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People with intellectual disabilities (ID) have high levels of sedentary behaviour and co-morbid health conditions. There is also increased longevity for this group which is an incredible success story but one which also poses challenges... more
People with intellectual disabilities (ID) have high levels of sedentary behaviour and co-morbid health conditions. There is also increased longevity for this group which is an incredible success story but one which also poses challenges to the health system. For the first time, the mainstream health system needs to plan for and address age related health needs of people with ID. It also demands consideration of age-appropriate health-promotion efforts to support this ageing population with life-long disability. A physical activity programme, People with Intellectual Disability as Physical Activity Leaders (PPALs), was co-designed and co-developed with older adults (40+ years) with intellectual disability (ID). The process, content and outcomes of the pilot are presented in this paper. Expertise from three sectors: non-statutory academic and people with intellectual disabilities and their supporters worked collaboratively for successful completion of the project.
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This literature review was designed to establish the effects of sedentary behaviour on the physical health of adults with an intellectual disability. Sedentary behaviour is defined as any waking behaviour characterized by an energy... more
This literature review was designed to establish the effects of sedentary behaviour on the physical health of adults with an intellectual disability. Sedentary behaviour is defined as any waking behaviour characterized by an energy expenditure of ≤1.5 METs while in a sitting, lying or reclining posture. An extensive search was executed in six databases: EMBASE, Medline, CINAHL, PsycINFO, ASSIA and Web of Science. Following screening, 18 articles remained for inclusion in the review. A thematic analysis using the Braun and Clarke six step process resulted in the identification of seven broad health areas. Studies showed a prevalence of obesity, multimorbidity and metabolic syndrome as well as elevated levels of sedentary behaviour in adults with an intellectual disability. This literature review demonstrated that sedentary behaviour could be a contributor to the poor health which is common in adults with an intellectual disability. However to date the body of evidence does not confir...
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BackgroundThis study examines overweight/obesity and chronic health conditions (CHCs) in older people with intellectual disability (ID).MethodsData for this cross‐sectional observational study emanated from Wave 2 of the Intellectual... more
BackgroundThis study examines overweight/obesity and chronic health conditions (CHCs) in older people with intellectual disability (ID).MethodsData for this cross‐sectional observational study emanated from Wave 2 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing, a longitudinal study assessing the health and well‐being of older Irish adults with ID aged ≥40 years across all levels of ID. Participation involves an interview process and collation of objective health measures. In this study, body mass index (BMI) (n = 572), used as a measure of weight status, was examined with clustered doctor's diagnosed CHCs. Descriptive analysis was conducted where counts (n) and proportions (%) were used to summarise the variables univariately, while cross‐tabulations were used for bivariate summary into counts and proportions. With overweight/obesity prevalence established and patterns described using logistical regression, Pearson's chi‐squared test was ...
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People with intellectual disability present with higher levels of chronic conditions and multi-morbidity, greater complex health needs and earlier mortality as compared to their peers without identified life-long disabilities. The growing... more
People with intellectual disability present with higher levels of chronic conditions and multi-morbidity, greater complex health needs and earlier mortality as compared to their peers without identified life-long disabilities. The growing and international evidence addressed here confirms that obesity, poor cardiovascular health, osteoporosis, falls and fractures, gastrointestinal conditions, sensory impairment, oral health compromises, increased dementia prevalence and polypharmacy concerns are further compromising that health. That supporting the health of persons with intellectual disability is not universally part of the core training of healthcare professionals is a further concern. Attention to such education will result in greater awareness and knowledge will be key to improving the health and well-being of people with intellectual disability.
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PurposeRecently, 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... more
PurposeRecently, 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.MethodsData 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 burd...
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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... more
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 opp...
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Background: People with an intellectual disability are more likely to experience frailty earlier in life and with greater severity compared to the general population. There is growing consideration of determinants of frailty and... more
Background: People with an intellectual disability are more likely to experience frailty earlier in life and with greater severity compared to the general population. There is growing consideration of determinants of frailty and identifying factors which may influence the change in frailty status over time. The objective of this review was to investigate factors associated with the progression of frailty over time among adults with an intellectual disability. Methods: A systematic review of literature was conducted using PRISMA guidelines to identify studies reporting factors associated with transitions and trajectories in deficit accumulation frailty among adults with an intellectual disability. The following eligibility criteria was used: defined frailty as deficit accumulation; longitudinal design; reported at least one individual characteristic associated with change in frailty status; sample was people with an intellectual disability aged ≥18 years; English language. No limitat...
