The first year of my daughter’s life felt like graduate school on all things Down syndrome (DS). Shortly before her first birthday, I attended the Down Syndrome Congress annual convention where I learned about many interventions and supports that would maximize her potential to live a full — and possibly independent — life. 

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At that 2013 convention, I knew several other mothers. We had met on a Down Syndrome Diagnosis Network’s closed Facebook group for mothers. The groups are organized by the ages of their children with DS. Many of us were meeting each other, as well as many of our babies, in person for the first time. 

Information, while powerful, can also be intimidating. With a panicked look on her face, a mother approached me in a hallway and told me she’d just learned that our children would inevitably develop dementia in their 50s.  

In one moment, everything I’d envisioned for my daughter’s life suddenly felt like a large steamship moving out to sea, getting smaller and smaller. 

The life expectancy of a baby born with Down syndrome in the 1980s was 25. Today it is 61 and continues to climb. As the number of people with Down syndrome living into old age increased, it became evident that 80% to 90% of those older than 50 exhibited signs of dementia. 

In the same four decades, research on Alzheimer’s has increased substantially, including in the DS population. We now know that by their 40s the brains of people with DS will have acquired the pathologies, or physical changes, for Alzheimer’s (such as amyloid plaques) with most becoming symptomatic in their 50s. 

I recently interviewed Dr. Elizabeth Head, a neuropathology core co-investigator at the Alzheimer’s Disease Research Center at University of California Irvine. While she collaborates with researchers studying Alzheimer’s in the general population, her research is focused specifically on the Down syndrome population. 

This win-win approach, in which anything learned about Alzheimer’s by either research team benefits everyone, is encouraging. But what about treatments unique to people with DS? Will today’s research yield treatments and therapies that will minimize my daughter’s likelihood of developing dementia? 

Dr. Head’s answer is a cautiously optimistic yes. Her team and others are conducting longitudinal studies, in which volunteers with Down syndrome participate for many years, discovering relevant data that are the building blocks for future treatments.  

Using biomaterial from the DownSyndrome Achieves biobank at Cincinnati Children’s Hospital Medical Center, the many scientists in Dr. Head’s team look for biomarkers to identify who is on the trajectory to developing dementia and — just as important — who is not. Only the DSA biobank is open to all qualified researchers and not specific to one institution. 

Dr. Head’s observational studies, as well as others occurring around the world, suggest that 10% to 15% of people with DS are resistant to dementia even when the brain pathologies associated with dementia are present. 

“Knowing which brain proteins may be involved, we can then perhaps develop interventions and some of those interventions will be more effective based upon the age of the person,” Dr. Head said. “What works for someone in their 40s might not work well for someone in their 30s.” 

In recent years, scientists have determined that the brain remains plastic throughout our lives, including in old age. This means that there isn’t an age for which potential interventions for improved cognition should no longer be studied. 

Perhaps the best news from Dr. Head is that just because a family didn’t begin interventions for their loved one with DS as a baby or small child does not mean that person is on a trajectory for something bad later.  

Many studies looking at treatments for Alzheimer’s in people with DS are occurring now, with more in the works. There is great promise that in the coming decades a diagnosis of DS will no longer mean that dementia is nearly inevitable.  

There is also a growing body of research that, as with the general population, lifestyle choices can minimize the likelihood of a person with DS developing dementia. These lifestyle choices, which can be implemented today, include a nutritious diet, exercise, rich social interactions and continuous learning.  

Dr. Head encourages families to include simple exercises like walking daily, eating nutrient-rich foods and having adults with DS continue to learn new skills. She suggests taking classes, such as cooking (another way to increase healthy meal options) or learning to play an instrument. 

“Nothing should be held back from people with Down syndrome,” Dr. Head said.  

The donation of biomaterial of people with Down syndrome, such as blood, is modestly painful but significantly impacts the work of Dr. Head and her team as well as other DS researchers around the world. I strongly encourage people with DS to donate biomaterial for this and other research.  

Families know how hard their loved ones with Down syndrome work from the first day of life. Their levels of cognition and independence have the potential to be maintained throughout life by supporting the important and exciting research occurring today. 

This was first published in the Akron Beacon Journal on Sunday, December 11, 2022.