Reporting Dementia on the Death Certificates of Nursing Home Residents Dying With End-Stage Dementia

To the Editor: In 2004, the National Center for Health Statistics (NCHS) ranked Alzheimer disease as the fifth leading cause of death among US residents older than 65 years, an increase from prior years. 1 NCHS data are derived from death certificates.Retrospective studies of patients who died at various stages of dementia suggest this condition is under-reported on death certificates.2,3 We prospectively observed a cohort of nursing home residents who had been diagnosed with end-stage dementia to describe which conditions were documented on their death certificates.Methods.Data were collected between 2003 and 2007 from the Choices, Attitudes, and Strategies for Care of Advanced Dementia at the End-of-Life study, a prospective study of 323 residents of 22 Boston-area nursing homes with advanced dementia, each followed up for up to 18 months.4 Eligibility criteria included age older than 60 years and advanced dementia (based on physician documentation of dementia in chart and Global Deterioration Scale stage 7 determined by a nurse).5 The Hebrew SeniorLife institutional review board approved this study.Written consent was provided by participants' health care proxies.Descriptive data included age, sex, race (reported by proxies using predefined categories), dementia type (Alzheimer, vascular, or other, from medical records), nursing home length of stay, living in a dementia special care unit, location of death, and functional status at study entry (from nurses; Bedford Alzheimer Nursing Severity Subscale 6 ).Descriptive variables, including race, were ascertained to allow for comparability with other samples.