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For people with Down syndrome, family members, caregivers and professionals.

End-Of-Life and Down Syndrome Guidebook

April 2023 | National Down Syndrome Society - Resource

The resource linked below is a guidebook from the National Down Syndrome Society (NDSS). According to the Introduction, the aim of the guidebook is to "provide guidance for the crossroads and decisions that arise in later life and at the end of life."

NDSS requires users to provide their name, email address, city, and state to download the resource. 

End-of-Life and Down Syndrome Guidebook opens in new window


End-of-life and Down syndrome guidebook from NDSS


Table of Contents


Aging and Down Syndrome Overview

Promoting Dignity and Choice

Thinking Ahead

Proactive Planning

Advance Directives and Decision-Making

Considering Brain Donation

Late-Stage End-Of-Life Care

Death, Grief, and Coping


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Please note: The information on this site is for educational purposes only and is not intended to serve as a substitute for a medical, psychiatric, mental health, or behavioral evaluation, diagnosis, or treatment plan by a qualified professional. We recommend you review the educational material with your health providers regarding the specifics of your health care needs.