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A growing number of adults with intellectual disabilities (ID) are reaching old age, however, little is known about epidemiology of problem behaviours (PBs) in this population. The aim was to identify the prevalence and associated factors... more
A growing number of adults with intellectual disabilities (ID) are reaching old age, however, little is known about epidemiology of problem behaviours (PBs) in this population. The aim was to identify the prevalence and associated factors of PBs among older adults with ID in Ireland. Data was generated from Wave 2 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA), a nationally representative sample of adults with ID aged ≥40. Data on PBs was available for 683 (98.3%) of individuals. Over half (53%; n = 362) reported displaying any PB (verbal aggression, physical aggression, destruction, self-injury, or "other" PB). Multivariate analyses indicated PBs were independently associated with moderate or severe/profound ID, living in a community group home or residential centre, experiencing a greater number of life events in the last year, taking psychotropic medication, and reporting a doctor's diagnosis of a psychiatric problem....
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BACKGROUND Longitudinal study of people with intellectual disability and other difficult to reach populations requires specific recruitment and retention strategies to be successful. AIMS This paper provides a case study of participant... more
BACKGROUND Longitudinal study of people with intellectual disability and other difficult to reach populations requires specific recruitment and retention strategies to be successful. AIMS This 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 PROCEDURES Development 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 RESULTS A 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 IMPLICATIONS Successful 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.
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Globally between 30-40% of all osteoporotic fractures occur among men, with a quarter of all hip fractures, the most serious complication of osteoporosis, occurring in men. Among men of 50 years of age or older, osteoporotic fracture risk... more
Globally between 30-40% of all osteoporotic fractures occur among men, with a quarter of all hip fractures, the most serious complication of osteoporosis, occurring in men. Among men of 50 years of age or older, osteoporotic fracture risk reaches an alarming 20%. What is of great concern is that associated mortality is greater among men when compared with women. For hip fractures specifically, mortality for men is two to three times that in women which may be attributed to the fact that osteoporosis is often considered a “women’s disease”. Of great concern is that there is a paucity of bone health investigation among men with intellectual disability. In the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing, objective bone status of 244 men was measured using a quantitative ultrasound. Participant’s also self-reported doctor’s diagnosis of health conditions including osteoporosis, medication and fracture history with the assistance of key workers/family. Et...
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The objectives of this study were to describe the reported dentate status and complete denture use of older people with intellectual disability (ID) and compare with those of older people in the general population in Ireland. The first... more
The objectives of this study were to describe the reported dentate status and complete denture use of older people with intellectual disability (ID) and compare with those of older people in the general population in Ireland. The first wave of the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA) study provides opportunity to measure edentulism and complete denture use in a nationally representative sample of older people with ID in Ireland. Data drawn from the first wave of IDS-TILDA were matched using propensity score matching with data from The Irish Longitudinal Study on Ageing (TILDA), a study among older adults in Ireland. All IDS-TILDA variables showing significant association (P < 0.05) with edentulism were entered into a regression model to identify predictors of edentulism. The proportion of the 478 IDS-TILDA participants with no teeth was higher (34.1 percent) than the proportion of participants with no teeth in the 478 matched TILDA participants (14.9 percent). Only age was predictive of edentulism among older adults with ID. Edentulism was prevalent earlier for those with ID. Notably, 61.3 percent of edentulous older people with ID were without dentures. Older people with ID are more likely to be edentulous than those without ID in Ireland and when they lose their teeth, they are unlikely to use dentures. This suggests a need for targeted measures to maintain the teeth of this group and, in the short term, the provision of replacement teeth in this population, where indicated.
