Differences in end-of-life caregiving experiences among bereaved family members of patients who died from cancer or dementia: a nationwide mortality follow-back survey in Japan

Objectives Although informal caregivers play an essential role in end-of-life care, the caregiving burden may differ according to disease trajectory. This study aimed to compare end-of-life caregiving experiences and related difficulties between bereaved family members of patients with cancer and those with dementia. Methods We conducted a secondary analysis of a nationwide mortality follow-back survey in Japan. Adult bereaved family members who had been primarily involved in care completed an anonymous questionnaire. Eligible decedents were patients aged ≥20 years who died in 2021 from cancer, vascular or unspecified dementia or Alzheimer’s disease. Vascular or unspecified dementia and Alzheimer’s disease were classified as dementia. Weighted proportions were calculated, accounting for stratified sampling by place of death. Weighted logistic regression models estimated adjusted percentages and ORs, with cancer as the reference group. Results Valid responses were obtained from 1226 bereaved family members of patients with cancer and 2274 of patients with dementia; adult children and employed caregivers were more common among the latter. Overall caregiving burden was higher among bereaved family members of patients with dementia than among those of patients with cancer (54.3% vs 39.3%). After adjustment, financial burden was higher among caregivers of patients with dementia (OR, 2.19; 95% CI 1.70 to 2.83), whereas watching the patient’s condition deteriorate was more common among caregivers of patients with cancer (OR, 0.53; 95% CI 0.41 to 0.67). Conclusions Patterns of end-of-life caregiving burden and related difficulties differed by disease. Disease-specific assessment and support should, therefore, consider both illness trajectories and family caregiver circumstances.