Results from Wave 1:

Portrayal of Findings from Wave 1 of the IDS-TILDA Study

Portrayal of Findings from Wave 1 of the IDS-TILDA Study in Trinity College Dublin, acted by people with an Intellectual Disability

See full playlist of videos here

Demographics

A total of 753 people with an intellectual disability, representing 8.9% of the Intellectual Disability population over the age of 40 years, were randomly selected from across Ireland and consented to take part in Wave 1 of the study. Data collection was successfully completed between February 2010 and July 2011. The IDS-TILDA sample successfully recruited for Wave 1 was primarily aged 50-64 years but had participants of all ages over 40 years, male and female, and included all levels of intellectual disability and living arrangements.

Findings

Life in Families and Communities.

• Largely an unmarried group that do not have children, most are unemployed and are living in out of home placements with 63% having access to 24 hour support and the majority attending a day programme. The findings here support international concerns that societies have done a better job of increasing the community presence of people with an Intellectual Disability than facilitating opportunities to actually live within the community.
• The majority of adults had some level of contact with at least one family member but one in four reported meeting their family once a year or less and frequency of contact declined with increasing age and was less for those with a severe to profound Intellectual Disability.
• Over three quarters of adults with an Intellectual Disability reported that they never wrote, texted, emailed or used social media tools such as Facebook to contact their family or friends. Moreover, less than 60% used the telephone and they were less likely to own a mobile phone than other Irish adults.
• Older age, more severe levels of Intellectual Disability and living in residential centres often meant having fewer members in one’s social network and greater risk for social isolation.
• Approximately 70% of adults with an Intellectual Disability in Ireland did not vote in the last general election.

Most adults with an Intellectual Disability had a hobby, went on holidays or day trips, engaged in regular daytime activity and leisure pursuits and had social contacts with others. However, they reported that they seldom engaged in social activities with friends outside their home and that families had limited roles in their lives.

Physical and Psychological Health

Many in the IDS-TILDA sample, particularly those in the younger age cohorts, reported experiencing good health but there were significant concerns in terms of cardiac issues (including risk factors), epilepsy, constipation, arthritis, osteoporosis, urinary incontinence, falls, cancer, and thyroid disease.

• Younger adults with an Intellectual Disability had a much higher incidence of disease and identifiable risk factors for conditions such as coronary artery disease and stroke, than same age and older cohorts in the general population.
• A high prevalence of falls in the younger age cohorts with Intellectual Disability (24.5% for those aged 40-49 years) was comparable to fall rates reported for those in the general population aged 75 years and older. Among people with Down syndrome 13.4% reported having experienced a fracture and high incidence of hip fracture among this group; yet just 8% reported having had a DEXA scan. Women with Intellectual Disability had higher risks for many diseases, both when compared to men with an Intellecual Disability and to women in the general population.
• While health checks were high overall, access to health screenings was lower for people with severe to profound Intellectual Disability.
• There appeared to be good access to physicians and dentists for all but one in three adults with an Intellectual Disability reported that they found it difficult to make themselves understood when speaking with health professionals.
• Lower rates of hypertension were found among those with Down syndrome, despite findings that one third of this population had high cholesterol and three quarters were overweight or obese.
• Nine out of 10 participants (91%) were taking at least one (prescription or non-prescription), medicine.
• Adults with Intellectual Disability were twice as likely to have significant visual problems and at a much younger age than the general population. Persons within the severe to profound range of Intellectual Disability were less likely to have had an eyesight test. 
• Irish adults with an Intellectual Disability reported that they hardly ever engaged in vigorous physical activity. Those who did engage tended to be men in the younger age groups. However, 80% did engage in some form of physical activity, at least once a week.

The prevalence reported for mental health and emotional problems was greater among persons with an intellectual disability than in the general population with 47.5% reporting that a doctor had told them that they had an emotional, nervous or psychiatric condition. Memory impairment was reported by 15.8% of respondents with Down syndrome, considerably higher than the 3.6% for individuals with an Iintellectual Disability from other causes.
Overall, people with an Intellectual Disability reported being satisfied with their healthcare and compared to the general population, they were more likely to report a long-standing relationship with their primary doctor and other healthcare professionals (probably due to greater likelihood of having spent adult years in services, including residential care). However, more than half (56.5%) of participants reported they had never received easy to read leaflets on keeping healthy and three quarters said they had never received easy to read information leaflets on healthcare services. Despite higher levels of chronic illness and disability, older adults with an Intellectual Disability were less likely than other older adults in the general population to be admitted to a general hospital.

Access to the Community and Employment

Regardless of level of intellectual disability, the majority of people with an Intellectual Disability were reliant on staff to access programmes or employment.

• There was a high level of attendance at day programmes rather than engagement in paid employment.
• Levels of income secured through wages and disability allowances by people with an Intellectual Disability would be equated with poverty by other Irish citizens.