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To investigate dental attendance patterns and reasons for nonattendance among older adults with intellectual disabilities (ID) in Ireland. A cross-sectional survey of quantitative data and text analysis of qualitative data drawn from a... more
To investigate dental attendance patterns and reasons for nonattendance among older adults with intellectual disabilities (ID) in Ireland. A cross-sectional survey of quantitative data and text analysis of qualitative data drawn from a nationally representative sample of 753 people with ID over 40 years of age in Ireland. Participants were considered as regular or irregular dental attenders for analysis of quantitative data. Text analysis grouped open-ended responses for analysis. There were slightly more females. Mean age was 54.1 years (SD = 8.8). Almost half had moderate ID. A majority (86.5%) of respondents attended dental services within the last 2 years. Age and type of residence were associated with frequency of attendance (p < .01), as were dentate status and reported oral problems (p < .001). Text analysis revealed a lack of perceived need as a reason for not attending regularly. Older people with ID in Ireland report a very high level of regular dental attendance. Irregular attenders did not attend because they saw no need. There is a need to further study the importance of regular dental attendance for this population.
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Research Interests: Gerontology, Aging, Intellectual Disability, Medicine, Ireland, and 15 moreHumans, Chronic Disease, Female, Male, Lung Diseases, Developmental disabilities, Mental Disorders, Aged, Middle Aged, Longitudinal Studies, Adult, Cardiovascular Diseases, Gastrointestinal Diseases, Eye Diseases, and Joint diseases
Background Adults with intellectual disability (ID) are known to have poor dietary habits and high rates of obesity. This population is thus at high risk for developing chronic conditions. Moreover, the process of de-institutionalisation... more
Background Adults with intellectual disability (ID) are known to have poor dietary habits and high rates of obesity. This population is thus at high risk for developing chronic conditions. Moreover, the process of de-institutionalisation is changing the way adults with ID are leading their lives and as this is a more recent phenomenon the effects of more independent living on dietary habits are largely unknown. This study provides a detailed account of the nutritional habits of older people (age 40+) with intellectual disability (ID) in Ireland. Methods The data was collected as part of the first wave of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS TILDA) on 753 persons with mild, moderate, severe and profound ID, to better understand their dietary habits. IDS-TILDA is a multi-wave national longitudinal study of older adults with ID. This analysis examined overall intake and variations in intake of food and beverages by age, gender, place of residence, level of ID and BMI. A multivariable analysis is currently being carried out. Results Overall, carbohydrate, dairy and meat intake were broadly in keeping with recommended guidelines although milk intake was poor (38% reporting never or rarely drinking milk). Fruit intake was also poor, (25% reporting eating two or more portions per day), although 50% of all participants reported drinking fruit juice daily. One-third of participants reported eating more than one portion of vegetables per day. Age and gender had little effect on nutritional habits. Preliminary analysis showed that those with mild/moderate ID were more likely eat more bread (p < 0.001), eat less meat (p < 0.05), vegetables (p < 0.05) and dairy products (p < 0.05) than those with severe or profound ID. They were also more likely to be obese (p < 0.05) and much more likely to live independently or with family (p < 0.001) reflecting greater autonomy in their food choices. Conclusion The study demonstrated important differences in dietary habits between those with mild /moderate ID who were much more likely to live independently or with family compared to those with severe/profound ID who were more likely to be in residential care. It highlighted a number of areas where the dietary habits of older adults with ID could be improved. As the data provides detailed analysis on the dietary habits of a national sample of older people with ID for the first time, it will inform the development of nutritional policy advice for this group of people and their carers.
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The benefits of being in employment are well documented; however, underemployment is a critical issue for people with intellectual disability (ID). Some individuals perceive themselves as being in employment when in fact they are... more
The benefits of being in employment are well documented; however, underemployment is a critical issue for people with intellectual disability (ID). Some individuals perceive themselves as being in employment when in fact they are attending a non-work site such as a day service. The impact that this perception of employment has on other areas in life has not been investigated and research into this area could have implications for both policy makers and service providers. The first wave of the intellectual disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) included a series of questions on employment that yielded data for a representative sample of 753 participants with intellectual disability aged 40 and over randomly selected from Ireland&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39;s National Intellectual Disability Database (NIDD). Overall, 6.6% of the population were in real paid employment, 7.4% in perceived employment, 12% in sheltered employment and 73.5% were unemployed. Differences were identified between these two groups in relation to social activities, levels of depression and self-rated health. Further investigation is needed into the area of perceived employment.
