Delirium is a common neuropsychiatric syndrome, particularly in elderly hospitalized patients, and is associated with an increase in morbidity and mortality. Although these negative consequences are well documented, only a few studies describe the experience of delirium from the families’ perspective.

To analyze studies regarding the experience and distress caused by delirium in the families/caregivers of adult/elderly hospitalized patients.

A non-systematic review of published articles until October 2015 in the database PubMed was carried out. The keyword “Delirium” was combined with: “experience”, “distress”, “anxiety” and “family”, “carer” and “relatives”. Inclusion criteria were: standardized diagnosis of delirium, systematic/prospective assessment of distress level. Clinical cases were excluded.

Sixteen studies met the inclusion criteria for analysis. In most of them, family members (mostly younger) showed high levels of distress, even higher than health care professionals and patients. Several predictors of family distress were found, including poor functional status, psychomotor agitation, delusions, emotional lability, incoherent speech, inattention and disorientation. Higher distress was associated with long-term consequences (e.g. generalized anxiety). In the qualitative research, family members interpreted delirium as a sign of approaching death, result of pain/discomfort or an effect of medication. In addition, distress was associated with rapid and unexpected changes or unable to recognize the loved ones.

Delirium in patients was associated with significant distress in family members. These findings underline the importance of providing information and the development of appropriate supportive and psychoeducational interventions in order to help families throughout this process and reduce the associated distress. This work is supported by FCT (SFRH/BPD/103306/2014).

The authors have not supplied their declaration of competing interest.