Many people with an Intellectual Disability did not know how much money they had available, did not collect those funds for themselves and relied upon service providers’ central funds to manage the dispersing and use of these resources.
Beliefs and Attitudes
Beliefs about and experiences of happiness, choice and ageing were examined.

• Experience of happiness, pleasure and enjoyment of life reported by people with an Intellectual Disability was comparable to reports for the general population.
• Overall, adults with an Intellectual Disability reported having a good level of choice in relation to basic day-to-day issues in their lives, such as the food they eat, clothes they wear, and how they spent their free time.
• However, three quarters (75.4%) reported having no choice in relation to where they lived and 85.5% reported that they had no choice in relation to whom they lived with.

Adults with an Intellectual Disability expressed typical concerns associated with advancing years, the main issues here being loss of family and friends, increased dependence and fear of death.

Results from Wave 2:

IDS-TILDA Wave 2 Report - Advancing Years, Different Challenges

The key findings from the 2nd Report of The Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA ), featuring Professor Mary McCarron, Dean of the Faculty of Health Sciences and PI to IDS-TILDA, and Lorraine Keating, IDS-TILDA study participant.

Portrayal of Findings from Wave 2 of the IDS-TILDA Study

Portrayal of Findings from Wave 1 of the IDS-TILDA Study in Trinity College Dublin, acted by people with an Intellectual Disability

See full playlist of videos here

Results from Wave 3

Demographics

At Wave 3, interviews were sought from all respondents who took part in any previous wave and who agreed to be contacted again. A total of 609 people took part in Wave 3 and data collection was successfully completed between October 2016 and February 2017.

Changing Demographics and Housing Mobility

• Over the 10-year period between Wave 1 and Wave 3, 32.0% (241/753) of participants confirmed a change in where they were living, with 167 people moving in the last three years.
• Of the 167 people who moved between 2014 and 2017, 46 (27.5%) had also reported a change in where they were living between 2011 and 2014.
• Movement within or to similar settings (lateral moves) were the most frequent moves made (64.7%).
• At Wave 3, 11.4% (19/167) of participants reported making a more community based move. This was a decrease from 26.7% (32/120) from Wave I to Wave 2.
• There was an increase in more supported moves at Wave 3, 24.0% (40/167), up from 13.3% (16/120) at Wave 2. Physical health changes were more likely to be reported as the main reason for these moves.
• A third of participants reported having a key to their own home. Of those who moved to a new residence, only 27.5% (46/167) reported having their own key.
• The majority of the participants who moved reported being happy following the move.

Social Participation

• Older people with intellectual disabilities continued to be more socially excluded than their counterparts in the general population; while those with severe-profound levels of intellectual disability and those living in institutional settings remain the most excluded across practically all measures.
• Overall there has been a decrease in the number of older people with intellectual disability who live in close proximity to their family members.
• Respondents with the most frequent family contact continued to be male, younger, with milder levels of intellectual disability and living in community settings; respondents with severe-profound intellectual disability and those living in institutional settings continued to have the least family contact.
• The vast majority of respondents had friends (92.4%, n=560), the most common type being a co-resident friend (71.8%, n=402); however, a majority also reported they had friends outside their home (62.0%, n=347), and a similar number reported their keyworker/support staff were their friends (62.5%, n=350).
• Just over half (56.6%, n=317) reported that they had a best friend and almost two-thirds (63.2%, n=187) said that their best friend was someone with an intellectual disability.
• Three-quarters of respondents (77.6%, n=256) had contact at least once a week with nonresident friends and a further (10.9% n=36) had monthly contact; overall the rate of regular contacts increased by 4.8% between Waves 2 and 3.
• The vast majority of older people with an intellectual disability continue to engage in a broad range of social activities and most do these activities within their local communities; while the most popular organisations were ‘Sports, Social or Leisure Club’, ‘Arts or Music’ and ‘Advocacy Group’. ‘Special Olympics’ fell from the first to fourth most popular between Waves 1 and 3.
• There was a significant drop in the rate of giving support to family between Wave 2 (17.6%, n=118) and Wave 3 (11.9% n=68); while there was a small increase in the rate of helping friends and neighbours; however, older people with an intellectual disability continued to have lower rates of providing help and support than the general older population.
• Four out of five respondents reported a sense of belonging to their local community.
• Older people with an intellectual disability continue to be dependent on others for their transport, in contrast to the general older population. Overall, 92.7% (n=523) were driven as a passenger (just one person reported driving themselves), while just 29.7% (n=145) used bus transport.
• The vast majority of respondents (96.4%, n=556) said that the day activity they described was what they had wanted to do.
• Just over a quarter of respondents felt that a lack of transport facilities in their area affected their lifestyle (25.2%, n=111), and that they would like to use more public transport (26.7%, n=106).
• Half of respondents (50.0%, n=294) reported they had not spent any full days at home in the previous week, and a further 17% (n=100) spent just one full day at home; however, 6.1% (n=36) had not left the house at all in the previous week; while most who did not leave the house for at least one day had to stay at home for reasons other than their choice.

