Psychological distress, health, and socio-economic factors in caregivers of terminally ill patients: a nationwide population-based cohort study

Support Care Cancer. 2016 Jul;24(7):3057-67. doi: 10.1007/s00520-016-3120-7. Epub 2016 Feb 18.


Purpose: At some point in life, most people become caregivers to a terminally ill relative. Previous studies have shown that many caregivers experience psychological distress and declining physical health, but these studies have predominantly been conducted in specialized palliative care settings. Therefore, caregiver studies with a population-based approach are needed. We aimed to describe socio-economic characteristics, situational factors, pre-loss grief symptoms, depressive symptoms, caregiver burden, and health status in a general population of caregivers to terminally ill patients.

Method: We conducted a nationwide population-based cohort study. Caregivers were systematically recruited through patients registered with drug reimbursement for terminal illness in 2012. Data on socio-economic characteristics was mainly obtained from Danish registries, whereas data on situational factors, distress, and health was measured in questionnaires.

Results: Of patients to responding caregivers (n = 3635), 89 % suffered from cancer, predominantly lung cancer (23 %). Of responding caregivers, 62 % were partners and 29 % were adult children. In total, one third of caregivers reported severe outcome, 15 % reported severe pre-loss grief symptoms, 16.1 % had moderate to severe depressive symptoms, and 12 % experienced high caregiver burden. Partners had the highest levels of pre-loss grief and depressive symptoms, while adult children reported the highest levels of caregiver burden.

Conclusions: From this cohort, which was estimated to be representative of caregivers to terminally ill relatives in the general population, we found high levels of pre-loss grief, depressive symptoms, and/or caregiver burden in one third of all caregivers. These findings call for increased focus on caregivers' need of support.

Keywords: Caregiver burden; Depression; Informal caregivers; Pre-loss grief; Socio-economic factors; Terminal illness.

MeSH terms

  • Aged
  • Caregivers / psychology*
  • Cohort Studies
  • Female
  • Health Status*
  • Humans
  • Male
  • Neoplasms / psychology*
  • Socioeconomic Factors
  • Stress, Psychological / psychology*
  • Surveys and Questionnaires
  • Terminally Ill