregivers of patients with delirium and their role in its management. It explores evidence for interventions that improve support for these caregivers and which help them support the patient.

Aim(s) and method(s) An integrative literature review was undertaken. Four databases were searched using the terms ‘delirium’, ‘terminal restlessness’ or ‘terminal agitation’ combined with ‘carer’ or ‘caregiver’, ‘family’ or ‘families’. Twenty five papers were included in the final review.

Results Distress is experienced by many caregivers of patients with delirium. Fear, anger, disappointment and sadness are common. However, caregivers potentially play an important role in caring for patients with delirium in (i) prevention and detection of delirium ii) acting as advocates for patients, and iii) assisting in monitoring patient symptoms. Caregivers desire more information about delirium and advice on how to behave towards patients during a delirium episode however there is little evidence for specific interventions in this regard.

Conclusion(s) Caregiver focused interventions need to be developed and evaluated to determine the type of approaches that help the caregiver support the patient, and increase support for caregivers themselves.