Early-Onset Dementia and Alzheimer's Rates Grow for Younger American Adults

Published February 27, 2020

Each year, early-onset dementia and Alzheimer’s disease affect the daily lives of a growing number of Americans under 65. As measured by the Blue Cross Blue Shield (BCBS) Health IndexSM in 2017, about 131,000 commercially insured Americans1 between the ages of 30 and 64 were diagnosed with either condition.

Dementia is a general term for cognitive decline in excess of typical aging. An adult with early-onset dementia may have trouble with memory, language and cognitive skills that can make it difficult to perform routine tasks. Early-onset Alzheimer’s disease is a form of dementia characterized by progressive brain deterioration, memory loss and an inability to independently care for oneself.2

As early-onset dementia and Alzheimer’s disease continue to affect younger Americans, it is important to understand the impact of both forms of dementia on the health of Americans and their caregivers.3

EARLY-ONSET DEMENTIA AND ALZHEIMER’S DISEASE COMBINED TRENDS

Early-onset dementia and Alzheimer’s disease affects a growing number of younger commercially insured Americans. In 2017, about 131,000 people between the ages of 30 and 64 were diagnosed with either form of dementia. Diagnosis rates increased by 200% from 2013-2017 in ages 30 to 64. The average age of someone in the commercially insured population living with either condition is 49 and women are disproportionately impacted than men. (See Exhibit 1.)

Exhibit 1: Early-onset dementia and Alzheimer’s disease combined diagnosis rates for adults ages 30 to 64

While the total number of people diagnosed is relatively small, the diagnosis rate of early-onset dementia and Alzheimer’s disease is increasing especially in younger age groups.4 (See Exhibit 2.)

Exhibit 2: Diagnosis Rates of Early-Onset Dementia and Alzheimer’s by Age, per 10,000 People (Combined Totals, 2013 vs. 2017)

People living with either form of dementia have an average Health Index of 62.5, which means they are living at just 63% of optimal health5—leading to about 11 years of healthy life lost.

Learn how the BCBS Health Index works.

PREVALENCE OF EARLY-ONSET DEMENTIA AND ALZHEIMER’S DISEASE STATE-BY-STATE

Diagnosis rates of early-onset dementia and Alzheimer’s disease are higher in the East, the South and parts of the Midwest, while western states show lower rates of diagnosis. (See Exhibit 3.)

Exhibit 3: Diagnosis Rate of Early-Onset Dementia and Alzheimer’s, by State (2013-2017)

THE YEAR BEFORE DIAGNOSIS: EARLY-ONSET DEMENTIA AND ALZHEIMER’S DISEASE

There is not a definitive test for early-onset dementia or Alzheimer’s disease, as diagnosis is primarily based on an individual’s symptoms.6 As a result, people with early-onset dementia and Alzheimer’s disease often undergo different forms of testing and treatment prior to diagnosis.

Infographic showing that of people with early-onset Alzheimer’s disease: 86% received brain imaging the year prior. 57% filled an antidepressant medication in the year prior to diagnosis. About 40% were first diagnosed with early-onset dementia, cognitive or behavioral changes in the year prior.

A FOCUS ON EARLY-ONSET ALZHEIMER’S DISEASE

Early-onset Alzheimer’s is a form of dementia and can appear in people with early onset dementia. The condition is characterized by progressive brain deterioration, memory loss and an inability to independently care for oneself. In 2017, 37,000 commercially insured Americans between the ages of 30-64 were diagnosed with early-onset Alzheimer’s. The condition has grown by 131%, increasing from 1.3 per 10,000 adults, ages 30-64, in 2013 to 3.0 in 2017. (See Exhibit 4.)

Infographic showing that over 37,000 commercially insured Americans, age 30-64, were diagnosed with early-onset Alzheimer’s in 2017—a 131% increase from 2013.

Overall diagnosis of the condition is small, but from 2013 to 2017, there were large increases in early-onset Alzheimer’s disease among people ages 30 to 54. (See Exhibit 5.)

Exhibit 5: Diagnosis Rates of Early-Onset Alzheimer’s Disease by Age, per 10,000 People (2013 vs. 2017)

Conclusion

  • In 2017, early-onset dementia and Alzheimer’s disease affected about 131,000 commercially insured Americans between the ages of 30 and 64—a three-fold increase in diagnoses over the four year period.
  • These health conditions are more common in women, as this group accounts for 58% of those diagnosed with early-onset dementia and Alzheimer’s disease combined.
  • Diagnosis rates for both conditions are rising in younger adults, with the average age of someone living with either form of dementia at 49 years old.
  • These health trends indicate a need for a focus on appropriate care and support for individuals with either form of dementia and support for their caregivers as the disease progresses.7

Methodology 

This is the 29th study of the Blue Cross Blue Shield, The Health of America Report® series, a collaboration between Blue Cross Blue Shield Association (BCBSA) and Blue Health Intelligence® (BHI®), which uses a market-leading claims database to uncover key trends and insights in healthcare affordability and access to care. Additional analysis was performed by and also includes data from The National Opinion Research Center (NORC) at the University of Chicago.

This report focuses on the diagnosis of early-onset dementia and Alzheimer’s disease among commercially insured American adults 30 to 64 years of age from 2013 to 2017. Anyone who is diagnosed with Alzheimer’s at any stage of the condition during this age range is defined as having “younger” or “early-onset” Alzheimer’s.8 The study population was identified by utilizing diagnosis codes in BCBS medical claims of more than 48 million BCBS commercially insured from 2013 to 2017. 

Diagnosis rates were calculated by taking all member months of an individual after the month of diagnosis of dementia or early-onset Alzheimer’s and dividing the months by the total member months in the data for each year through 2017. The derived rate of these conditions is then used to extrapolate to the entire commercially insured population between the ages of 30 and 64 based on government estimates. The Alzheimer’s Association estimates that there are approximately 200,000 Americans under the age of 65 living with early-onset dementia and Alzheimer’s which aligns roughly to the 131,000 estimate in this report based solely on the commercially insured population.

The numbers in this report represent a point-in-time measurement of the diagnosis of early-onset dementia and Alzheimer’s disease among commercially insured American adults 30 to 64 years of age. Therefore, much of the growth in the diagnosis of these conditions over time can be attributed to the accumulation of people who are diagnosed with the condition and remain within the commercially insurer population during the study period rather than to an actual increase in the rate of diagnosis year over year.
 

ENDNOTES 

  1. Total counts of people diagnosed with either early-onset dementia or Alzheimer’s disease were extrapolated from the study population to the commercially insured population (American receiving health insurance through their employer or in the individual market, adults 30 to 64 years old) in 2017, or 126 million people.
  2. Throughout this report, early-onset dementia and early-onset Alzheimer’s disease are defined as any person diagnosed with either condition between the ages of 30 and 64. Read for more information.
  3. Based on 2017 data from the BCBS Health Index unless otherwise specified.
  4. Due to the similar nature of these health conditions, combined population totals are more representative of the population as a whole than individual population totals for each of the two conditions detailed in this report.
  5. The BCBS Health Index assigns U.S. populations a score between 0 and 100. A score of ‘100’ represents optimal health—a population’s potential lifespan, absent of disability and increased risk of death. The higher the score, the closer a population is to achieving optimal health. The lower the score, the more a population has been adversely impacted by certain health conditions.
  6. Read more information at the National Institute on Aging.
  7. To learn more about caregiving, watch the episode of Second Opinion titled, “Alzheimer’s Disease: A Caregiver’s Journey.”
  8. To learn more, visit: https://www.alz.org