Improving End-of-Life Care for People with Dementia

Strategic Insights -

Research has shown that the quality of end-of-life (EOL) care for people with dementia has improved in the Netherlands over the past 18 years. According to a study published in the Journal of the American Medical Directors Association, family ratings of EOL care increased significantly, with an estimated 34.4 points by 2024. However, the quality of dying diverged, with two subscales changing in opposite directions.

Key Takeaways:

  • Family ratings of quality of end-of-life care increased significantly over the past 18 years, with an estimated 34.4 points by 2024.
  • The quality of dying diverged, with a significant decline in the well-being subscale and an increase in the dying symptoms subscale.
  • The study found that family-perceived quality of EOL care for people with dementia has improved, but the quality of dying remains a concern.
  • Two subscales of the EOLD-CAD, "Physical distress" and "Emotional distress," remained unchanged over the study period.
  • The study highlights the need for further research into the well-being and expectations of family members of people with dementia.

Statistics:

  • Family ratings of quality of end-of-life care increased by 0.117 points per year (CI, 0.042 to 0.192) over the past 18 years.
  • The estimated score for quality of EOL care by 2024 is 34.4 points.
  • The dying symptoms subscale increased by 0.038 points per year (CI, 0.006 to 0.071).
  • The well-being subscale declined by 0.033 points per year (CI, -0.062 to -0.003).

Sources:

  • Family-Perceived Quality of End-of-Life Care and Quality of Dying Among Dutch Nursing Home Residents With Dementia: 2005-2024 Trends. Journal of the American Medical Directors Association, 2025:105888.
  • Naomi Schotvanger, Dept. of Public Health and Primary Care, Leiden University Medical Center, Leiden, Netherlands.