There are several symptoms that may indicate the onset of Alzheimer’s. It’s important to note that the symptoms experienced by people with Down syndrome can be different from the symptoms experienced by the general population. Remember that these symptoms may also indicate some other condition.

• Behavioral Changes

• Decline in abilities

• Difficulty walking

• Memory loss and confusion

• Difficulty with communication

• Changes in sleep patterns

• Change in body functions (e.g., incontinence and difficulty swallowing)

• Onset of seizures

View the resources below to learn more about the symptoms of Alzheimer’s disease in people with Down syndrome:

• Adult Down Syndrome Center | A Change in Behavior in a Person with Down Syndrome and Alzheimer’s Disease

People with Down syndrome have a full or partial third copy of chromosome 21. Chromosome 21 carries a gene that produces proteins (called beta amyloids) that are associated with Alzheimer's. As a result, they are at a higher risk for Alzheimer’s disease.

These individuals also age at an accelerated rate, so they will show signs of dementia at a younger age. It is estimated that more than 50% of people with Down syndrome will develop Alzheimer’s by age 60.

Select the links below to learn more about the connection between Alzheimer’s and Down syndrome:

• Adult Down Syndrome Center | Aging and Alzheimer’s Disease in Adults with Down Syndrome [Webinar Recording]
• Alzheimer’s Association | Down Syndrome and Alzheimer’s Disease
• National Down Syndrome Society | Alzheimer’s Disease and Down Syndrome

When your loved one with Down syndrome is in their mid-30’s, start to screen for changes using a free tool called the NTG-Early Detection Screen for Dementia (NTG-EDSD). The first time you screen is called a baseline assessment. Every year you’ll use the tool and compare the results to the baseline.

Be sure to keep records and bring them to the doctor for annual exams. Point out any changes you notice and ask to discuss them. They may be symptoms of Alzheimer’s, but they could indicate some other treatable condition.

Select the links below to find the screening tool and other related documents:

• NTG-EDSD | Early Detection Screen for Alzheimer’s

If screenings show changes in your loved one, your doctor will start by ruling out other conditions. Then they may refer you to a specialist (e.g, neurologist, geriatrician) for additional testing and an official diagnosis.

While there isn’t a test for Alzheimer’s disease, there are some tools that can help identify it. Your doctor may look for indicators of Alzheimer’s disease by order imaging called a PET scan, or they may take a sample of blood or spinal fluid.

View the resources below to learn more about how Alzheimer’s Disease is diagnosed:

• Adult Down Syndrome Center | How is Alzherimer’s Disease Diagnosed in a Person with Down Syndrome
• Adult Down Syndrome Center | Improving Alzheimer’s Diagnosis and Care for Adults with Down Syndrome Virtual Forum [Webinar Recording]
• Alzheimer’s Association | Medical Tests for Diagnosing Alzheimer’s
• National Institute on Aging | How is dementia diagnosed?

There is currently no cure for Alzheimer’s. There are medications that can help manage behavioral symptoms, and there are some new medications that treat Alzheimer’s disease when dementia is still mild. These new medications have not yet been tested in people with Down syndrome. Your loved one may also be eligible to enroll in clinical trials to help identify new treatments. 

The field is evolving, so ask your doctor for up-to-date information.

Select the links below to find out more about treatments and clinical trials:

• Alzheimer’s Association | Clinical Trials
• National Institute on Aging | Alzheimer’s Clinical Trials Consortium (ACTC)

There is no guaranteed way to prevent Alzheimer’s disease, but there are ways to reduce the risk of developing it. Some of these ways are:

• Maintaining a healthy diet

• Remaining physically active

• Staying hydrated

• Getting good sleep

• Staying socially engaged 

   

Select the links below to find out more about risk reduction and Alzheimer’s prevention:

• Adult Down Syndrome Center | Reducing Risk of Getting Alzheimer’s Disease

• Adult Down Syndrome Center | Alzheimer’s Disease Prevention and Healthy Aging in People with Down Syndrome [Webinar Recording]

• Alzheimer’s Association | Can Alzheimer’s be prevented?

Many doctors don’t receive special training in this area, so share a copy of the brochure or a link to our website. If your doctor would like to speak to other healthcare providers, they can get involved with the DSMIG-USA Interest group, Project ECHO, and share a case.

Alzheimer’s will progress, so it’s important to develop a plan that works for your family. You may want to consider seeking professional help with varied aspects of planning and care.

Select the links below to find out more:

General Information & Guides

• Alzheimer’s Association | Find Local Resources 

• Down Syndrome Australia | Down Syndrome and Dementia: A Guide for Families

• National Down Syndrome Society | Alzheimer’s Disease and Down Syndrome: A Practical Guidebook for Caregivers

   

Financial Planning

• Investopedia | Understanding a Special Needs Trust and its Benefits

• Findlaw | Special Needs Trusts FAQ

Housing

• The Arc | Housing

• HUD Exchange | Section 811 PRA Program

• U.S. Department of Housing and Urban Development | Section 8 Housing Choice Vouchers

• HUD Exchange | National Housing Trust Fund

Legal Planning

• Center for Public Representation | Supported Decision Making
• The Arc California | Supported Decision Making
• Disability Voices United | Supported Decision-Making Handbook for Parents of Adults with Developmental Disabilities in California

Support Groups for Caregivers

• Adult Down Syndrome Center | Support Groups for Caregivers of Individuals with Down Syndrome and Alzheimer’s Disease
• Down Syndrome Connection of the Bay Area | Support Groups for Parents/Caregivers of Adults with Symptoms of Dementia

Support for Individuals with Intellectual and Developmental Disabilities

• Down’s Syndrome Scotland | Let’s Talk About Dementia

• Square Peg Training | Jenny’s Diary

Advanced Care Planning

• Adult Down Syndrome Center | Aging and Down Syndrome

• Alzheimer’s Association, NDSS, NTG | End-of-Life and Down Syndrome Guidebook