Life Expectancy, Aging, and the Down Syndrome Population

Key Points

• The life expectancy of people with Down syndrome is between 50 and 60 years of age. 

• The life expectancy of people with Down syndrome increased dramatically during the 20th century but appears to be leveling off. Alzheimer's disease, which occurs at a higher rate and at a younger age in people with Down syndrome, seems to be the main cause.

• The population of people with Down syndrome in the United States has continued to increase.

 

Life expectancy

Today, people with Down syndrome are living longer and healthier than any other time in the past. In 1900, the life expectancy of people with Down syndrome was 9 years. By 1984, the life expectancy had increased to 28 years. Since then, the life expectancy of people with Down syndrome has increased to about 60 years in white individuals in the United States (1-4).

The increase in life expectancy is attributed largely to advances in cardiac surgery and in general health management (1). Approximately 50% of infants with Down syndrome are born with congenital heart disease, and the accessibility of surgical correction has greatly reduced deaths related to congenital heart disease (5-6).

While there are some racial differences in life expectancy of people with Down syndrome, the differences appear to be decreasing. In 1950, the life expectancy of non-Hispanic Blacks was 22 years (mean) and 4 years (median). In 2010, the life expectancy of non-Hispanic Blacks was 50 (mean) and 57 (median). The life expectancy of non-Hispanic whites was 54 (mean) and 58 (median) in 2010 (7).

We had the privilege to meet one of the oldest well-documented people with Down syndrome, a woman with Down syndrome who died at age 82 years. While living into the 70s is still not common for people with Down syndrome, there are more reports of individuals with Down syndrome living that long (8-9).

 

Aging and Alzheimer's disease

Premature aging

There are premature aging issues in people with Down syndrome. As a rough guide, people with Down syndrome often seem to be younger physically than their chronological age until about age 35. They may look younger and are less likely to have some health conditions sometimes seen in people without Down syndrome. 

However, after age 35, many people with Down syndrome seem to age more rapidly. As their age goes beyond 35 years, we often begin to think of individuals as older than their chronological age when it comes to physical health and medical problems. While there are still some conditions, like high blood pressure, solid tumors, and atherosclerosis, that people with Down syndrome get less frequently, this is not the case for all conditions as people with Down syndrome age. Alzheimer's disease is one condition that occurs earlier and more frequently in people with Down syndrome. On average, it occurs 20 (or more) years earlier in people with Down syndrome than those without Down syndrome.

Additionally, clinically the rate of aging seems to increase with time in many adults with Down syndrome. At 40, we might consider a person with Down syndrome to be physically 5 years older and by 60 or 65 to be perhaps 20 years older than a person without Down syndrome. That certainly varies from person to person in that aging seems to occur at different rates depending on the individual. Other health problems can contribute to varying rates of aging. This is true for adults with and without Down syndrome.

 

The effect of Alzheimer's disease on life expectancy

While the life expectancy of people with Down syndrome has increased dramatically as noted above, it does seem to be leveling off. Alzheimer’s disease seems to be the biggest factor that is preventing the continued increase in life expectancy (10). When ongoing research finds successful treatments for Alzheimer’s disease for people with Down syndrome, it is hoped and anticipated that the life expectancy of people with Down syndrome will start to increase again.

While we don't have the answer to stopping or reversing aging, there are many things we can do to improve or optimize our health as we age. Participating in regular exercise, eating a healthy diet, maintaining a healthy weight, keeping our minds stimulated, engaging in social opportunities, and optimizing our vision and hearing all likely have a positive effect on our health as we age. Our article on Reducing Risk of Getting Alzheimer's Disease provides further information on promoting healthy aging and preventing (or delaying) Alzheimer's disease. 

 

Population of people with Down syndrome

The population of people with Down syndrome increased more than four-fold in the United States from 1950 to 2010 (49,923 to 206,366) (7).  During that same period, the total population in the United States approximately doubled (151,325,798 to 308,745,538). In addition, the number of adults (age 20 and above) with Down syndrome increased by seven times during that same period (13,368 to 117,763) (11). 

Population data are available for Europe, New Zealand and Australia (12-13). In some countries, the population of individuals with Down syndrome is decreasing, and this is attributed to prenatal testing and selective pregnancy termination. However, in the United States and Australia, the population of people with Down syndrome continues to increase.

 

Resources

Aging and Down Syndrome: A Health & Well-Being Guidebook (National Down Syndrome Society)

Healthy Aging in Adults with Down Syndrome Webinar Recording

All Aging Resources

Reducing Risk of Getting Alzheimer's Disease

All Alzheimer's Disease Resources

 

References

1. Glasson EJ, Sullivan SG, Hussain R, Petterson BA, Montgomery PD, Bittles AH. The changing survival profile of people with Down's syndrome: Implications for genetic counselling. Clin Genet. 2002;62(5):390-393. doi:10.1034/j.1399-0004.2002.620506.x

2. Bittles AH, Glasson EJ. Clinical, social, and ethical implications of changing life expectancy in Down syndrome. Dev Med Child Neurol. 2004;46(4):282-286. doi:10.1111/j.1469-8749.2004.tb00483.x

3. Coppus AM, Evenhuis HM, Verberne GJ, et al. Survival in elderly persons with Down syndrome. J Am Geriatr Soc. 2008;56(12):2311-2316. doi:10.1111/j.1532-5415.2008.01999.x

4. Zhu JL, Hasle H, Correa A, et al. Survival among people with Down syndrome: A nationwide population-based study in Denmark. Genet Med. 2013;15(1):64-69. doi:10.1038/gim.2012.93 

5. Dimopoulos K, Constantine A, Clift P, et al. Cardiovascular complications of Down syndrome: Scoping review and expert consensus. Circulation. 2023;147(5):425-441. doi:10.1161/CIRCULATIONAHA.122.059706

6. Santoro SL, Steffensen EH. Congenital heart disease in Down syndrome – A review of temporal changes. J Congenit Heart Dis. 2021;5(1). doi: 10.1186/s40949-020-00055-7

7. de Graaf G, Buckley F, & Skotko BG. Estimation of the number of people with Down syndrome in the United States. Genet Med. 2017;19(4):439-477. doi: 10.1038/gim.2016.127

8. N.B. man with Down syndrome defies the odds (Global News)

9. Britain’s oldest man with Down syndrome celebrates 77th birthday (People)

10. Iulita M, Chavez D, Christensen M, et al. Association of Alzheimer's disease with life expectancy in people with Down syndrome. JAMA Netw Open. 2022;5(5);e2212910. doi: 10.1001/jamanetworkopen.2022.12910

11. United States Census Bureau. Historical Population Change Data (1910-2020). April 26, 2021. Accessed January 14, 2025. https://www.census.gov/data/tables/time-series/dec/popchange-data-text.html

12. de Graaf G, Buckley F, Skotko BG. Estimation of the number of people with Down syndrome in Europe [published correction appears in Eur J Hum Genet. 2022;30(10):1199-1200. doi: 10.1038/s41431-022-01124-8]. Eur J Hum Genet. 2021;29(3):402-410. doi:10.1038/s41431-020-00748-y

13. de Graaf G, Skladzien E, Buckley F, Skotko BG. Estimation of the number of people with Down syndrome in Australia and New Zealand. Genet Med. 2022;24(12):2568-2577. doi:10.1016/j.gim.2022.08.029

 

*Note: There are a range of statistics that are used to estimate and predict the age at which an individual will die. It is important to note that these numbers are averages. Life expectancy predicts how many years an individual born in a particular year will live. Life expectancy is different from mean age of death, which is an average of the ages at which a group of people died in a particular year.