Alzheimer’s Disease and Down Syndrome: What Families Need to Know

At John’s Crazy Socks,  our mission has always been to spread happiness. Yet some challenges in life weigh heavily on our hearts, and Alzheimer’s disease is one of them. People with Down syndrome, people like John, face a reality that they  willlikely develop Alzheimer’s disease as they age. For our family, we have already felt the impact of this disease.  This issue is deeply personal. John’s grandmother, whom we call Mamo, lives with Alzheimer’s disease. 

 

We never want to act like a victim. We always ask: what can we do? That’s why we support research through our Giving Back program, why we created  Alzheimer’s Awareness Socks to benefit our charity partner LuMind IDSC,  and why our family is taking part in a medical study. We want to help shed light on the connection between Down syndrome and Alzheimer’s disease and share reasons for both concern and hope. 

 

The Link Between Down Syndrome and Alzheimer’s 

Alzheimer’s disease is the most common cause of dementia, a condition that slowly destroys memory, thinking, and independence. In the general population, women have a 21 percent lifetime risk of developing Alzheimer’s by age 65, and men have a 12 percent risk. But for people with Down syndrome, the numbers look very different. By age 65, more than 90 percent of people with Down syndrome will develop Alzheimer’s disease. 

 

Why the difference? The answer lies in our chromosomes. Most people are born with 23 pairs of chromosomes. People with Down syndrome have three copies of chromosome 21. That extra chromosome (John calls it extra love) carries a gene called APP,  which produces amyloid precursor protein. Over time, the brain breaks down this protein into smaller fragments called amyloid beta. These fragments can clump together, forming plaques that are toxic to brain cells. 

 

Another hallmark of Alzheimer’s is the buildup of twisted fibers known as tau tangles inside neurons. Together, plaques and tangles interfere with brain function, leading tothe memory loss and cognitive decline that families know too well. 

 

Because of the extra APP gene, people with Down syndrome produce more amyloid protein. By age 40, nearly all individuals with Down syndrome have significant levels of amyloid plaques in their brains. This biological reality explains why Alzheimer’s strikes earlier and more often in the Down syndrome community. 

Shape 

John and his beloved Mamo.

 

Why This Matters for Families 

For adults with Down syndrome, Alzheimer’s is the leading cause of death. That fact underscores why education and early action are so important. 

 

Families often notice the first signs as changes in behavior, loss of a skill, or unusual forgetfulness. Because many adults with Down syndrome already face unique health challenges, it can be difficult to recognize what is Alzheimer’s and what is part of aging. That’s why specialists recommend working with doctors who understand both conditions and why families should track any concerns and bring them to a healthcare provider. 

 

For us, watching Mamo live with Alzheimer’s has made this issue even more real. It is a reminder of why we cannot stand still. We want John, and so many others like him, to have the best chance at a full and happy life. 

 

Signs of Hope in Research 

 

For decades, doctors could only diagnose Alzheimer’s after symptoms became clear. But new medical tools called biomarkers can now detect changes in the brain years earlier. This shift is opening the door to prevention and early treatment. 

 

One major development came in 2023, when the FDA approved Leqembi, the first drug proven to slow the progression of Alzheimer’s. While questions remain about how and when people with Down syndrome will gain access, this milestone has sparked new hope. 

 

Organizations like LuMind IDSC are working to ensure that the Down syndrome community is part of these breakthroughs. By building awareness, supporting families, and advancing clinical trials, they are pushing for a future where Alzheimer’s does not have to be the final chapter for people with Down syndrome. 

 

How John’s Crazy Socks Supports the Cause 

At John’s Crazy Socks, giving back is woven into everything we do. Since our beginning, we have donated more than $800,000 to charity partners. Among them is LuMind IDSC,  an organization dedicated to fighting Alzheimer’s in the Down syndrome community. 

 

To raise funds and awareness, we created Alzheimer’s Awareness Socks. Every purchase supports research, and every pair helps start a conversation. For John, it is more than a product —it’s a way to honor Mamo and to fight for his own future. 

 

An image of our Alzheimer’s Awareness Socks — spreading hope one step at a time.

 

What Families Can Do Today 

If you love someone with Down syndrome, here are steps to take: 

  • Find healthcare professionals with expertise in both Down syndrome and dementia. 

  • Track any concerning changes in behavior, skills, or memory. 

  • Support a healthy lifestyle with good nutrition, regular activity, social engagement, and quality sleep. 

  • Stay informed about clinical trials and consider participating in research. 

  • Connect with organizations like LuMind IDSC for resources and community. 

 

Knowledge and action cannot erase the risk, but they can bring families comfort, guidance, and hope. 

 

John at Massachusetts General Hospital, proudly participating in the LuMind research study.

 

A Shared Journey 

Alzheimer’s is a challenge none of us choose, but it is one we can face together. For our family, it is personal: Mamo’s journey reminds us of the need for compassion, John’s journey drives us to support research, and our mission at John’s Crazy Socks keeps us focused on spreading happiness even in the face of difficulty. 

 

We invite you to join us: learn more, share this message, and wear our Alzheimer’s Awareness Socks  with pride. Together, we can support families, advance research, and move toward a brighter future. 

 

Search