The 'natural' endpoint of dementia: death from cachexia or dehydration following palliative care?

To investigate the causes of death in nursing home patients with dementia, and to compare causes of death in patients who survive until the final phase of dementia with those who die before reaching that phase, adjusted for potential confounders.

Observational analysis of a cohort of patients with a prospective follow-up.

Psychogeriatric nursing home 'Joachim en Anna' in Nijmegen, the Netherlands.

Eight hundred and ninety dementia patients admitted between 1980 and 1989. All patients were followed until death.

The final phase of dementia was defined as total impairment on 20 items of a functional status questionnaire. Immediate causes of death (part 1a of the Dutch death certificate) were classified by the International Classification of Health Problems in Primary Care.

The three most important reported immediate causes of death were cachexia/dehydration (35.2%), cardio-vascular disorders (20.9%) and acute pulmonary diseases (20.1%), mainly pneumonia. Cachexia/dehydration was particularly common as a cause of death of patients who survived to the final phase (53.2%); survival to the final phase of dementia was an independent predictor of cachexia/dehydration as an immediate cause of death with reference to cardiovascular disorders in multinomial regression adjusted for age at death, gender, and type of dementia.

Patients who survive to the final phase of dementia are more likely to die from cachexia or dehydration than those who die before. The findings contribute to a debate on what should be reported as the immediate cause of death in dementia including perspectives from a palliative care viewpoint.