Medical

• Alzheimer's Disease

  Individuals with Down syndrome are at an elevated risk for developing Alzheimer’s disease as they age. Fortunately, many resources exist to support families and caregivers of individuals experiencing both Down syndrome and Alzheimer’s Disease.

  • NDSS’ Alzheimer’s Disease & Down Syndrome: A Practical Guidebook for Caregivers provides a concise, but informative overview of the relationship between Down syndrome and Alzheimer’s Disease, as well as provides guidance and resources for caregivers. The publication is available for digital download from the NDSS website.
  • DSAWM and the Alzheimer’s Association partner to host a monthly support group for parents and caregivers of individuals with Down syndrome over the age of 30. Aging with Down Syndrome participants share experiences and discuss the process of caring for loved ones growing older with Down syndrome. Visit the DSAWM calendar to find the next meeting.

  For more information about the programs and services offered by the Alzheimer’s Association Greater Michigan chapter, visit alz.org/gmc or call 800-272-3900.

• Communicating with Your Physician
  • Published by NDSS, the Aging and Down Syndrome: A Health & Well-Being Guidebook provides an overview of the medical and psychosocial needs that are unique to individuals with Down syndrome as they age. Physical copies are available at DSAWM. Please contact us at 616-956-3488 or victoria@dsawm.org to request a copy.
  • Boston’s MassGeneral Hospital For Children created a Talking to the Doctor Workbook for individuals with Down syndrome that focuses on sharing feelings and asking questions. They also offer remote second opinions to patients and health care providers in the United States. Similarly, Children’s Hospital of Philadelphia offers a Toolkit for Transitioning to Adult Medical Care for individuals with Down syndrome.
  • LuMind IDSC has also launched the first-of-its-kind DSC2U, an “online toolkit that provides customized, expert-driven information for people with Down syndrome from age 1 through adulthood. Immediately upon completion of the form, caregivers receive two personalized documents: one for themselves and one to share with their primary healthcare provider. Both documents contain detailed, customized suggestions, follow-up questions, and conversation prompts that are designed to optimize time with a primary care provider and offer caregivers the vocabulary and tools they need to advocate for their loved one.”
  • For support when speaking with dental providers, take a look at the Dental Care Guidance for Caregivers of Patients with Down syndrome.
• Finding a Provider

  Looking for a medical provider? The Preferred Medical Provider List is maintained by Down Syndrome Head Start and lists doctors, dentists, and other providers recommended by Michigan families experiencing Down syndrome. **Please note that Down Syndrome Head Start’s website has been down as of November 2018. This list has not been updated since 2017. If you are looking for more up-to-date information, we recommend reaching out on the Michigan Parents of Children with Down Syndrome Facebook group.

  Looking for a dentist? The Special Care Dentistry Association (SCDA) is a unique international organization of oral health professionals and other individuals who are dedicated to promoting oral health and well-being for people with special needs. A list of Michigan dentists belonging to SCDA can be found on their site. The Michigan Parents group on Facebook is also a good resource for finding dental recommendations.

• Paying for Healthcare Expenses
  • Individuals with disabilities are eligible for Social Security and Medicaid upon turning 18. For more information about applying for or utilizing benefits, contact the Disability Advocates of Kent County’s Family Support department or your local Arc office.