Abstract
Backgrounddeath certification data are routinely collected in most developed countries. Coded causes of death are a readily accessible source and have the potential advantage of providing complete follow-up, but with limitations.Objectiveto investigate the reliability of using death certificates for surveillance of dementia, the time trend of recording dementia on death certificates and predictive factors of recording of dementia.Subjectsindividuals aged 65 and over in six areas across England and Wales were randomly selected for the Medical Research Council Cognitive Function and Ageing Study (CFAS) and CFAS II with mortality follow-up.Methodsprevalence of dementia recorded on death certificates were calculated by year. Reporting of dementia on death certificates compared with the study diagnosis of dementia, with sensitivity, specificity and Cohen’s κ were estimated. Multivariable logistic regression models explored the impact of potential factors on the reporting of dementia on the death certificate.Resultsthe overall unadjusted prevalence of dementia on death certificates rose from 5.3% to 25.9% over the last 26 years. Dementia reported on death certificates was poor with sensitivity 21.0% in earlier cohort CFAS, but it had increased to 45.2% in CFAS II. Dementia was more likely to be recorded on death certificates in individuals with severe dementia, or those living in an institution, yet less likely reported if individuals died in hospital.Conclusionrecording dementia on death certificate has improved significantly in the England and Wales. However, such information is still an underestimate and should be used alongside epidemiological estimations.
Highlights
Mortality outcomes are considered to be reasonably robust to measurement error [1] and are useful for many cancer and vascular outcomes
Medical Research Council Cognitive Function and Ageing Study (CFAS) is a longitudinal population-based study started from 1989, with participants aged 65 years recruited in six areas across England and Wales [12, 13]
The rise has been steady despite the ageing of the denominator up to 2008, the resetting of the denominator with the new CFAS II study in 2008
Summary
Mortality outcomes are considered to be reasonably robust to measurement error [1] and are useful for many cancer and vascular outcomes. As death certification data are routinely collected in most developed countries; coded causes of death made a readily accessible source, and the use of such data has the potential advantage of providing complete follow-up of those respondents who have given consent to track routine health records in prospective cohort studies, enable many epidemiological investigation to be carried out in a much more cost-efficient manner. Dementia is known to be associated with increased mortality, and the prevalence of dementia at death should be higher than that in life. This has been empirically demonstrated [2, 3]. Such studies are rare [5, 8,9,10] and needed for any interpretation of change over time
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