Physical Health

• Participants continued to positively appraise their own overall health.
• There was a noted increase in chronic health conditions between Wave 1 and Wave 3.
• Doctor’s diagnosis of osteoporosis at 21% increased three fold since Wave 1; however remained lower than that objectively measured at 42% in Wave 2 of IDS-TILDA.
• There was a large increase in reported diagnosis of constipation from 17.3% in Wave 1 to 43.5% in Wave 3, with women presenting with higher prevalence (48.8%) compared to men (36.8%).
• Objectively measured overweight and obesity increased from 66% in Wave 2 to 79.7% in Wave 3 and is now similar to rates reported by TILDA for the general population.
• Despite these increases, 63.7% considered themselves just the right weight.
• Using waist circumference as an indicator of risk for metabolic conditions, 74.9% of participants in IDS-TILDA were at increased risk compared to 54% in the general ageing population.
• Cholesterol levels remained lower than TILDA findings for the general ageing population at 36.5% versus 41%. However, the results IDS-TILDA report are from participants’ files and not objectively measured as in TILDA.
• Despite this, prevalence of hypertension continued to be relatively stable with prevalence at Wave 3 of 18.7% compared to 16% in Wave 1 and also continued to be lower than the 40% level reported by TILDA.
• Falls remained high at 27%, with 28.5% reporting ≥2 fall and 12.5% reporting injurious falls.
• Polypharmacy remained high in Wave 3 at 39.5% and excessive polypharmacy at 32.7% with 47.4% of those taking 3-4 medications at Wave 2 having progressed to taking 5-9 medications (polypharmacy) at Wave 3.
• In Wave 3, 28.3% (n=171/603) of participants reported that they had no teeth at all. This represented an increase of 3% since Wave 1. More concerning was that 67.8% of IDS-TILDA Wave 3 participants with tooth loss did not receive prosthetic dentures compared with 5.3% of participants without teeth found in TILDA’s Wave 3.
• Prevalence of eye disease rose to 19.5%, with cataracts the most prevalent eye disease at 15.9%, with a higher prevalence in people with Down syndrome including at younger ages.
• Overall, there was an incidence of 4.7% of dementia (n=27) between Waves 2 and 3 in IDSTILDA.
• In Wave 3, 35.5% of people with Down syndrome had a doctor’s diagnosis of dementia, which rose from 15.6% in Wave 1, and there was further incidence of 22.5% between Waves 2 and 3.
• Dementia screening within the last two years rose from 14.5% in Wave 1 to 30.5% in Wave 3 overall and from 13.9% in Wave 1 to 61.4% in people with Down syndrome.

Mental Health

• Emotional, nervous and psychiatric conditions remained at a high prevalence, with almost 52% of participants reporting having received a doctor’s diagnosis.
• Depression, anxiety and mood disorders were the main contributors to poor mental health.
• Rates of depression and mood swings decreased from Wave 1 to Wave 3.
• The incidence of newly-diagnosed mental health conditions, from Wave 2 to Wave 3, was low at 2.0%.
• Participants with Down syndrome reported fewer mental health conditions (26.2%) than those without Down syndrome.
• Participants who self-reported were more likely to rate their mental and emotional health as excellent/very good/good (92.9%) than those with joint self/proxy (78.2%) or proxy only (70.8%) responses. This represented the highest self-rating of positive mental health to date across the three waves.
• Prevalence of depression, as measured using the Glasgow Depression Scale for people with a Learning Disability (GDS-LD), was significantly higher than that in the general population with 10% of participants reporting symptoms
• There was no significant difference in prevalence of depression between those in institutions (11.1%) and community group homes (11.3%).
• Prevalence of anxiety, as measured using the Glasgow Anxiety Scale for people with a Learning Disability (GAS-LD), was similar to that in the mainstream population with 15.1% reporting symptoms. Anxiety was more frequently reported in those living in community settings than in institutions.
• The mean score for the Energy and Vitality Index (EVI) was 68.3, similar to that reported for the general older population in Ireland.

Health Care Utilisation

• The majority of IDS-TILDA participants continued to access health services using a medical or GP card
• Private health insurance was low for people with an intellectual disability at 0.5% compared with 35.0% reported for the TILDA population.
• There was a trend for increased health service use demonstrated by increases in emergency department admissions, GP use, outpatient appointments and hospital admissions.
• There were increases in the percentage of participants reporting accessing health screening services including prostate cancer checks and breast checks.
• There was a much higher rate of flu vaccinations for the intellectual disability population (90.9% compared with 47.5% for the older general population).

Results from Wave 4

Results from the Wave 4 COVID-19 Report

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 intellectual disability, 276 had moderate intellecual disability and 188 had severe-profound intellectual disability.

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 intellectual disability, 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 intellectual disability (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.

Results from the 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’.