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

Alzheimer's Disease & Down Syndrome: A Practical Guidebook for Caregivers

November 2017 | National Down Syndrome Society - Resource

The guidebook linked below was published by the National Down Syndrome Society "to help empower families and caregivers with knowledge about the connection between Down syndrome and Alzheimer's disease, suggestions about how to carefully and thoughtfully evaluate changes that may be observed with aging, and guidance about how to adapt and thrive within an ever-changing caregiving role when a diagnosis is made." NDSS requires users to provide their name, email address, city, and state to download the resource.

Alzheimer's Disease & Down Syndrome Guidebook The preceding link opens in a new tab or window.



Table of Contents


Person-Centered and Relationship-Centered Principles

What is Alzheimer's Disease?

What is the Connection Between Down Syndrome and Alzheimer's Disease?

Staying Healthy: Brain and Body

The Importance of an Accurate Diagnosis

The Importance of a Baseline Assessment

Identifying Change Between Baseline and Current Abilities

Seeking an Assessment

The Importance of a Medication Review

Arriving at a Diagnosis

Now What?

The Natural Progression of Alzheimer's Disease

Stages of Alzheimer's Disease

Common Physical Complications of Alzheimer's Disease

Physical and Cognitive Wellness in Alzheimer's Disease

A Note About Sudden Changes

Treatment of Alzheimer's Disease

General Principles of Caregiving for Adults with Alzheimer's Disease

Practical Principles and Tips for Caregivers of Adults with Down Syndrome and Alzheimer's Disease

Planning for a Meaningful Day

Practical Tips in Planning Meaningful Activities

Example of a Daily Plan

Examples of Activities Appropriate for Adults with Alzheimer's Disease


Improving Communication to Improve Connection

Learning the Language of Alzheimer's Disease

Basic Behavioral Principles

A Word About Pain

Tying It All Together: Communication and Behavioral Strategies

Care for the Caregiver

Caregiver Stress

Practical Needs Over the Lifespan

Planning for the Future

Alzheimer's Disease and End of Life


Additional Resources

Alzheimer's Disease and Dementia

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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.