Healthcare and Behavior Changes for Adults With Down Syndrome 1-Year Into COVID-19.
Eric Rubenstein, Nichole Kyprianou, Prisha Sujin Kumar and 4 others
PMID 37470258WHAT IT FOUND
Caregivers of 438 adults with Down syndrome reported pandemic losses: 12% kept employment, most lost activities, and nearly half showed behavior changes, including anxiety, depression, boredom, and skill loss.
Key findings
01Of 438 adults with Down syndrome, only 12% retained the same level of employment from prepandemic to mid-2021, and 44% were not employed before or during the pandemic.
02Most adults lost activities, and nearly half had a caregiver-reported behavioral change.
03Anxiety (27.7%), depression (26.2%), and boredom (30.6%) were common behavior themes, and one in four had regression or loss of skill.
STILL TO COME
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What it does not show
The survey was convenience sampled and English-only, so it may not represent the wider Down syndrome population. Respondents were overwhelmingly White, well educated, and high-income. All information came from caregivers, not directly from adults with Down syndrome, so reports may reflect caregiver perception and caregiver stress. Data were collected at one point in time, so the survey cannot show that the pandemic caused employment loss, healthcare changes, or behavior changes. There was no comparison group of adults with other intellectual disabilities, so pandemic-related changes cannot be separated from general pandemic effects. The older age group had only 25 adults, limiting precision for age comparisons.
Declared interests
The supplied text does not include a conflict-of-interest statement. The article metadata lists Research Support, N.I.H., Extramural.
The easy way to misread this
Do not conclude that the pandemic caused the reported behavior changes or skill loss. The survey captured one point in time, relied on caregiver reports, and had no comparison group of adults with other disabilities.