Issues

People with Down syndrome are living longer, but Alzheimer’s is leading cause of death

The average life expectancy for a person in Canada who has Down syndrome has risen to age 60, and the one big culprit preventing the age from continuing to increase is Alzheimer’s disease. It is the number one cause of death in adults with Down syndrome.

Key Takeaways:

  • Average life expectancy for people with Down syndrome has increased from age four in 1950 to age 60 today.
  • As people with Down syndrome live longer, a connection to Alzheimer’s disease is being researched, as 50% of people with Down syndrome develop Alzheimer’s by age 60.
  • Down syndrome is caused when a person has three copies of chromosome 21, which is also connected to the amyloid plaque linked to Alzheimer’s.

The Details:

In 1950, most people in Canada who had Down syndrome died extremely young — the average was just age four. According to a recent study, the average life expectancy has risen to age 60, but the number one killer of people with Down syndrome at this age remains Alzheimer’s disease, which can begin to set in around age 40 — years earlier than average. About half of all people with Down syndrome will develop Alzheimer’s by age 60. Because the chromosome associated with amyloid plaques (abnormal clumps of protein fragments linked to Alzheimer’s) is the same chromosome (21) that causes Down syndrome, people with Down syndrome are at an increased risk of developing Alzheimer’s.

“[T]here’s one big culprit getting in the way [of a longer lifespan], and that is Alzheimer’s disease,” said Dr. Brian Skotko, senior author of a study published earlier this year in the journal of Genetics in Medicine. “The number one cause of death in adults with Down syndrome are complications related to Alzheimer’s.” These include falls, memory loss, and choking.

Researchers across multiple nations, including the U.S., Australia, and Canada, are working to understand how many people with Down syndrome have reached adulthood and what struggles they face with medical, financial, and social supports. The hope is to help them live longer lives.

“Because individuals with Down syndrome didn’t live that long historically, the system still really treats Down syndrome as a pediatric issue, a children’s issue,” said Laura LaChance, co-author of the study and executive director of the Canadian Down Syndrome Society. It “hasn’t kept up to date in supports or pathways or inclusive strategy that’s tailored to adults with Down syndrome.”

Doctors and advocates are working to educate primary care providers on the link to Alzheimer’s as well as other conditions like sleep apnea and thyroid problems that adults with Down syndrome face.

Janet Charchuk is 42 and lives with Down syndrome. In hopes of preventing Alzheimer’s, she is careful about her diet, sleep, and exercise. She does brain exercises such as word searches and stays active by working at an equine therapy ranch, competing in the Special Olympics, and serving on the board of Down Syndrome International.

The Bottom Line:

People with Down syndrome are living long and meaningful lives, and the connection between Down syndrome and Alzheimer’s disease is helping researchers better understand how to help everyone who develops Alzheimer’s.

According to Professor Bill Mobley of the University of California San Diego, “We all benefit so much from our interaction with folks with Down’s syndrome.”

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