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COVID-19 Sub-Study report

The key findings from this second IDS-TILDA COVID-19 survey in the areas of health and service provision, social inclusion, and mental health and well-being, are as follows.

COVID-19 testing, symptoms and outcomes

Testing for COVID-19 increased from 62.4% of all participants in survey 1 to 75.8% in survey 2. The highest rates of testing was among participants living in residential care (91.8%), which was more than double the rate of participants in independent/family residences (41.2%).

The rate of positive tests among those who were tested showed a substantial increase from just 2.5% in survey 1 (May 2020) to 12.3% in survey 2; where just 2% (one individual) living in independent/family settings tested positive, compared with 13.9% in residential care and 12.6% in community group homes.

Participants with moderate intellectual disability were significantly less likely to report testing positive (7.7%) than those with either mild (15.6%) or severe-profound (17%) intellectual disability (p=0.014).

Higher rates of testing positive were reported by residents of grouped accommodation settings (residential care and community group homes) as compared to independent/living with family.

Rates of testing and positive COVID-19 cases reported for older adults with an intellectual disability are higherthan rates forthe general population,reported by TILDA in 2021 as 6.2% tested and just 0.2% tested positive, with a further 4% suspected cases.

Reported COVID-19 like symptoms increased from 10% of participants in survey 1 to 18.2% in survey 2; with cough and fever again the two most common symptoms; compared with 44% reporting symptoms in the general older population in Ireland, where muscle/joint pain and cough were the most common symptoms.

For two-thirds of the 63 individuals who tested positive, COVID-19 symptoms lasted less than two weeks; eight participants (13.1%) had symptoms for 3-8 weeks; three participants (4.9%) had symptoms for 9-12 weeks; and one individual (1.6%) had yet to recover and had symptoms lasting more than 12 weeks; while 11.5% (7) were asymptomatic.

Hospitalisations among participants with COVID-19 like symptoms or who tested positive increased slightly from 10.7% in survey 1 to 12% in survey 2.

Of the 13 participants who were hospitalised, 11 tested positive for COVID-19 including one individual who was admitted to intensive care.

During recruitment, three IDS-TILDA participants were identified as having died and as having COVID-19 – the cause of death has not been confirmed and it is unknown if COVID-19 was a cause.

Vaccines and health behaviours

Almost all IDS-TILDA participants (99.3%) had received a COVID-19 vaccine, with mostreceiving the Oxford AstraZeneca vaccine (67.8%) or the Pfizer-BioNTech vaccine (31.9%); with 30.3% experiencing adverse side-effects from receiving the vaccine, most commonly tenderness, swelling or redness of the arm (15.9%) and feeling tired (11.6%).

Almost eight in ten participants (79.1%) received easy-read accessible information on the government guidelines or the COVID-19 vaccine, while another 18.3% received other information, and just 2.6% received no information. Among those who received the official government information,the majority found it easy to understand (56.2%, 248/441), but 24.5% (108/441) found it ‘somewhat difficult’ and 19.3% (85/441) found it ‘extremely difficulty’ to understand.

The number of people who moved from their home during the pandemic increased between survey 1 (7.8%) and survey 2 (10.7%), with isolating remaining the most common reason. Among participants who had symptoms or tested positive, 98.7% had a plan to manage self-isolation, up from 78.7% in survey 1.

Between 57.3% and 79.2% adhered to recommended infection control behaviours ‘often’ or ‘always’, compared with 74% to 98% reported by TILDA for the general older population.

One in seven participants (14.1%) started taking a new prescribed medication during this pandemic, and 15.4% changed the dose of a prescribed medication; while vitamin D was the prescribed supplement that participants started taking most during the pandemic (12.6%) - where previously 41.5% of IDS-TILDA participants reported taking some Vitamin D supplement. People with severe-profound intellectual disability (12.1%) were less than half as likely to eat less healthily during the pandemic compared with people with mild (27.8%) and moderate intellectual disability (25.4%; p<0.001).

Participants with Down syndrome (66.4%) were the group mostlikely to spend more time sitting down or being sedentary during the pandemic, and were significantly more likely to do so than participants of other aetiologies (55.3%; p=0.025).

Most participants experienced health related changes since the start ofthe COVID-19 pandemic, most commonly spending more time sitting/being sedentary (58.2%) and doing less physical activity/exercise (53.7%). Having Down syndrome was associated with being more sedentary, while living in residential care and having severe-profound intellectual disability were associated with doing less physical activity/exercise.

Around a quarter of participants experienced other health changes – including less medical care than usual, increased health problems not related to COVID-19, and overeating or eating unhealthily.

Health service utilisation

Most participants (58.2%) had not made any new healthcare appointments since the beginning of the pandemic in March 2020.

