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Alzheimer’s Disease in People With Down Syndrome

Many but not all people with Down syndrome develop Alzheimer’s disease when they get older.

People with Down syndrome are born with an extra copy of chromosome 21, which carries a gene that produces a specific protein called amyloid precursor protein (APP). Too much APP protein leads to a buildup of protein clumps called beta-amyloid plaques in the brain. The presence of beta-amyloid plaques is one of the hallmarks of Alzheimer’s disease.

Many but not all people with Down syndrome develop Alzheimer’s disease when they get older.

By age 40, most people with Down syndrome have these plaques, along with other protein deposits, called tau tangles, which cause problems with how brain cells function and increase the risk of developing Alzheimer’s symptoms. Estimates suggest that 50% or more of people with Down syndrome will develop dementia due to Alzheimer’s disease as they age.

This type of Alzheimer’s in people with Down syndrome is not passed down genetically from a parent to a child.

Down Syndrome and Alzheimer’s Research

Scientists are working hard to understand why some people with Down syndrome develop dementia while others do not. They want to know how Alzheimer’s disease begins and progresses so they can develop drugs or other treatments that can stop, delay, or even prevent the disease process. They are also hopeful that research on Alzheimer’s and Down syndrome will not only help those with both conditions, but also may lead to effective treatments for all people with Alzheimer’s. Research in this area includes:

  • Basic studies to improve understanding of the genetic and biological causes of brain abnormalities that lead to Alzheimer’s
  • Observational research to measure cognitive changes in people over time
  • Studies of biomarkers (biological signs of disease), brain scans, and other tests that may help diagnose Alzheimer’s — even before symptoms appear — and show brain changes as people with Down syndrome age
  • Clinical trials to test treatments for dementia in adults with Down syndrome

The Alzheimer’s Biomarkers Consortium – Down Syndrome (ABC-DS) is a National Institutes of Health (NIH)-funded research initiative to find biomarkers that indicate Alzheimer’s disease is developing or progressing, and to track the Alzheimer’s process in people with Down syndrome.

Checklist: Next Steps After an Alzheimer’s Diagnosis

A diagnosis of Alzheimer’s disease can be difficult. However, having accurate information and support can help you know what to expect and what to do next as the disease progresses. Explore steps you can take after an Alzheimer’s diagnosis with this checklist.

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#AlzheimersAndBrainAwarenessMonth

Lifestyle Changes that May Help Lower Your Risk for Dementia

Many factors may influence your risk of dementia, including your genes, environment, and lifestyle. You can’t change some factors, but as with many diseases, there may be steps you can take to help lower your risk of dementia. Consider incorporating these healthy behaviors into your lifestyle:

  • Eat a healthy diet. Aim for a mix of fruits and vegetables, whole grains, lean meats and seafood, unsaturated fats such as olive oil, and low-fat or nonfat dairy products. Try to limit other fats and sugars.
  • Stay mentally active. Participate in activities that can help keep your mind active, including reading, taking up a new hobby, learning a new skill, working or volunteering, and socializing.
  • Take care of your mental and physical health. This includes getting your recommended health screenings, managing chronic health issues such as depression or high cholesterol, and regularly checking in with a health care provider.
  • Connect with family and friends. Connecting with people and engaging in social activities can prevent social isolation and loneliness, which are linked to higher risks for cognitive decline and Alzheimer’s disease.

Learn about more heathy lifestyle choices that may help reduce your risk for dementia.

What are the Signs of Alzheimer’s Disease?

Alzheimer’s disease is a brain disorder that slowly destroys memory and thinking skills. It can also cause changes in a person’s behavior and personality. Symptoms vary from person to person and may include:

  • Having more trouble coming up with words compared to other people who are the same age
  • Vision and spatial issues, such as awareness of the space around them
  • Impaired reasoning or judgment, which can impact decisions
  • Taking longer to complete normal daily tasks
  • Increased anxiety and/or aggression
  • Repeating questions

Explore additional signs and symptoms of Alzheimer’s on the Alzheimers.gov website. This information is also available in Spanish.

#AlzheimersAndBrainAwarenessMonth

What are Adult Day Services?

What are Adult Day Services? (ADS)

ADS’s are community-based programs designed to support adults with physical and/or cognitive limitations who may need supervised care in a safe place outside the home. ADS’s also can provide support services to older adults who want to avoid the risks of social isolation and loneliness. ADS’s as well may prevent or postpone nursing home placement. In addition, ADS’s provide a respite to care providers who need a break from caregiving duties and personal time for themselves. ADS centers generally operate during daytime hours Monday through Friday. Some programs however offer services in the evenings and on weekends. Although each center may differ in terms of amenities, most adult day centers offer:

  • Social opportunities to interact with peers.
  • Activity programs including field trips and community speakers.
  • Transportation to and from the center, usually door to door.
  • Nutritious meals and snacks with some centers offering special diets.
  • Personal care help with toileting, grooming, eating, and other personal activities of daily living.
  • Therapeutic exercises and activities for the mind and body.
  • Physical, occupational and speech therapies.
  • Medication dispensing and health monitoring.
  • Support services for care partners in learning caregiving techniques and self-care.
  • Cost is much less than home care, assistive living, memory care or nursing home care.

Search for Adult Day Services near you on ilbrainhealth.org.

New Funding Opportunities from NIA

Recent funding opportunities and notices

This alert links to all of the Funding Opportunity Announcements and Notices published by the National Institute on Aging at NIH in the previous month, giving researchers and trainees a heads up about what’s new.

Read about the latest NIA Funding Opportunities (published in April 2022) by clicking on the links below:

Notices