Quality of end-of-life care among individuals with and without dementia: a Swedish registry-based study

Despite dementia being a leading cause of death and clinical guidelines recommending palliative care, substantial gaps in care quality for this population have previously been shown. This study aimed to investigate and compare the quality of end-of-life (EOL) care provided to individuals with and without dementia in different settings. In this registry-based study, patients registered in the Swedish Register of Palliative Care (SRPC) between 2011 and 2020 were cross-referenced with patients in the Swedish registry for cognitive/dementia disorders (SveDem). For each patient with dementia registered in SveDem (n = 39 712), two controls without dementia matched by year of birth and gender were selected from the SRPC (n = 79 336). Quality indicators in the SRPC were analyzed by group (dementia/controls) and by place of death, separately, using the chi-squared test. Multiple logistic regression analyses were conducted to examine the association between the quality indicators and having a diagnosis of dementia or not, overall and in different settings. Individuals with dementia were more likely to have staff or family members present at death, to receive documented decisions to shift to EOL care, have symptom assessments made the final week of life and prescription of injectables. However, they were less likely to express preferences for place of death and to be informed about EOL care transitions, especially in hospitals without specialized palliative care. In this study, individuals with dementia received higher quality EOL care in several domains compared with those without dementia. However, they were less likely to have expressed preferences for place of death. These findings highlight the need for early, proactive care planning to align care with patient preferences and avoid potentially non-beneficial actions.