Removing the Shroud: Revealing Cause of Death Patterns among Adults with Down Syndrome and Alzheimer’s Disease

Abstract

Examination of cause of death patterns among disabled people is shrouded by death patterns in the general population. To remove this shroud, we focus on multiple causes of death (MCOD) comorbidity patterns between decedents with and without Down syndrome with Alzheimer’s disease or unspecified dementia. Using 2005 to 2019 U.S. MCOD data, we examined comorbidity profiles of adults with (N = 7,936) and without (N = 4,593,118) Down syndrome using the broadest International Classification of Diseases (ICD-10) “List of 113 Selected Causes of Death” (selected cause groups) of death classification scheme as well as the ICD-10 “Specific Conditions” (specific causes). Comparison of these classification schemes revealed that the use of selected cause groups veiled comorbidities common among adults with Down syndrome—choking-related deaths, seizures and hypothyroidism. Results from this study underscore the necessity to change cause of death classifications schemes and/or the reporting of this information to account for differences and to mitigate data inequities.