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.
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Table of Contents
Introduction
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
Communication
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