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Four findings stand out in the 2022 data.
Among beneficiaries ages 65 and older diagnosed with dementia, 22.7 percent had a diagnosed COVID-19 infection in 2022, up from 13.6 percent in 2021. The increase coincides with the record infection waves of the Omicron variant, which began in late 2021 and continued into 2022.
The annual mortality rate among beneficiaries ages 65 and older diagnosed with dementia fell from 16.1 percent in 2021 to 15.6 percent in 2022. Mortality also declined within each case-definition category: from 20.9 to 20.4 percent among beneficiaries categorized as Highly Likely, from 13.5 to 13.1 percent among those categorized as Likely, and from 9.2 to 9.0 percent among those categorized as Possible. About two-thirds of the overall decline reflects these within-category reductions in mortality; the remainder reflects a shift in the distribution of beneficiaries toward the Possible category, which has a substantially lower mortality rate than the Highly Likely category.
Among beneficiaries ages 65 and older meeting any Dementia DataHub case definition, the share categorized as Possible increased from 31.9 percent in 2021 to 33.9 percent in 2022, while the shares categorized as Highly Likely and Likely each declined slightly. Overall prevalence of any dementia rose slightly, from 14.18 percent to 14.34 percent.
Beneficiaries ages 65 and older diagnosed with dementia experienced 1,300 emergency department visits per 1,000 beneficiaries in 2022, about two and a half times the rate of hospital discharges (510 per 1,000).
The incidence of dementia diagnosis was unchanged at 5.6 percent, 31.0 percent of diagnosed beneficiaries were hospitalized (compared to 30.6 percent in 2021), and short-stay and long-stay nursing facility use changed little. Average all-cause Medicare payments among FFS beneficiaries diagnosed with dementia rose 4.5 percent to $27,440.
Because 2022 counts are displayed as rounded values under the disclosure protection system described in the Methods section, year-over-year comparisons are approximate for small subgroups.
The Dementia DataHub analyzes Medicare Fee-for-Service (FFS) claims and Medicare Advantage encounter data to report the prevalence, incidence, and important outcomes of diagnosed dementia (including Alzheimer’s disease and related dementias) at the national, state, and county level.
At the heart of this system are case definitions that use diagnosis and drug codes observed across three years of Medicare data to identify and classify dementia cases into three mutually exclusive categories:
We additionally present two summary categories:
In 2022, across all ages, we found that approximately 8.6 million Medicare beneficiaries, representing 13.5 percent of all enrollees, had evidence of Alzheimer’s disease or related dementias based on any of the three categories. Of these beneficiaries, 5.6 million (8.7 percent of enrollees) had at least one dementia-specific diagnosis code, including 4.4 million who had two or more codes and are considered highly likely to have dementia. Among beneficiaries ages 65 and older, 14.3 percent had any evidence of dementia, with 7.6 percent categorized as highly likely and 1.8 percent as likely to have dementia, and 4.9 percent categorized as possible dementia.
Among beneficiaries ages 65 and older, the incidence of Any Dementia in 2022 was 5.6 percent, essentially unchanged from 2021. The annual mortality rate among beneficiaries meeting any Dementia DataHub case definition was 15.6 percent, a decrease of approximately 0.5 percentage points from 2021 and the second consecutive annual decline. Diagnosed COVID-19 infections increased substantially, from 13.6 percent in 2021 to 22.7 percent in 2022, coinciding with the Omicron-driven surge in infections.
In 2022, 31.0 percent of beneficiaries ages 65 and older diagnosed with dementia were hospitalized at least once, 14.2 percent had a short-stay nursing facility episode, and 9.3 percent had a long-stay nursing facility episode. Beneficiaries diagnosed with dementia experienced 510 hospital discharges and 1,300 emergency department visits per 1,000 diagnosed beneficiaries. Among FFS beneficiaries ages 65 and older diagnosed with dementia, average all-cause Medicare payments were $27,440 per person in 2022, an increase of 4.5 percent compared to 2021.
The Dementia DataHub provides data visualizations and public use files with information about the number and percentage of beneficiaries in each category that meet each case definition by demographic and geographic strata. Diagnosis and administrative claims data do not capture all people living with dementia and are less definitive than clinical ascertainment. In addition, beneficiaries categorized as Possible may or may not have dementia. Nevertheless, when applied consistently to national Medicare data, these case definitions provide a systematic way to examine geographic and demographic patterns, trends, and outcomes associated with diagnosed and potentially undiagnosed dementia.
