A group of people are smiling with their arms around each other in front of a covered outdoor area. In the front of the group from left to right there is a young, dark-haired white man with Down syndrome seated next to an older white haired, white woman with Down syndrome and a middle aged white man with a bald head and gotee. Behind them from left to right are a young white woman with long sandy hair, a young white man with dark hair and a middle-aged white woman with light brown hair.

Down Syndrome-associated Alzheimer's Disease For Families & Caregivers

Down Syndrome-associated Alzheimer's Disease Resources for Families & Caregivers

Individuals with Down syndrome are living longer than ever before. With this longevity, a new challenge has appeared: Down syndrome-associated Alzheimer’s disease (DS-AD). Nearly all adults with Down syndrome have Alzheimer’s disease markers in their brains by age 40.1 As a caregiver, family member, or individual with Down syndrome, understanding DS-AD is the key to navigating this complex issue. No matter where you are on this journey, we are here to help.

This page provides families and caregivers with:

  • Resources about DS-AD, including why adults with Down syndrome are at higher risk, early signs to watch for, and how to track changes over time

  • Practical tools and guidance to support healthy aging and long-term planning

  • Information about clinical trials and research opportunities, including what to expect, how to participate, and resources to navigate study processes

    Looking for additional information or resources? Contact us at Research@ndss.org.

  1. Rafii MS, Lukic AS, Andrews RD, et al. PET imaging of tau pathology and relationship to amyloid, longitudinal MRI, and cognitive change in Down syndrome: Results from the Down Syndrome Biomarker Initiative (DSBI). J Alzheimer's Dis. 2017;60:439–450. doi:10.3233/JAD-170390.

... 65% of caregivers recently surveyed indicated they learned about the connection between Alzheimer's disease and Down syndrome through personal research online. 

 

We are here to help you get the information you need.

Resources for Caregivers

DS-AD Resources for Caregivers

Alzheimer’s Disease & Down Syndrome

NDSS’ Alzheimer’s Disease & Down Syndrome page offers clear, guidance for caregivers on key topics: why adults with Down syndrome have a higher risk, what early signs to watch for, how to track changes over time, and more.

Recognizing Alzheimer’s Disease

Find information to help recognize Alzheimer's disease, such as establishing a baseline, identifying behaviors, and seeking a diagnosis.

National Task Group on Intellectual Disabilities and Dementia Practices

The NTG team has compiled a comprehensive library of key news articles and publications for family members and caregivers caring for adults with an intellectual disability living with dementia.

Webinar: Alzheimer’s Disease in People with Down Syndrome

A one-hour webinar about DS-AD offering a comprehensive overview of the science and current research into new treatments.

Alzheimer’s Association Down Syndrome Resource Page

An overview of Down syndrome-related facts, figures, and resources from the Alzheimer’s Association.

Local Support Finder

Connect with Down syndrome organizations and supports in your local community. Use it to find local partners and resources. 

Jenny’s Diary

Tips for talking about dementia with someone who has an intellectual disability.

GUIDE 

NTG (National Task Group on Intellectual Disabilities and Dementia Practices) shares GUIDE (Guiding an Improved Dementia Experience). This resource is a new alternative payment model established by the Centers for Medicaid and Medicare Services (CMS) to provide quality care for people with dementia.

Down syndrome and Alzheimer’s disease information for self-advocates

This is a resource dedicated for self-advocates with Down syndrome to learn about Alzheimer's disease. Read the English resource or the Spanish resource.

General Aging Resources for Caregivers

Aging & Down Syndrome: Health & Well-Being Guidebook

A practical, caregiver-friendly reference designed to help families understand what to anticipate as adults with Down syndrome grow older and how to plan proactively for healthy aging.

Caregiving & Down Syndrome

Provides families and caregivers with easy-to-use information for every stage of life so individuals can thrive with the right supports in place.

The Dani Plan

The Dani Plan is a secure, online platform designed to help families organize and consolidate crucial information for a person with a disability or an aging loved one.

End-of-Life Guidebook

This guidebook offers compassionate, practical guidance to help families and caregivers navigate end-of-life planning and care.

Clinical Trials, Tools & Resources for Caregivers

Guide to DS-AD Clinical Trials

Get an overview of the science behind DS-AD and the current clinical trials related to DS-AD research.

What to Expect Videos

Featuring individuals with Down syndrome, the What to Expect Videos show step-by-step procedures such as an MRI, PET scan, and lumbar puncture. 

Clinical Trial Finder

Find the latest opportunities to participate in Down syndrome research with this online search tool.

Alzheimer Biomarkers Consortium-Down Syndrome (ABC-DS) Natural History Study

A 5-year international research study, ABC-DS, follows volunteers with Down syndrome to find signs and risks of Alzheimer’s disease. 

Trial-Ready Cohort Down Syndrome (TRC-DS)

Interested in participating in a clinical trial related to DS-AD? Register for TRC-DS, a community of potential clinical trial participants.

Understanding Research and Down Syndrome

Read an overview on how research helps individuals with Down syndrome.

Understanding Clinical Trials

Read an overview on how clinical trials are an important part of research and support individuals with Down syndrome.

Ready for Research?

A white man with Down syndrome is seated in an exam chair wearing a gray polo shirt. He is having his blood drawn by a white woman with short auburn hair and glasses, wearing scrubs and purple exam gloves.

Clinical Trial Finder

A young, white woman with Down syndrome is seated in a medical exam room having her blood pressure taken by a white woman with ligh brown hair. Her back is to the camera. The woman with Down syndrom has light brown hair and is wearing a pink headband and blue shirt with dark slacks.

Register to Participate in a Future Study

A man wearing glasses with dark hair and beard has his back to the camera and is looking at multiple scan images of a human brain and pointing with his finger at one of the images.

Prepare for Medical Procedures

An older white woman with Down syndrome who has short brown hair and is wearing glasses and a dark shirt is sitting in front of some papers at a table and holding a pen. She is seated next to an older white woman with short gray hair with her arm around the back of the chair of the woman with Down syndrome. They are both smiling and looking at each other.

ABC-DS Study of DS-AD