Intellectual Disability Supplement To The Irish Longitudinal Study On Ageing Research Articles

Ageing, osteoporosis and intellectual disability; risks differ, and diagnosis can be missed

AbstractBackgroundPeople with intellectual disability often present atypically for various health conditions, making it challenging to identify concerns, particularly when communication challenges are also considered. Additionally, they may face barriers to healthcare access, resulting in many conditions going unnoticed. Health screening inequities are also evident in this population, and osteoporosis, a silent condition often only diagnosed postfracture, requires screening; however, if this does not happen, it may result in unnecessary fracture. Therefore the aim of this study is to identify predictors of osteoporosis in older adults with intellectual disability and examine potential inequity in the diagnosis of the condition.MethodsThe study used data from the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS‐TILDA). Bone quality was measured using quantitative ultrasound (QUS). Logistic regression was performed to identify significant predictors of poor bone quality, including chronic health conditions, dietary intake, medication use and activity levels.ResultsOut of 575 participants who completed QUS, osteoporosis prevalence was objectively measured at 41%, with a further 33.2% measured within the osteopenic range, but less than 2 in 10 had a doctor's diagnosis of osteoporosis. Reported Dual‐Energy X‐ray Absorptiometry screening uptake was low at 18.2%. Three major predictor variables of osteoporosis and osteopenia were found significant: difficulty walking 100 yards, taking antiepileptic drugs medicines and taking proton pump inhibitors. The model achieved an overall classification accuracy of 70.8% for osteopenia and 72.5% for identifying osteoporosis.ConclusionThe study highlights the different risk factors in people with intellectual disability, the potential for missed diagnoses and the likelihood there is inadequate screening. There is an urgent need for robust risk assessment and reasonable adjustments to ensure equitable screening and targeted preventive strategies. Clinicians must consider specific concerns for this population to avoid missed diagnoses and reduce the adverse effects of osteoporosis/osteopenia, such as an increased risk of fragility fractures.

IRB challenges in multisite studies: A case report and commentary from the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA).

A shift from single to multi-site health studies enabled a range of research benefits including faster recruitment of larger and more diverse samples; increased statistical power, greater rigour, generalisability, and external reliability; and increased likelihood of impacting policy and clinical practice. However, ethical review of multi-site studies by Institutional Review Boards (IRBs) raises specific challenges compared with single site studies, with requirements to apply to multiple local IRBs increasing the burden on research, possibly endangering the integrity of the research process or inhibiting development of multi-site studies. The option of a single centralised IRB may offer a clearer, more consistent and efficient review process. This study presents a case report and commentary from 15 years engaging with IRBs in multiple sites in Ireland by the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA). It examines the ethics review process for IDS-TILDA through its first four waves. While the majority of 48 IRBs granted ethical approval within 13 weeks, six IRBs took 21-47 weeks to approve, leading to delays in data collection of up to 11 months. Despite additional review time, no changes were required to the study protocol. Therefore, a critical impact of the process was the delay in starting data collection within a small number of organisations, and reduced involvement in the study for one organisation. The ethical review process with multiple IRBs increased the degree of complexity of the process, with added bureaucracy and far greater communication required across 48 IRBs, substantially adding to the resource commitment for the review process. The relatively quick approval from the majority of IRBs was partially a result of the longitudinal study building relationships with organisations throughout multiple waves. That other health studies may not accrue this benefit supports calls for a single IRB system for multi-site health studies.

Psychotropic medicines' prevalence, patterns and effects on cognitive and physical function in older adults with intellectual disability in Ireland: longitudinal cohort study, 2009-2020.

