Results from Wave 4:
A total of 739 participants were enrolled in Wave 4. Of these, 710 completed the COVID-19 survey - a 96% response rate. Of the 710 participants, 378 were female and 332 were male. A total of 133 were aged between 40-50 years, 391 were aged 50-64 years and 186 were aged over 65 years. All levels of intellectual disability were represented; 196 had mild ID, 276 had moderate ID and 188 had severe-profound ID.
There was a high rate of reported pre-existing conditions associated with poorer outcomes for COVID-19, with 371 (52%) participants having a history of cardiovascular disease and 365 (66%) participants having a history of overweight/obesity. There was also a high prevalence of certain psychiatric/neurological conditions: 209 (29.5%) participants had a history of epilepsy, and 29 (4.1%) participants had a history of dementia. A total of 86 (13%) participants reported they could not walk across a room at all. A further 61 (8.6%) participants had a history of lung disease/asthma, and 68 (9.6%) had a history of diabetes. Pre-existing mental health problems were high with 380 (53.5%) reporting a history of emotional, nervous or psychiatric disorder.
A total of 443 (62.4%) participants were tested for COVID-19 with 71 (10%) reporting COVID-19-like symptoms and 11 (2.5%) testing positive.
For those 11 participants who tested positive, the common symptoms were fatigue (N = 6, 54.5%), fever (N = 5, 45.5%), and cough (N = 3, 27.3%).
There were no instances of mortality due to COVID-19 in the sample.
People in residential care had the highest rates of testing (N = 196, 84.8%), positive tests (N = 9, 4.6%) and symptoms (N = 35, 15.2%).
Fifty-five (7.8%) participants moved from their usual home due to COVID-19, most commonly while waiting for test results (n = 20), following a period of hospitalization (n=7), or to follow isolation procedures as a precaution (n = 4).
Of those participants who had symptoms or tested positive, over three-quarters (78.7%) had plans to manage self-isolation according to guidelines. Most were able to comply with guidelines, but one-third were unable to do so.
More than half of the participants indicated stress or anxiety due to the pandemic. Participants were more likely to indicate stress or anxiety if they were female, aged under 50, having mild to moderate ID, or living independently, with family or in community group homes.
The most common cause of stress/anxiety overall was not being able to do usual activities, followed by not seeing friends/family, loneliness/isolation, and fear of getting COVID-19.
People living independently/with family were more likely to report not being able to do usual activities as a source of stress/anxiety (85%), compared to those living in community group homes (82%) or particularly residential care (69%). Those living independently/with family were less likely to report missing family as a source of stress (28%) compared to those living in residential care (44%) or community group homes (55%). Conversely, those living independently/with family were more likely to report missing friends as a source of stress (61%) than those living in residential care (34%) or community group homes (45%).
At the same time, 381 (58%) participants also indicated there had been some positive aspects to the lockdown, with the most commonly reported being trying new activities, the opportunity for more rest, better relations with staff and using technology to communicate.
There were 139 participants with Down Syndrome. These participants were more likely to have moderate ID (as opposed to mild/severe-profound), and had lower rates of some high-risk health conditions, including diabetes (3.6% in people with Down Syndrome vs 11.1% in people without Down Syndrome) and cardiovascular diseases (40.3% vs 55.3%), although they also had higher rates of other conditions, such as dementia (12.2% vs 2.1%) and overweight/obesity (68.2% vs 66.2%). A total of 69 participants with Down Syndrome were tested for COVID-19, 13 participants with Down Syndrome experienced symptoms, and 2 of these participants were hospitalized with COVID-19-like symptoms. However, no one with Down Syndrome received a positive test result for COVID-19.