Dementia Education for Caregivers of Adults with Down Syndrome and IDD
Adults with Down syndrome are at a higher risk of developing Alzheimer’s disease earlier in life, so early education and support is important.
Introduction
Caring for an adult with Down syndrome or IDD who may be experiencing memory or behavior changes can be challenging. Our free four-part workshops are designed to provide clear, practical information and real-life challenges to support caregivers.
CASL’s free four-part workshop series offers practical tools for family and paid caregivers supporting adults with Down syndrome or IDD who may be experiencing memory or behavior changes. Recordings and resources are available in our resource library.
Workshop #1
Caring for someone with Down syndrome or another intellectual or developmental disability (IDD)? This workshop is for you. Join CASL’s IDD Workshop series as we explore how Alzheimer’s disease affects people with Down syndrome and IDD differently — including what early signs to watch for, why they can appear as early as the late 30s, and how to use the NTG-EDSD tracking tool to document changes over time. We also walk through box breathing as a simple stress management technique for caregivers.
Workshop #2
Understanding the stages of Alzheimer’s disease can help you feel more prepared and confident as a caregiver. In this workshop, we walk through the early, middle, and late stages of Alzheimer’s — what changes to expect, how to support the person you care for at each stage, and how to use the EDSD tool to track changes over time. We also practice progressive muscle relaxation, a simple technique to help caregivers manage stress and take care of themselves.
Workshop #3
As Alzheimer’s progresses, new challenges can come up — and knowing what to expect makes a difference. This workshop covers four common complications — changes in eating and swallowing, incontinence, seizures, and walking and balance — along with practical strategies to help keep the person you support safe and comfortable. We also work through real caregiver scenarios and introduce gratitude journaling as a tool for managing the emotional weight of caregiving.
Workshop #4
Planning ahead is one of the most meaningful things you can do for someone you love. In this final workshop of CASL’s IDD series, we cover advance care planning for people with Down syndrome and IDD — including what palliative and hospice care involve, how to recognize end-of-life signs, and how the Five Wishes guide can help families document personal, medical, and emotional preferences. We close with a guided imagery exercise to support caregiver wellbeing.