Reporting of Dementia on Death Certificates: A Community Study

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Abstract
OBJECTIVE: To determine the extent to which conditions suggesting dementia are reported on death certificates of older adults and to identify the factors associated with reporting of dementia. DESIGN: A prospective epidemiological study in which community‐dwelling subjects with and without dementia were identified and followed until death, after which their death certificates were examined. POPULATION: A total of 527 individuals who died during 8 years of follow‐up of a population‐based cohort of 1422 persons aged 65 and older at study entry. MEASUREMENTS: Demographic; study diagnoses, including Clinical Dementia Rating (CDR) Scale stages and diagnoses of Probable and Possible Alzheimer's disease (AD) by NINCDS‐ADRDA criteria; disorders listed on death certificates as immediate, underlying, or contributory causes of death. RESULTS: Of 172 deceased subjects with study diagnoses of dementia, 30.2% had CDR =. 5 and 69.8% had CDR ≥ 1. Of 168 subjects in which dementia subtype could be diagnosed, Probable AD was diagnosed in 31.0% and Possible AD in 38.7%. On their death certificates, conditions indicating or suggesting dementia were reported in 23.8% of dementias overall; in 1.9% of those with CDR =. 5 and 33.3% of those with CDR ≥ 1; in 36.5% of those with Probable AD and 21.5% of those with Possible AD. In a multiple logistic regression model, variables associated independently with the reporting of dementia in demented individuals were: higher CDR stage of dementia (odds ratio (OR) 22.6; 95% confidence interval (CI), 2.9–174.7); likely etiology of dementia, Probable AD (OR = 3.5; CI, 1.1–10.6); and place of death, long‐term care institution (OR = 3.8; 95% CI, 1.6‐ 9.0). CONCLUSIONS: Although Alzheimer's disease is widely regarded as a leading cause of death, dementias are reported on the death certificates of only a quarter of demented individuals in the population at large. Reporting is more likely in those with more advanced dementia, with Probable Alzheimer's disease, and those who die in long‐term care institutions.