How do persons with advanced dementia experience the end of life?

Dementia is the third leading cause of death. The majority of persons with an advanced stage of dementia die in care facilities. Little is known about the last phase of life of persons with advanced dementia. The researchers will collect internationally comparable data on the health status, care and treatment situation, quality of life and quality of death of persons with advanced dementia.

This study will examine residents at inpatient care facilities in the Zurich area for a period of three years. It will evaluate the medical files of approximately 1 600 persons to identify factors in the course of care and treatment, complications (such as behavioural problems, falls, serious concomitant diseases) and the mortality rate. In addition, the study will survey family members of 200 residents with advanced dementia and the staff members responsible for their care on the topics of quality of life and quality of and satisfaction with treatment. Here special attention will be devoted to the dying phase of the residents and their palliative care.

The study will deliver important information on the course and especially the dying phase of dementia. This knowledge can help the persons affected, their family members, and also physicians and nursing staff to make certain decisions (such as for advance directives, or if there are complications, decisions on medical tests and hospital admissions). Further, the study will reveal how satisfied family members and nurses are with the care of persons with dementia. This will help facilities to improve the quality of their care services. The analysis of factors that contribute towards quality of life in dementia will yield important conclusions. Based on that, recommendations will be made, for family members for instance, regarding how quality of life can be better maintained into the stage of advanced dementia.

The Zurich Life And Death with Advanced Dementia Study (ZULIDAD)