According to the COVID-19 and Down Syndrome Resource Guide published by Global Down Syndrome Foundation, the ongoing pandemic has led to increases in anxiety, depression, and other mental health challenges for many people, including families, caregivers, and people with Down syndrome.
People with Down syndrome can be very sensitive to sudden changes to their routine and environment, which may cause stress and anxiety. Common behaviors that families/ caregivers may see that could indicate a child or adult with Down syndrome is experiencing stress during the pandemic include the following:
- Behavioral changes or regression/ loss of certain previous skills (e.g., incontinence when previously toilet trained, no longer wanting to or unable to complete activities of daily living that they were previously able to do)
- Increase in “self-talk”
- Increased isolation or desire to be alone
- Rapid shifts in mood or tearfulness
- Disruptive behaviors or angry reactions not present before the pandemic
- Specific fears, anxieties, or phobias not present before the pandemic.
Families and/or caregivers can try the following to support a person with Down syndrome during the challenges presented by the pandemic:
- Maintain routines/structure as much as possible with visual schedules and checklists
- Find approved ways to help the person with Down syndrome stay connected, including video chat, texting, phone calls, and letters
- Make a list of activities that are allowed, both indoors and outdoors, such as bike rides, or virtual dance parties where it is possible to stay physically distanced
- Put together a memory photo book about the people or activities that are missed
- Use a social story explaining the situation in simple, first-person terms
- Validate the person’s feelings, no matter what they are feeling. Be reassuring and try not to convey your own anxieties.
The pandemic has created incredible stress and challenges for parents and caregivers as well. There is no doubt it has been difficult trying to balance employment, general uncertainty, remote learning, and more. It is important to keep in mind that people with Down syndrome may be more easily influenced by the emotions of others, so be mindful of how your own emotions may be affecting your loved one with Down syndrome.
Make sure to take time for yourself, reach out to your social networks for support, and identify respite care if needed. A great resource is St. Louis Arc’s Tips for Finding and Interviewing a Respite Provider and watch a Q&A with St. Louis Arc’s Family Support Director about their Respite Program here: https://youtu.be/Da8IoZf9ixc.
You can find the entire COVID-19 and Down Syndrome Resource Guide by visiting https://www.globaldownsyndrome.org/covid-19 and find other mental health resources for people with Down syndrome at https://adscresources.advocatehealth.com and https://ndss.org/resources/mental-health-issues-syndrome
NEED IMMEDIATE SUPPORT?
Having access to an empathic ear can be helpful when managing stresses and frustrations. Locally, the Behavioral Health Response line offers 24/7 crisis counseling by phone at 314-469-6644. You can also access support through the Text Crisis Line by texting HOME to 741741.
DSAGSL Resource Guide- Specialty Medical & Therapy Services and Mental Health/ Behavior Services (pages 3 & 4). https://dsagsl.org/wp-content/uploads/2020/07/DSAGSL-Resource-Guide-Update-JUL-2020.pdf
*DSAGSL is working on creating a Guide to Mental Health Resources. When complete, the guide will be posted here as well as on our website under Support Resources. Check back for updates coming soon!
National Down Syndrome Society (NDSS) Aging and Down Syndrome Health & Well-Being Guidebook https://www.ndss.org/wp-content/uploads/2017/11/Aging-and-Down-Syndrome.pdf
Mental Wellness in Adults with Down Syndrome: A Guide to Emotional and Behavioral Strengths and Challenges 2nd Edition. Dennis McGuire, Ph.D. and Biran Chicoine, M.D. Woodbine House; Second Edition. (2021) https://www.woodbinehouse.com/product/mental-wellness-in-adults-with-down-syndrome-a-guide-to-emotional-and-behavioral-strengths-and-challenges/
Down Syndrome: When to Worry About Mental Health and What to Do About It! – A Guide for Parents and Care-Givers. Friedlander, R. & Johnson, P. Kingston, NY: NADD Press. (2009) www.thenadd.org
Cognitive Development and the Psychological Evaluation. Pulsifer, M. (1999). www.kennedykrieger.org/patient-care/outpatient-programs/cognitive_development_down_syndrome