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OBJECTIVE: To investigate the last phase of dementia and the causes of death; comparing autopsy and death certificate diagnoses. DESIGN: Prospective, 11-year, longitudinal study of behavioural and psychological changes in dementia, with autopsy follow-up. SETTING: Participants with dementia, living at home with a carer. All lived in Oxfordshire, UK. PARTICIPANTS: Ninety-one people with dementia (Alzheimer's disease and/or vascular dementia) who died during the course of the study. MEASURES: At four-monthly intervals, carers were interviewed about the participants' behaviour using the Present Behavioural Examination. Participants were also assessed cognitively. Causes of death were established from death certificates and, where possible, from post-mortem examination. RESULTS: The main immediate cause of death recorded at autopsy was pneumonia (57%), followed by cardiovascular disease (16%) and pulmonary embolus (14%). This agreed with the immediate cause of death on 53% of death certificates. Pulmonary embolism and bronchopneumonia were under-reported on death certificates. Dementia was mentioned on 73% of death certificates. The dementing illness lasted for a mean of 8.5 years with 58% dying in a debilitated state associated with severe dementia. In the period before death, 35% were unable to walk, 58% were hypophagic, 73% were incontinent of urine, 21% incontinent of faeces and 76% entered an institution permanently for a mean period of 18 months. CONCLUSION: Family and professional carers of people with dementia can be given some information about prognosis to help them plan for the likely outcome of dementia.


Journal article


Int J Geriatr Psychiatry

Publication Date





969 - 974


Aged, Autopsy, Cause of Death, Death Certificates, Dementia, Disabled Persons, Disease Progression, Female, Humans, Male, Prognosis, Prospective Studies, Quality of Life