Alzheimer’s Awareness Month: Understanding Alzheimer’s Disease in Adults with Down Syndrome

Every September, we recognize World Alzheimer’s Month, a time to raise awareness, share resources, and honor families impacted by Alzheimer’s disease and other forms of dementia. For the Down syndrome community, this month carries special significance. Adults with Down syndrome have a greatly increased risk of developing Alzheimer’s disease or a very similar type of dementia as they age.

The Link Between Down Syndrome and Alzheimer’s Disease

People with Down syndrome are born with an extra copy of chromosome 21, which carries the amyloid precursor protein (APP) gene. Over time, excess amyloid accumulation in the brain contributes to the development of Alzheimer’s disease.

Recent research, including studies in The Lancet, highlights p-tau17, a biomarker that may help track Alzheimer’s progression in people with Down Syndrome, which can be detected in a blood test. Understanding biomarkers like p-tau17 could lead to earlier detection and more effective interventions.

Prevalence of Alzheimer’s in Down Syndrome

According to the Alzheimer’s Association

• About 30% of adults with Down syndrome in their 50s have Alzheimer’s dementia.
• About 50% of adults in their 60s are affected.

With this high prevalence, early recognition and monitoring are critical for families and caregivers.

Early Signs and Symptoms to Watch For

Early signs of dementia in adults with Down syndrome often differ from typical memory loss. It often shows up with personality changes. Families should look for:

• Reduced interest in socializing or expressing thoughts
• Decreased enthusiasm for daily activities
• Trouble paying attention or following routines
• Increased sadness, anxiety, irritability, or aggression
• Sleep disturbances or restlessness
• New seizures in adulthood
• Decline in coordination or walking
• Changes in behavior, increased excitability, or noisiness
  

Diagnosis: Why Baseline Function Matters

Many adults with Down syndrome may not self-report memory concerns, making diagnosis challenging. Experts recommend:

• Documenting baseline abilities by age 35. Record typical social, cognitive, and daily functioning.
• Monitoring ongoing changes. Track shifts in personality, mood, or interest in activities.
• Seeking specialized dementia assessments. Cognitive testing should be paired with caregiver input.
• Ruling out other medical causes. Conditions such as thyroid disorders, sleep apnea, depression, or vision/hearing problems can mimic dementia symptoms.
  

Essential Resources for Families

The NDSS Aging & Down Syndrome: Health & Well-Being Guidebook is an excellent resource for families and caregivers. It covers:

• Age-related health conditions
• Emotional and psychiatric well-being
• Alzheimer’s disease in Down syndrome: what to watch for, progression patterns, and caregiving strategies
• Planning for care, living environments, and end-of-life considerations
  

Download the guide here: Aging & Down Syndrome: A Health & Well-Being Guidebook

Hope Through Research and Advocacy

Organizations like the Global Down Syndrome Foundation and the Linda Crnic Institute for Down Syndrome are leading cutting-edge research on Alzheimer’s disease in Down syndrome. Studies on biomarkers like p-tau17 are helping to improve early detection, care planning, and interventions for adults with Down syndrome.

Key Takeaways for Families and Caregivers

• Talk with your healthcare provider about establishing a baseline by age 35.
• Learn to identify early signs of Alzheimer’s disease in Down syndrome.
• Seek professional support promptly if concerning changes appear.
• Use resources like the NDSS guidebook to inform care and planning.
• Stay connected with research and advocacy groups advancing Alzheimer’s care.
  

Awareness, early detection, and proactive care can make a meaningful difference for adults with Down syndrome and their families.