The frequent prescribing of psychotropics and high prevalence of polypharmacy among older adults with intellectual disabilities require close monitoring. To describe change in prevalence, predictors and health outcomes of psychotropic use during the four waves (2009/2010, 2013/2014, 2016/2017, 2019/2020) of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA). Eligible participants were adults (≥40 years) with intellectual disabilities who participated in all four waves of IDS-TILDA and who reported medication use for the entire period. Differences between groups were tested using Cochran's Q test for binary variables and the McNemar-Bowker test for variables with more than two categories. Generalised estimating equation models were used to assess associations between psychotropic use, participants' characteristics and health outcomes. Across waves (433 participants) there were no significant differences in prevalence of psychotropic use (61.2-64.2%) and psychotropic polypharmacy (42.7-38.3%). Antipsychotics were the most used subgroup, without significant change in prevalence between waves (47.6-44.6%). A significant decrease was observed for anxiolytics (26.8-17.6%; P < 0.001) and hypnotics/sedatives (14.1-9.0%; P < 0.05). A significant increase was recorded for antidepressants (28.6-35.8%; P < 0.001) and mood-stabilising agents (11.5-14.6%; P < 0.05). Psychotropic polypharmacy (≥2 psychotropics) was significantly associated with moderate to total dependence in performing activities of daily living over the 10-year period (OR = 1.80, 95% CI 1.21-2.69; P < 0.05). The study indicates an increase in usage of some classes of psychotropic, a reduction in others and no change in the relatively high rate of antipsychotic use over 10 years in a cohort of older adults with intellectual disabilities and consequent risk of psychotropic polypharmacy and medication-related harm.

Examining Quality, Use and Impact of Psychotropic (Use) in older adults with intellectual disabilities (EQUIP): study protocol

Widespread, and sometimes inappropriate use of psychotropics in adults with intellectual disability has been an international concern. These medicines have been used to treat mental health conditions, but also, controversially, some types of behaviours not necessarily associated with the diagnosis or in the absence of a relevant diagnosis. Results from the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) study of older adults with intellectual disability in Ireland revealed that 60% were taking psychotropics in 2010. In the intervening decade changes in regulations, policy, and increased decongregation of people with intellectual disability have taken place likely influencing the use of psychotropics. The HSE National Clinical Programme for People with Disability (NCPDD) established in the 2020 has medicines optimisation as a key priority. Existing multi-wave data from the IDS-TILDA study and the HSE national prescribing database offers an opportunity to better understand psychotropic use and prescribing patterns. This is a novel collaboration on lived experience, research, practice and policy. The aim of this research is to examine the quality and trends of psychotropic use of older adults with intellectual disability over a ten-year period in Ireland to evaluate the effects of and to inform both practice and policy to optimise medicines use and health outcomes. Health and medication data from ten years (four waves) of the IDS-TILDA study and corresponding medicines data from the HSE-PCRS prescribing database are available. Descriptive and longitudinal analysis will examine association between long-term psychotropic use, changes in trends of use, and the impact of decongregation on medicines use. This research will inform the development of national guidance on medicines optimisation for older people with intellectual disability and has the potential to change prescribing practices and improve health and wellbeing for older people with intellectual disability.

Health and well‐being of sibling carers of adults with an intellectual disability in Ireland: Four waves of data

AbstractBackgroundAs the life expectancy of people with intellectual disability increases, they may now outlive their parents or their parents' ability to continue to care. Siblings of adults with intellectual disability often succeed their parents as primary carers. Little is known about the health and well‐being of this important cohort of carers who will be both caring for and ageing alongside their brother or sister with intellectual disability. The Carer's Study within The Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS‐TILDA) provides a unique insight into the health and well‐being of family carers of older adults with intellectual disability including sibling carers in Ireland. This article reports on the findings from waves 1, 2, 3 and 4 of the IDS‐TILDA Carer's Study.MethodsThe IDS‐TILDA Carer's Study surveys family carers of older people (aged 40 years and older) with intellectual disability on a 3‐yearly cycle. The family carers complete a self‐administered, mixed‐methods questionnaire. The qualitative data are analysed thematically, and a descriptive analysis of the quantitative data is conducted using SPSS.FindingsIn each wave, sibling carers comprised a significant proportion of the Carer's Study participants: W1 58%; W2: 61.4%; W3: 76.7%; and W4: 45.8%. The siblings were predominantly female, not in paid employment and were caring without the support of a spouse or partner. Across the four waves, siblings reported good general health. However, a high prevalence of particular conditions including back pain, aching joints and stress was also reported, and in each wave, siblings reported feeling completely overwhelmed by their care responsibilities. Although sibling carers reported that they have considered the future, only a minority have progressed to action in this regard.ConclusionsThere is evidence of the strong relational and emotional commitment by the siblings to their brother or sister with intellectual disability. However, through the four waves of data, there was also evidence of physical, mental and financial toll. An urgent need exists to identify and engage with siblings to protect their well‐being as they provide care for an increasingly ageing sibling.

