What is Down Syndrome Regression Disorder?
Down Syndrome Regression Disorder (DSRD) is a condition where a person with Down syndrome loses skills and abilities they had previously learned. The changes are usually sudden and can happen over a few weeks. The person may experience a sudden change in communication, social interaction or self-care skills. They may also experience changes in behaviour, mood and thinking.
DSRD is rare and not all people with Down syndrome experience DSRD. When DSRD occurs it is usually between the age of 10 and 30 years.
When someone with Down syndrome shows signs of regression, it is often severe and affects the quality of life of both the person and their caregivers.
You may notice some of these changes:
- Loss of speech
- Changes in eating, drinking or sleep patterns
- Needing more help with showering, dressing, toileting or moving
- Social withdrawal, decreased eye contact or becoming agitated
- Changes in mood like anxiety, depression or irritability
- Movement changes like slowness, repeated movements, freezing or difficulty starting a movement
- Psychiatric changes like hallucinations or disorganised thoughts.
Find out more about Down Syndrome Regression Disorder in this Update for Families.
When to talk to your doctor
Early intervention is important. If you notice sudden changes and a loss of skills within a 12 week period, talk to your doctor.
There are guidelines and symptom checklists to help with making a diagnosis.You can use a DSRD checklist to help you describe the changes.
You can also show your doctor videos of the person before they started losing skills, and compare these with videos of new or unusual behaviours.
People may develop DSRD due to different reasons. Doctors will need to eliminate a range of possible medical or environmental reasons for the regression. There are different treatment options depending on what the cause may be.
Additional resources
Here is a checklist from the US National Down Syndrome Society.
You may want to show your doctor this discussion paper on the assessment and diagnosis of Down Syndrome Regression Disorder.
NDIS supports
Extra supports may be needed in the first 3-6 months. You may want to think about what supports you will need and how you will document these for NDIS funding.
What can I do?
Talk to your doctor if you notice a sudden change or loss of skills over a few weeks.
For more information and support
Talk to your Down syndrome association to discuss information and supports for the person, and for family and caregivers.
For more information you can also join a Facebook peer support group. Visit the Regression in Down syndrome Australia Facebook page or the private Facebook Group.
Can you help with our research?
You can assist us to provide evidence for the need for more research into DSRD.
Please contribute to a pilot research project being undertaken by Down Syndrome WA to gather sufficient pilot information to support further research. Complete this survey: https://forms.office.com/r/L07pN7Z9ts
Thank you to Cassandra Hughes, CEO of Down Syndrome WA who has taken a lead in DSRD in Australia on behalf of Down Syndrome Australia and its Members.
Contact your state association
Helpful resources
Resources
Find out more about DSRD with these useful:
- guides
- checklists
- research articles.
Webinars
Find out more about DSRD with these useful:
- webinars
- videos
- conference presentations.