The Dementia DataHub serves as a national statistics and data system focused on measuring the scope and outcomes of dementia in administrative data systems including Medicare. The project focuses on creating and validating case definitions to identify dementia, including Alzheimer’s disease and other related dementias, using diagnosis and drug codes in billing claims and medical encounter data. The DataHub applies these case definitions to Medicare data to analyze and report national, state, and county measures of diagnosed dementia prevalence and incidence, and mortality, COVID-19 infections, hospital and nursing facility use, and all-cause payments among people with prevalent dementia.
The Dementia DataHub is a joint effort led by NORC at the University of Chicago, with partner support from George Washington University’s Milken Institute School of Public Health and KPMG LLP. The DataHub is funded by the National Institute on Aging through Grants R01-AG-075730 and R33-AG-094611. The contents are those of the authors and do not necessarily represent the official views of, nor an endorsement by, NIA/NIH or the U.S. Government.
Dementia DataHub estimates should be considered provisional, pending revisions and adjudications of administrative data records, and possible future revisions or enhancements to the system’s dementia case definitions.
The Dementia DataHub developed case definitions based on diagnosis and prescription drug codes to identify people diagnosed with dementia. We reviewed existing case definitions and categorized them based on their frequency of inclusion in prior case definitions. Expert input was used to remove certain codes from the case definitions. We are conducting ongoing validation studies to assess the accuracy of these case definitions. Therefore, case definitions may be revised over time as new information becomes available.
We developed our case definitions by aggregating codes used by 20 different previously published algorithms and the CMS Chronic Condition Warehouse definition, sorting by frequency of inclusion in prior case definitions, reviewing individual codes with clinical experts, and organizing codes into those that are directly related to dementia, Alzheimer’s disease and other related dementias, and others that may indicate dementia but do not specifically state dementia or Alzheimer’s disease. We published the methods for developing our case definitions in JAMA Network Open.
To identify dementia cases, we applied our case definitions to 100 percent of the 2020, 2021, and 2022 Medicare fee-for-service (FFS) inpatient, outpatient, carrier, Skilled Nursing Facility (SNF), Home Health Agency (HHA), and hospice claims; Medicare Advantage (MA) inpatient, outpatient, carrier, SNF, and HHA encounter data; and Medicare Part D Prescription Drug Event (PDE) data, reflecting the three-year observation window in the case definitions. All outcomes in this report are measured in calendar year 2022.
Our estimates include any Medicare beneficiary with at least Part A (the premium-free Medicare benefit) enrollment who was alive and enrolled as of January 1, 2022. We excluded people with missing sex and invalid U.S. state or territory codes.
We applied the case definitions to included datasets using ICD-10 diagnosis codes and NDC drug codes in any position on the claim. We analyze and report outcomes by calendar year. This report presents results for beneficiaries ages 65 and older for the year 2022.
Beginning with the 2022 data year, the DataHub protects the privacy of individuals in Medicare with a certified disclosure limitation system. Counts of 1 to 10 are never displayed. Larger counts are displayed as rounded values on an escalating ladder (for example, to the nearest 10 for counts between 15 and 99 and to the nearest 500 for counts between 10,000 and 100,000), and a small number of cells carry interval codes of the form <X, meaning the true count is below X. Every released file is checked by an automated disclosure audit that verifies, across every additive relationship in the file, that no suppressed value can be recovered from the values that are published. The audit issues a certificate, distributed with the public use file, that documents the protection standard and carries a cryptographic hash allowing anyone to verify the authenticity of their copy of the data.
Because displayed counts are rounded, the counts in this report are the rounded values from the public use file, and percentages are computed from rounded counts. At the national level the effect of rounding is negligible; for the smallest subgroups, rates are approximate within the rounding intervals documented in the public use file codebook. For the same reason, year-over-year comparisons with the 2021 report, which displayed near-exact counts, are approximate for small subgroups.
All data used in this report are available for independent analysis as a public use file, and every number in this report can be reproduced from it. If you are interested in accessing the public use data, please access the data request form.
Values indicated by percentage and (count). Counts are displayed as rounded values under the disclosure scheme; percentages are computed from rounded counts. – indicates a value suppressed in the public use file.
Values indicated by percentage and (count). Counts are displayed as rounded values under the disclosure scheme; percentages are computed from rounded counts. – indicates a value suppressed in the public use file
Rate per 1,000 beneficiaries diagnosed with dementia, computed from rounded counts. – indicates a value suppressed in the public use file.
Average payments indicated in dollars. Payments are available for FFS beneficiaries only.
