THE EXPERIENCES OF CAREGIVERS OF PATIENTS WITH DELIRIUM AND THEIR ROLE IN ITS MANAGEMENT IN A PALLIATIVE CARE SETTING

Abstract

Background: Delirium is a serious and distressing neuropsychiatric syndrome frequently experienced by patients and their caregivers in palliative care settings. A need exists to better understand how caregivers of patients with delirium can be supported during a delirium episode, and how they can help support the patient. Aims: To explore the experiences of caregivers of terminally ill patients with delirium; to determine the potential role of caregivers in the management of delirium at the end of life; and to identify the type of support required to improve caregiver experience and to help the caregiver support the patient. Methods: An integrative literature review was conducted. Four electronic databases were searched - PsychInfo, Medline, Cinahl and Scopus from January 2000 to July 2015 using the terms 'delirium', 'terminal restlessness', or 'agitated restlessness' combined with 'carer' or 'caregiver' or 'family' or 'families'. Thirty-three papers met the inclusion criteria and remained in the final review. Results: Reviewed papers focused on (i) caregiver experience - distress, deteriorating relationships, balancing the need to relieve suffering with desire to communicate, and helplessness versus control; ii) the caregiver role - detection and prevention, symptom monitoring, and acting as a patient advocate, and iii) caregiver support - information needs, advice on how to respond to the patient, interventions to improve caregiver outcomes, and interventions delivered by caregivers to improve patient outcomes. Conclusion: High levels of distress are experienced by caregivers of patients with delirium. Distress is heightened in palliative settings due to the potential irreversibility of delirium and uncertainty around whether the caregiverpatient relationship can be re-established before death. Caregivers can be supported and can contribute to the management of patient delirium. Intervention studies with informational, emotional and behavioural components are required to improve caregiver and patient outcomes. Reducing caregiver distress should be a goal of any future intervention.