Examining Quality, Use and Impact of Psychotropic (Use) in older adults with intellectual disabilities (EQUIP): study protocol

Widespread, and sometimes inappropriate use of psychotropics in adults with intellectual disability has been an international concern. These medicines have been used to treat mental health conditions, but also, controversially, some types of behaviours not necessarily associated with the diagnosis or in the absence of a relevant diagnosis. Results from the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) study of older adults with intellectual disability in Ireland revealed that 60% were taking psychotropics in 2010. In the intervening decade changes in regulations, policy, and increased decongregation of people with intellectual disability have taken place likely influencing the use of psychotropics. The HSE National Clinical Programme for People with Disability (NCPDD) established in the 2020 has medicines optimisation as a key priority. Existing multi-wave data from the IDS-TILDA study and the HSE national prescribing database offers an opportunity to better understand psychotropic use and prescribing patterns. This is a novel collaboration on lived experience, research, practice and policy. The aim of this research is to examine the quality and trends of psychotropic use of older adults with intellectual disability over a ten-year period in Ireland to evaluate the effects of and to inform both practice and policy to optimise medicines use and health outcomes. Health and medication data from ten years (four waves) of the IDS-TILDA study and corresponding medicines data from the HSE-PCRS prescribing database are available. Descriptive and longitudinal analysis will examine association between long-term psychotropic use, changes in trends of use, and the impact of decongregation on medicines use. This research will inform the development of national guidance on medicines optimisation for older people with intellectual disability and has the potential to change prescribing practices and improve health and wellbeing for older people with intellectual disability.

Recruitment and retention in longitudinal studies of people with intellectual disability: A case study of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA)

BackgroundLongitudinal study of people with intellectual disability and other difficult to reach populations requires specific recruitment and retention strategies to be successful. AimsThis paper provides a case study of participant recruitment and retention for a longitudinal study of ageing among older adults with intellectual disability in Ireland. Methods and proceduresDevelopment and implementation of strategies to recruit and retain participants with intellectual disability aged 40+ years, for a longitudinal study comprising four data collection waves over more than a decade, are reported. Recruitment and retention outcomes are assessed alongside factors of successful implementation. Outcomes and resultsA nationally representative sample of 753 individuals with intellectual disability was recruited for wave 1 of the study. Multiple retention strategies aimed to reduce barriers to participation and create a project community and study bond, underpinned by a Values Framework and commitment to PPI. After four waves over 11 years, 87.1 % of surviving participants were retained. Conclusions and implicationsSuccessful recruitment and retention of people with intellectual disabilities in longitudinal studies is possible when the approach taken is personal, flexible, and innovative; participant burden is minimised; the research team is skilled and sensitive to needs of participants; and where involvement of the study population guides development and implementation of specific and bespoke strategies.

The impact of coronavirus disease 2019 (COVID-19) on older adults with an intellectual disability during the first wave of the pandemic in Ireland.

Background: People with intellectual disability have increased risk of exposure to and adverse outcomes from coronavirus disease 2019 (COVID-19).They also face challenges to mental health and well-being from COVID-19-related social restrictions and service closures. Methods: Data from a supplemental COVID-19 survey from the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) (n=710) was used to assess outcomes from the first infection wave of COVID-19 among adults with intellectual disability aged 40+ years in Ireland. Data was gathered on testing, for symptoms and outcomes; procedures to manage COVID-19; and both stress/anxiety and positive experiences during the pandemic. Demographic and health-related data from the main IDS-TILDA dataset was included in analyses. Results: High rates were identified of health conditions associated with poorer COVID-19 outcomes, including overweight/obesity (66.6%, n=365), high cholesterol (38.6%, n=274) and cardiovascular disease (33.7%, n=239). Over half (53.5%, n=380) reported emotional, nervous or psychiatric disorders. Almost two-thirds (62.4%, n=443) were tested for COVID-19, with 10% (n=71) reporting symptoms and 2.5% (n=11) testing positive. There were no instances of COVID-19 related mortality. Common symptoms included fatigue, fever, and cough. Some participants (7.8%, n=55) moved from their usual home, most often to isolate (n=31) or relocate to a family home (n=11). Three-quarters (78.7%) of those who were symptomatic or who tested positive had plans to manage self-isolation and two-thirds were able to comply with guidelines. Over half (55%, n=383) reported some COVID-19 related stress/anxiety; and a similar proportion reported positive aspects during this period (58%, n=381). Conclusions: Our data suggests that people with intellectual disability avoided the worst impacts of COVID-19 during the first infection wave in Ireland. Nevertheless, participants' health profiles suggest that this population remains at high risk for adverse infection outcomes. Repeated measures are needed to track health and well-being outcomes across multiple infection waves.

