NIH-funded study highlights need for research on aging Down syndrome population
A study of Wisconsin Medicaid enrollees with Down syndrome has found that more than half of those ages 55 and older have filed at least three claims for dementia and nearly a third have filed at least three claims for Alzheimer’s disease. The analysis was funded by the National Institutes of Health and the Agency for Health Care Research and Quality. It appears in JAMA Neurology.
People with Down syndrome are at higher risk for dementia as they age. The study authors noted that nearly all adults with Down syndrome develop neurological changes by age 40, but symptoms may not appear for decades. The authors added that population studies are needed to identify when symptoms begin so that families and health care systems can plan care for people with Down syndrome as they age.
In the current study, researchers led by Eric Rubenstein, Ph.D., and colleagues at the University of Wisconsin-Madison analyzed claims records by 2,968 Wisconsin Medicaid enrollees with Down syndrome from 2008 to 2018. Among those ages 40 to 54, 18.8% (190 of 1013) had filed dementia claims. There was a 40% chance that a person with Down syndrome age 40 to 54 years old would file a dementia claim over the next 11 years; there was a 67% chance that a person with Down syndrome age 55 or older would file such a claim. Among men and women with Down syndrome younger than 40, the likelihood of dementia was roughly equal, but from ages 40 to 54, dementia was 23% more likely in women.
Because eligibility requirements for people with Down syndrome are similar among Medicaid programs, other states may likely have a comparable proportion of claims for dementia and Alzheimer’s disease in this population.
NIH funding for the study was provided by the Eunice Kennedy Shriver National Institute of Child Health and Human Development and the National Center for Advancing Translational Sciences.
Melissa Parisi, M.D., Ph.D., chief of the NICHD Intellectual and Developmental Disabilities Branch, is available for comment.
Rubenstein, E. Research Letter: Epidemiology of dementia and Alzheimer’s disease in individuals with Down syndrome. JAMA Neurology.2019.
About the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD): NICHD leads research and training to understand human development, improve reproductive health, enhance the lives of children and adolescents, and optimize abilities for all. For more information, visit https://www.nichd.nih.gov.
About the National Institutes of Health (NIH): NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit https://www.nih.gov.