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. 2024 Sep 3;7(9):e2435018.
doi: 10.1001/jamanetworkopen.2024.35018.

Alzheimer Dementia Among Individuals With Down Syndrome

Eric Rubenstein  1 , Salina Tewolde  1 , Amy Michals  1 , Jennifer Weuve  1 , Juan Fortea  2 , Matthew P Fox  1 , Marcia Pescador Jimenez  1 , Ashley Scott  1 , Yorghos Tripodis  1 , Brian G Skotko  3
Affiliations

Alzheimer Dementia Among Individuals With Down Syndrome

Eric Rubenstein et al. JAMA Netw Open. .

Abstract

Importance: With the advancement in administrative data as a research tool and the reliance on public health insurance for individuals with Down syndrome, population-level trends in Alzheimer dementia in this population are beginning to be understood.

Objective: To comprehensively describe the epidemiology of Alzheimer dementia in adults with Down syndrome in a full US Medicare and Medicaid sample.

Design, setting, and participants: This cohort study included 132 720 adults aged 18 years or older with Medicaid and/or Medicare claims data with an International Statistical Classification of Diseases and Related Health Problems code for Down syndrome. Data were collected from January 1, 2011, to December 31, 2019, and analyzed from August 2023 to May 2024.

Main outcomes and measures: The main outcome was prevalence of Alzheimer dementia in each calendar year and during the 9-year period. Alzheimer dementia incidence rates by calendar year and age and stratified for race or ethnicity as well as time to death after Alzheimer dementia diagnosis were also assessed.

Results: There were 132 720 unique adults with Down syndrome from 2011 to 2019: 79 578 (53.2%) were male, 17 090 (11.7%) were non-Hispanic Black, 20 777 (15.7%) were Hispanic, 101 120 (68.8%) were non-Hispanic White, and 47 692 (23.3%) had ever had an Alzheimer dementia diagnosis. Incidence was 22.4 cases per 1000 person-years. The probability of an incident Alzheimer dementia diagnosis over 8 years was 0.63 (95% CI, 0.62-0.64) for those entering the study between ages 55 to 64 years. Mean (SD) age at incident diagnosis was 54.5 (7.4) years and median (IQR) age was 54.6 (9.3) years. Mean (SD) age at death among those with Alzheimer dementia was 59.2 (6.9) years (median [IQR], 59.0 [8.0] years). The mean (SD) age at onset for the Hispanic group was 54.2 (9.2) years, 52.4 (7.8) years for the American Indian or Alaska Native group, and 52.8 (8.2) years for the mixed race groups compared with 55.0 (7.8) years for the White non-Hispanic group. For age at death, there were no differences by sex. The mean (SD) age at death was later for the White non-Hispanic group (59.3 [6.8] years) compared with the Hispanic group (58.5 [7.8] years), Native American group (57.8 [7.1] years), and mixed race group (58.2 [7.0] years).

Conclusions and relevance: In this cohort study of adults with Down syndrome who were enrolled in Medicaid and Medicare, Alzheimer dementia occurred at high rates. Consistency with clinical studies of dementia in Down syndrome supports the use of administrative data in Down syndrome-Alzheimer dementia research.

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Conflict of interest statement

Conflict of Interest Disclosures: Dr Weuve reported receiving personal fees from Alzheimer's Association outside the submitted work. Dr Fortea reported receiving grants from Fondo de Investigaciones Sanitario, Instituto de Salud Carlos III, Generalitat de Catalunya, Fundació Tatiana Pérez de Guzmán el Bueno,Alzheimer´s Association, Brightfocus, Horizon 2020 during the conduct of the study and receiving personal fees from Lundbeck, Roche, AC Immune, Esteve, Biogen, Life Molecular Imaging, Laboratorios Carnot, Adamed, Lilly, Alzheon, Eisai, Zambón, Ionis, and Perha; and had a patent pending for markers of synopatopathy outside the submitted work. Dr Tripodis reported receiving personal fees from the American Medical Association outside the submitted work. Dr Skotko reported receiving grants from AC Immune and LuMind IDSC Down Syndrome Foundation; receiving personal fees from Gerson Lehrman Group, Massachusetts Down Syndrome Congress, National Down Syndrome Society, National Down Syndrome Congress, Woodbine House, and expert legal witness legal cases involving Down syndrome; and serving in a nonpaid capacity on the Honorary Board of Directors for the Massachusetts Down Syndrome Congress and the Professional Advisory Committee for the National Center for Prenatal and Postnatal Down Syndrome Resources outside the submitted work. No other disclosures were reported.

Figures

Figure 1.
Figure 1.. Prevalence of Alzheimer Dementia among People with Down Syndrome enrolled in Medicaid and/or Medicare, 2011-2019
Cells with values less than 10 are suppressed.
Figure 2.
Figure 2.. Kaplan-Meier Curves for Years to Incident Alzheimer Dementia Diagnosis in Medicaid and Medicare Enrolled Adults With Down Syndrome
Cells with values less than 10 are suppressed.
Figure 3.
Figure 3.. Age at Alzheimer Diagnosis and Death With Alzheimer Dementia in Medicaid and Medicare Enrolled Adults With Down Syndrome, 2011-2019
Figure 4.
Figure 4.. Kaplan-Meier Curves for Time From Alzheimer Dementia Diagnosis to Death for Adults With Down Syndrome
Cells with values less than 10 are suppressed.
See this image and copyright information in PMC

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