The impact of COVID-19 on people ageing with an intellectual disability in Ireland: Protocol for a follow-up survey.

Background: The COVID-19 pandemic and associated lockdowns have had a dramatic impact on many people, but individuals with an intellectual disability, given the prevalence of congregate living and high levels of co-morbid conditions, may be particularly vulnerable at this time. A prior initial survey of participants of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) found that, despite a majority of participants being tested, only a small proportion had tested positive for COVID-19. Furthermore, despite some reporting positive aspects to the lockdown, a similar proportion were experiencing stress or anxiety during the pandemic. The pandemic and lockdowns have continued, and it is possible that experiences and consequences have changed over time. Aim: To explore over time and in greater depth the impact of COVID-19 and associated lockdowns and to further establish rates of infection, rates of vaccination and participants' experiences. Methods: A structured questionnaire for people with intellectual disability participating in the IDS-TILDA longitudinal study, to be administered by telephone/video in summer 2021. Where participants are unable to respond independently, a proxy respondent will be invited to either assist the participant or answer questions on their behalf. This questionnaire will include questions from the first COVID-19 questionnaire, with extra questions assessing "long COVID" (i.e. COVID-19 lasting for 12 weeks or longer), infection control behaviours, changes in mental health, social contacts and loneliness, frailty, healthcare, and incidence of vaccination. Impact: The results of this survey will be used to inform healthcare provision for people with intellectual disability during the latter stages of the lockdown and into the future.

The impact of COVID-19 on people ageing with an intellectual disability in Ireland: Protocol for a follow-up survey

Background: The COVID-19 pandemic and associated lockdowns have had a dramatic impact on many people, but individuals with an intellectual disability, given the prevalence of congregate living and high levels of co-morbid conditions, may be particularly vulnerable at this time. A prior initial survey of participants of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) found that, despite a majority of participants being tested, only a small proportion had tested positive for COVID-19. Furthermore, despite some reporting positive aspects to the lockdown, a similar proportion were experiencing stress or anxiety during the pandemic. The pandemic and lockdowns have continued, and it is possible that experiences and consequences have changed over time. Aim: To explore over time and in greater depth the impact of COVID-19 and associated lockdowns and to further establish rates of infection, rates of vaccination and participants’ experiences. Methods: A structured questionnaire for people with intellectual disability participating in the IDS-TILDA longitudinal study, to be administered by telephone/video in summer 2021. Where participants are unable to respond independently, a proxy respondent will be invited to either assist the participant or answer questions on their behalf. This questionnaire will include questions from the first COVID-19 questionnaire, with extra questions assessing “long COVID” (i.e. COVID-19 lasting for 12 weeks or longer), infection control behaviours, changes in mental health, social contacts and loneliness, frailty, healthcare, and incidence of vaccination. Impact: The results of this survey will be used to inform healthcare provision for people with intellectual disability during the latter stages of the lockdown and into the future.

The impact of coronavirus disease 2019 (COVID-19) on older adults with an intellectual disability during the first wave of the pandemic in Ireland

Background: People with intellectual disability have increased risk of exposure to and adverse outcomes from coronavirus disease 2019 (COVID-19).They also face challenges to mental health and well-being from COVID-19-related social restrictions and service closures. Methods: Data from a supplemental COVID-19 survey from the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) (n=710) was used to assess outcomes from the first infection wave of COVID-19 among adults with intellectual disability aged 40+ years in Ireland. Data was gathered on testing, for symptoms and outcomes; procedures to manage COVID-19; and both stress/anxiety and positive experiences during the pandemic. Demographic and health-related data from the main IDS-TILDA dataset was included in analyses. Results: High rates were identified of health conditions associated with poorer COVID-19 outcomes, including overweight/obesity (66.6%, n=365), high cholesterol (38.6%, n=274) and cardiovascular disease (33.7%, n=239). Over half (53.5%, n=380) reported emotional, nervous or psychiatric disorders. Almost two-thirds (62.4%, n=443) were tested for COVID-19, with 10% (n=71) reporting symptoms and 2.5% (n=11) testing positive. There were no instances of COVID-19 related mortality. Common symptoms included fatigue, fever, and cough. Some participants (7.8%, n=55) moved from their usual home, most often to isolate (n=31) or relocate to a family home (n=11). Three-quarters (78.7%) of those who were symptomatic or who tested positive had plans to manage self-isolation and two-thirds were able to comply with guidelines. Over half (55%, n=383) reported some COVID-19 related stress/anxiety; and a similar proportion reported positive aspects during this period (58%, n=381). Conclusions: Our data suggests that people with intellectual disability avoided the worst impacts of COVID-19 during the first infection wave in Ireland. Nevertheless, participants’ health profiles suggest that this population remains at high risk for adverse infection outcomes. Repeated measures are needed to track health and well-being outcomes across multiple infection waves.

