Possible Causes of Regression in People with Down Syndrome during the COVID-19 Pandemic

We received a question about a man with Down syndrome in his late 30s. His family shared that he developed catatonia, was hearing people speaking in his head, and lost a significant amount of weight. The man had gotten a COVID-19 vaccine about one month before his symptoms started. His family wondered if the changes could be related to the vaccine. 

People with Down syndrome may regress, lose skills, or develop catatonia for a number of reasons. We often do not know specifically what the trigger was for the regression. It could be a medical condition (e.g., hypothyroidism or sleep apnea), psychological stress, a mental illness, a neurological condition, or many other factors. 

One entity that is being studied more in the last several years is what we call "regression syndrome." Other names have been used to describe it including "Down syndrome disintegrative disorder" and "Down syndrome regression syndrome." It tends to occur in people with Down syndrome who are 15-25 years old but certainly can occur in people younger and older than that age range. Catatonia, autoimmune conditions, and many other causes are being studied. 

An association between regression syndrome and vaccinations in general has not been found or established. We are not aware of any data linking regression syndrome to COVID-19 vaccination specifically. In addition, we are not aware of a specific link to COVID-19 infection. Both the vaccine and the infection activate the immune system. If processes of the immune system cause or contribute to regression syndrome, then the vaccine and/or infection could theoretically trigger regression. However, we do not have data that supports that conclusion currently. Research done on the COVID-19 vaccines has shown them to be extremely safe and effective at preventing severe illness from COVID-19. The Down Syndrome Medical Interest Group - USA recommends the COVID-19 vaccine for individuals with Down syndrome or other intellectual disabilities who do not have a specific contraindication to the vaccine.

Other triggers could be the effects of trauma associated with COVID-19 including:

• Being infected with the COVID-19 virus (including the stress when treatment includes a hospitalization)

• Prolonged isolation due to the necessary COVID-19 pandemic restrictions

• Loss of cognitive stimulation

• Changes in family routine and life

• Stress from near-constant broadcasting of the pandemic and other news stories

• Grief from the deaths of family and friends

All of these potential contributing causes for regression related to the COVID-19 pandemic need to be studied further. Unfortunately, we do not have definite answers at this time. COVID-19 infection and vaccinations in people with Down syndrome continue to be studied. The Trisomy 21 Research Society (T21RS) has conducted a survey  throughout the pandemic to learn more about COVID-19 in Down syndrome. Health care providers and caregivers of individuals with Down syndrome are invited to complete the survey. Findings  from the survey have been shared several times during the pandemic.

Additional information about decline in skills and regression, including strategies and treatments for addressing them, can be found in our Resource Library at this link.