Long-term survival, place of death, and death certification in clinically diagnosed pre-senile dementia in northern England - Follow-up after 8-12 years

Background Information on survival and cause of death in pre-senile dementi a is scarce and the organisation of services controversial. Aims To study survival, place of death and death certification in pre-senil e dementia. Method Patients aged 45-64 were identified from hospital and community sour ces in the Northern health region (1985-89) and classified as having presen ile dementia of Alzheimer type (PDAT) or pre-senile vascular dementia (PVD) by applying an algorithm to case notes. Deaths were ascertained from the N ational Health Service Central Registry (NHSCR) to 31 December 1998. Surviv al analysis was performed using the SPSS/PC program, and expected survival calculated from life tables. Results Median survival time from diagnosis was 6.08 years and did not diff er significantly in PDAT and PVD, or by age or gender; 19.3% of deaths occu rred at home, 24.5% in nursing or residential homes and 56.3% in hospital; 72.4% of the death certificates mentioned dementia or Alzheimer's disease; 15.4% were still alive. Conclusions Pre-senile dementia has a variable but usually chronic course, requiring appropriate planning and services. Declaration of interest Research grants were provided by the Northern Regio n Locally Organised Research Scheme and by the Medical Research Council.