The impact of COVID-19 on people ageing with an intellectual disability in Ireland: Protocol for a follow-up survey.

Background: The COVID-19 pandemic and associated lockdowns have had a dramatic impact on many people, but individuals with an intellectual disability, given the prevalence of congregate living and high levels of co-morbid conditions, may be particularly vulnerable at this time. A prior initial survey of participants of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) found that, despite a majority of participants being tested, only a small proportion had tested positive for COVID-19. Furthermore, despite some reporting positive aspects to the lockdown, a similar proportion were experiencing stress or anxiety during the pandemic. The pandemic and lockdowns have continued, and it is possible that experiences and consequences have changed over time. Aim: To explore over time and in greater depth the impact of COVID-19 and associated lockdowns and to further establish rates of infection, rates of vaccination and participants' experiences. Methods: A structured questionnaire for people with intellectual disability participating in the IDS-TILDA longitudinal study, to be administered by telephone/video in summer 2021. Where participants are unable to respond independently, a proxy respondent will be invited to either assist the participant or answer questions on their behalf. This questionnaire will include questions from the first COVID-19 questionnaire, with extra questions assessing "long COVID" (i.e. COVID-19 lasting for 12 weeks or longer), infection control behaviours, changes in mental health, social contacts and loneliness, frailty, healthcare, and incidence of vaccination. Impact: The results of this survey will be used to inform healthcare provision for people with intellectual disability during the latter stages of the lockdown and into the future.

The impact of coronavirus disease 2019 (COVID-19) on older adults with an intellectual disability during the first wave of the pandemic in Ireland

Background: People with intellectual disability have increased risk of exposure to and adverse outcomes from coronavirus disease 2019 (COVID-19).They also face challenges to mental health and well-being from COVID-19-related social restrictions and service closures. Methods: Data from a supplemental COVID-19 survey from the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) (n=710) was used to assess outcomes from the first infection wave of COVID-19 among adults with intellectual disability aged 40+ years in Ireland. Data was gathered on testing, for symptoms and outcomes; procedures to manage COVID-19; and both stress/anxiety and positive experiences during the pandemic. Demographic and health-related data from the main IDS-TILDA dataset was included in analyses. Results: High rates were identified of health conditions associated with poorer COVID-19 outcomes, including overweight/obesity (66.6%, n=365), high cholesterol (38.6%, n=274) and cardiovascular disease (33.7%, n=239). Over half (53.5%, n=380) reported emotional, nervous or psychiatric disorders. Almost two-thirds (62.4%, n=443) were tested for COVID-19, with 10% (n=71) reporting symptoms and 2.5% (n=11) testing positive. There were no instances of COVID-19 related mortality. Common symptoms included fatigue, fever, and cough. Some participants (7.8%, n=55) moved from their usual home to isolate, most often (n=31) or relocate to a family home (n=11). Three-quarters (78.7%) of those who were symptomatic or who tested positive had plans to manage self-isolation and two-thirds were able to comply with guidelines. Over half (55%, n=383) reported some COVID-19 related stress/anxiety; and a similar proportion reported positive aspects during this period (58%, n=381). Conclusions: Our data suggests that people with intellectual disability avoided the worst impacts of COVID-19 during the first infection wave in Ireland. Nevertheless, participants' health profiles suggest that this population remains at high risk for adverse infection outcomes. Repeated measures are needed to track health and well-being outcomes across multiple infection waves.