Around a fifth (18.8%) missed their usual health check during the pandemic, with those aged 65+ years (27.2%) most likely to miss their health check compared to participants aged 50-64 (17%) and 40-49 years (13.1%) (p=0.007).

There was a large reduction in face-to-face meetings with health care professionals with 42.5% -70.8% reporting having seen their health care professional ‘not at all’ or ‘not as much’ but 22.2% to 48% had increased phone/online consultations, the highest with psychiatry and clinical psychology.

Between in-person and phone/online consultations there was an overall net reduction in level of access to healthcare practitioners of 12.5 – 37.6%.

Contact with family and friends

Nine in 10 participants had less face-to-face contact with non-resident family during the pandemic. People living in residential care and community group homes were more impacted by reduced face-to-face contact with theirfamily, compared with those living independently or with family.

Reduced face-to-face contact with family may have been alleviated by an increased use of technology to speak to family, experienced by over half (55.9%) of participants. This may explain why independent/family residents were less likely to report contact using technology Eight in 10 participants had less face-to-face contact with non-resident friends; while people with mild (85.6%) and moderate intellectual disability (81.1%), were more impacted than participants with severe-profound intellectual disability (59%), who had higher proportions of co-resident friends.

Reduced face-to-face contact with friends may also have been alleviated by increased use of technology to speak to friends during the pandemic, reported by half of participants. More people with mild intellectual disability (57.6%) had increased use of technology to speak with friends, compared with less than half with moderate (46.5%), and a third with severe-profound intellectual disability (35%).

Social and community participation

A majority of participants reported a restricted lifestyle: unable to do enjoyable activities or hobbies (83.9%); separation from family or close friends (79.8%);reduced work hours or hours of day service (69.5%); religious or spiritual activities cancelled or restricted (62.8%); family celebrations cancelled or restricted (62.2%); planned travel or vaccinations cancelled (58.4%); and being unable to participate in social clubs, sports teams, or volunteering (58.2%).

A number of participants also reported: an increase in verbal arguments or conflict with other adult(s) at home (21.6%); not having the ability or resources to talk to family or friends while separated (18.9%); being unable to attend in-person funeral or religious services for a family member or friend who died (17.6%); unable to visit loved one in a care facility (11.1%); unable to be with a close family memberin critical condition (6.9%); and an increase in physical conflict with other adult(s) in home (4.8%).

More younger participants were affected by reduced work/day services, cancelled/reduced family celebrations, and cancelled travel plans; while more older participants were impacted by cancelled/restricted religious or spiritual activities.

Participants with a milder level of intellectual disability were more impacted by being unable to do their activities or hobbies; having reduced work or day service hours, participation in social clubs, sports teams and volunteering; and not attending in-person funeral services for family or friends.

Separation from family or close friends was reported most among residents of community group homes (85.8%), compared with participants living in residential care (75.3%) and independent/family settings (70.6%).

Participants living independently or with family were impacted most across a number of measures, followed by community group home residents, with those in residential care the least affected – these included measures of reduced work or day service hours; cancellation of planned travel; and reduced participation in social clubs, sports teams and volunteering. Participants with Down syndrome were more restricted (67.2%) in participating in their clubs, teams and volunteer activities, compared to 55.1% of participants with intellectual disability of other aetiologies.

Women were more affected by cancelled orrestricted religious or spiritual activities (68.8%), compared to male participants (55.7%).

Mental health and well-being

Most participants reported that their overall mental health was either excellent, very good, or good. Despite this, 69% reported they experienced stress and anxiety during the COVID19 period. This had increased from 55% who reported stress and anxiety in the first COVID19 survey.

Key sources of stress and anxiety during the lockdown were isolation, not being able to see family or friends and not being able to do usual activities.

There was little change in depressive symptom scores compared to Wave 3 reports (3 years prior) of IDS-TILDA.

Just over half (56.4%) of self-reporting participants said they felt lonely during the pandemic. For life events, a majority of participants had a change at work/day service, change in frequency of visits from family/friends, and/or a loss of leisure-time activities.

For a majority of those participants who experienced a major illness or injury, the death of a sibling or the death of a parent, these were associated with a lot of stress.

Just over 20% of participants knew someone who died during the pandemic.

Almost 90% of participants reported positive experiences during COVID-19. Frequently reported positive experiences included more rest/relaxation (63%), more/better time with staff (60.6%), more free time (50.9%), and using technology to communicate (49.4%).

Anticipated activities at the end of the pandemic were being able to see family and friends, returning to socialising, eating out and going to the pub, going on a holiday,returning to day service or work, and ‘just getting back to normal’.

Covid-19 Report