Caregiving for an adult with Down syndrome can, at times, feel like you’re on a long journey with no roadmap. While everyone’s experience is unique, there are some tools available to guide you along the way. The NDSS Caregiving Toolkit consists of supplemental worksheets to the Caregiving and Down Syndrome Guidebook, designed to help start the process of planning for your loved one’s future as they age. The toolkit includes templates for emergency preparedness, building your team, support planning, daily scheduling, and caring for yourself.
Below you will find the PDF version ready to print and fill out by hand. Looking to print extra blank pages for notes? Click here.
This option is a fillable PDF that can be completed online. Looking to add more notes? Click here for a blank fillable page.
More NDSS Caregiving Resources
Aging and Down Syndrome: A Health and Well-Being Guidebook is a resource for families, professionals, direct caregivers, or anyone concerned with the general welfare of an adult with Down syndrome with a specific focus on aging and health-related matters in an individual with Down syndrome such as common medical conditions, Alzheimer’s disease, and mental health.
Alzheimer’s Disease and Down Syndrome: A Practical Guidebook for Caregivers is a resource specifically for those caring for an individual with Down syndrome diagnosed with Alzheimer’s disease. It discusses the biological connection between Down syndrome and Alzheimer’s disease and covers diagnosis, treatment options, communication and behavior strategies, and future planning.
Caregiving and Down Syndrome: A Companion Guidebook to Aging and Down Syndrome: A Health and Well- Being Guidebook was created in 2023 and provides a high-level overview of important information regarding guardianship, creating a support plan, housing, and most importantly self-care for caregivers. In addition to parents, this tool is helpful for older siblings or family friends who have recently become caregivers of an individual with Down syndrome.