The relationship between antiepileptic drug load and challenging behaviors in older adults with intellectual disability and epilepsy

Antiepileptic drugs (AEDs) may affect mood and behavior in people with epilepsy and intellectual disability. A high AED load, derived from AED polytherapy and/or high doses of AEDs, has been suggested to be a risk factor for behavioral side effects. Data were drawn from Wave 3 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA). The Behavior Problems Inventory Short Form (BPI-S) was used to assess challenging behaviors. AED load was calculated and median AED loads obtained. Non-parametric tests and binary logistic regression were performed to determine the relationship between AED load and challenging behaviors. Of participants with a reported diagnosis of epilepsy who were taking a regular AED and had completed BPI-S (n = 142), 62.7% (n = 89) exhibited challenging behaviors. Challenging behavior was found to be more prevalent in those with more severe levels of intellectual disability (p < 0.001). Aggressive/destructive behavior and stereotyped behavior were significantly more likely in participants living in residential/campus settings. For participants with a severe/profound intellectual disability, a significantly higher median AED load was found for participants exhibiting aggressive/destructive behavior and self-injurious behavior (SIB) compared to participants not exhibiting these behaviors, indicating a high AED load may contribute to some behavioral problems in this population group. However, many factors can influence behavioral outcomes, creating difficulties in determining those that are associated and the nature of the association. Careful monitoring of AED load, together with increased vigilance for breakthrough behavioral issues is essential for dealing with these complex cases. Larger studies are needed to account for the potential confounding factors.

Antiepileptic drugs, occurrence of seizures and effect of co-administration of potential seizure threshold-lowering psychotropic drugs in adults with intellectual disability who have epilepsy.

This study explored antiepileptic drug use, frequency of seizures, and the effect of psychotropic drugs with the potential to lower the seizure threshold in persons diagnosed with epilepsy and intellectual disability. Data for this study were drawn from Wave 3 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA). Psychotropic drugs were categorised for potential seizure threshold-lowering risk (low, moderate, high). Binary logistic regression was performed to identify factors associated with seizure frequency. Epilepsy prevalence was 35.8% (n=196), of which 57.7% reported a mental health condition. Participants with seizure data classified as taking at least one moderate-/high-risk medication were significantly less likely to experience a seizure compared to participants taking no potential seizure threshold-lowering medication. Psychotropic drugs recommended to be avoided or used with caution did not provoke increased seizure frequency in this cohort.

The prevalence, awareness, treatment, and control of hypertension in older adults with an intellectual disability in Ireland: a cross sectional study.

Hypertension is a leading risk factor for cardiovascular disease, accounting for almost 50% of ischaemic heart disease mortality. This study aims to identify the prevalence, awareness, treatment, and control of hypertension and their predictors in older adults with an intellectual disability (ID). This cross-sectional study utilized data from the ID Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA). Participants were drawn from the nationally representative sample and included those who completed the self/informant report measures, in addition to objective blood pressure (BP) measurement. From the 551 individuals with ID, aged ≥40 years, hypertension prevalence was 35.2% [95% confidence interval (CI) 31.2-39.2%]. Of those with hypertension, 44.3% (95% CI 37.1-51.5%) were aware of their hypertensive status, and 64.2% (95% CI 57.3-71.1) were taking antihypertensive medication. Among those on treatment, 70.8% (95% CI 61.8-78.2%) had their BP controlled to below 140/90 mmHg. Significant predictors of awareness were age (P = 0.036) and level of ID (P = 0.004), predictors of treatment were age (P = 0.002), level of ID (P = 0.019), and diabetes (P = 0.001). Both diabetes and female gender were predictors of control of hypertension (P = 0.013 and P = 0.037, respectively). The prevalence of hypertension in older adults with ID was lower than reports for the general Irish population, with overall levels of treatment and control, when identified, higher in the ID population. There was under-treatment and lower levels of awareness among those with more severe ID, which requires addressing. The finding, that when diagnosed, people with ID respond well to treatment should encourage addressing the under-treatment found here.

Making Reasonable Adjustment to Enable and Support People With Intellectual Disability Engage in Objective Health Measures in a Research Study—The Health Fair in the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing

Abstract This observational cross-sectional study presents methods employed in designing and undertaking a suite of eight health assessments, purposely named The Health Fair, as part of Wave 2 (2014) of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) study. Overall, 604 persons of all levels of intellectual disability, aged 40 years and above and in different living circumstances, participated. The Health Fair process was mobile and overcame barriers such as communication challenges or access that people with intellectual disability face. This protocol could support researchers and practitioners in clinical practice to guide and improve the health assessment of people with intellectual disability to facilitate a better understanding of their health pathways and improve health care delivery and services.

The complexity of tooth brushing among older adults with intellectual disabilities: Findings from a nationally representative survey

BackgroundAdults with Intellectual and Developmental Disabilities (IDD) have poor oral-hygiene and oral health. A better understanding of their oral-hygiene behaviours will inform interventions to improve personal and population health. Objective/hypothesisTo identify the oral hygiene behaviours undertaken by and on behalf of older people with IDD. MethodsCross-sectional survey from the third wave of the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA) undertaken 2016–2017. Frequency of oral hygiene, level of support, type of brush used and for a subsample, brushing technique are reported. Bivariate analyses adopted Pearson’s Chi Square test of independence. ResultsThe sample (N = 609) had a mean age of 59.7 years (SD = 8.8); 88.4% (n = 536) reported tooth cleaning at least daily. The majority who had teeth to clean reported using standard toothbrushes (75.9%), with a minority using electric (9.6%) or modified toothbrushes (5.9%). Of the 505 who reported cleaning teeth, 285 (48.5%) did not report any assistance, 127 (25.2%) were totally dependent on another person and 133 (26.3%) reported assisted cleaning, of whom 40.0% (n = 52) were Supervised, reminded or encouraged, 27.7% (n = 36) reported Hand-on-Hand and 23.8% (n = 31) reported Brush-after-Brush techniques. An association was detected between assistance and type of toothbrush used (p < 0.001). None was detected between assistance and frequency-of-brushing (p > 0.05). ConclusionsOlder adults with IDD present with a complex mix of supports, toothbrushes and techniques. This highlights the complexity of oral-hygiene behaviour for this population and indicates the need for bespoke individual care plans and complexity in interventions to improve population oral-hygiene.

Medication burden and frailty in older adults with intellectual disability: An observational cross-sectional study.

Recently, efforts have been made to quantify frailty among older adults with intellectual disability (ID). Medication exposure is associated with frailty among older adults without ID. However, there is little research on this association among older adults with ID. The aim of this study was to examine specifically in people with ID the association between frailty and medication exposure, including anticholinergic and sedative medication exposure. Data were drawn from Wave 2 (2013/2014) of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA), a nationally representative study of older adults with ID in Ireland. A modified version of Fried's frailty phenotype was constructed. Drug burden measures were polypharmacy, Drug Burden Index (DBI), Anticholinergic Cognitive Burden (ACB) and Sedative Load Model. Multinomial logistic regression was used to calculate odds ratios (ORs) and identify associations between frailty and drug burden. This study included 570 participants with ID. Excessive polypharmacy (use of ≥10 medications) was significantly associated with being pre-frail (P = .017; OR = 2.56; 95% confidence interval [CI] 1.19-5.50) and frail (P < .001; OR 7.13; 95% CI 2.81-18.12), but DBI, ACB or Sedative Load score were not significantly associated with frailty status (P > .05). This is the first study to examine frailty and its association with medication use including anticholinergic and sedative medication burden among older adults with ID. Further research is required to investigate frailty as measured by other frailty models in relation to medication burden in older adults with ID.

Communication difficulties in adults with Intellectual Disability: Results from a national cross-sectional study

BackgroundPeople with an intellectual disability (ID) are vulnerable to communication impairments, with consequences for employment, education, and social participation. AimsTo identify the communication skills of a population of adults (40+ years) with ID and explore relationships between individual and environmental factors and communication skills. Methods and proceduresData from a sample of 601 adults with ID was selected from the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA) addressing communication characteristics, demographics, co-morbidities, challenging behaviours, and social participation. A multiple regression model and a decision-making tree were built to identify factors related to communication abilities. Outcomes and resultsOverall, 57.9 % of participants experienced communication difficulties, with 23.5 % reporting severe difficulties. Only 75.1 % of participants communicated verbally; more than half found communicating with professionals and non-familiar partners difficult. Level of ID, low social participation, challenging behaviours, and diagnosis of Down syndrome were significantly associated with communication difficulties. Conclusions and implicationsCommunication difficulties are prevalent in adults with ID and are influenced by complex factors. Interventions to enhance interaction and quality of life of individuals with ID should consider communication opportunities, needs, and barriers.