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1 The Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS- TILDA) is a large-scale, nationally representative study of people aged 40 years and over with an intellectual disability (ID) in Ireland. It is the... more
1 The Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS- TILDA) is a large-scale, nationally representative study of people aged 40 years and over with an intellectual disability (ID) in Ireland. It is the most comprehensive study on ageing in persons with intellectual disability ever carried out in Ireland, and the first of its kind internationally, to be conducted in tandem with a national population study on ageing. IDS-TILDA will provide much needed data on the health, social, economic and environmental circumstances of 753 people as they grow older and on how their circumstances change over time. At Wave 1, the National Intellectual Disability Database (NIDD) provided the sampling frame for the study and a nationally representative group of 753 respondents with an ID over the age of 40 years were successfully enrolled in the study. At Wave 2, all living Wave 1 respondents were invited to complete a pre- interview questionnaire (PIQ) and also unde...
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Background: Sedentary behaviour (SB), which is characterised by low levels of energy expenditure, has been linked to increased cardio-metabolic risks, obesity and mortality, as well as cancer risk. No firm guidelines are established on... more
Background: Sedentary behaviour (SB), which is characterised by low levels of energy expenditure, has been linked to increased cardio-metabolic risks, obesity and mortality, as well as cancer risk. No firm guidelines are established on safe levels of SB. Adults with an intellectual disability (ID) have poorer health than their counterparts in the general population with higher rates of multi-morbidity, inactivity, and obesity. The reasons for this health disparity are unclear however it is known that SB and overall inactivity contribute to poorer health. There is no clear picture of the levels of SB among individuals with ID therefore SB levels in this vulnerable population need to be examined. The aim of this systematic review is to investigate the prevalence of sedentary behaviour in adults with an ID. Methods: The PRISMA-P framework was applied to identify high quality articles. An extensive search was carried out in four databases and grey literature sources . In total, 1,972 ...
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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... more
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. Met...
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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... more
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 car...
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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... more
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.
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BACKGROUND There are concerns that antipsychotics may be used inappropriately in adults with intellectual disability for problem behaviours in the absence of a diagnosed mental health condition. The aim was to examine the prevalence and... more
BACKGROUND There are concerns that antipsychotics may be used inappropriately in adults with intellectual disability for problem behaviours in the absence of a diagnosed mental health condition. The aim was to examine the prevalence and patterns of antipsychotic use and their association with problem behaviours and mental health conditions in older adults with intellectual disability. METHODS Cross-sectional data were drawn from Wave 2 (2013/2014) of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA). Medication data were available for 95.6% (n = 677). Those who reported antipsychotic use and reported psychotic or other mental health conditions and those who reported problem behaviours were compared. RESULTS In total, 45.1% (n = 305) had antipsychotics, and of those with antipsychotic use and diagnosis information (n = 282), 25.9% (73) had a psychotic disorder. 58% of those exposed to antipsychotics reported problem behaviours. CONCLUSION Reported use of antipsychotics significantly exceeded reported doctor's diagnosis of psychotic conditions in this study.
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The drug burden index (DBI) is a dose-related measure of anticholinergic and sedative drug exposure. This cross-sectional study described DBI in older adults with intellectual disabilities (ID) and the most frequently reported therapeutic... more
The drug burden index (DBI) is a dose-related measure of anticholinergic and sedative drug exposure. This cross-sectional study described DBI in older adults with intellectual disabilities (ID) and the most frequently reported therapeutic classes contributing to DBI and examined associations between higher DBI scores and potential adverse effects as well as physical function. This study analysed data from Wave 2 (2013/2014) of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA), a representative study on the ageing of people with ID in Ireland. Self- and objectively-reported data were collected on medication use and physical health, including health conditions. The Barthel index was the physical function measure. The study examined 677 individuals with ID, of whom 644 (95.1%) reported taking medication and 78.6% (n = 532) were exposed to medication with anticholinergic and/or sedative activity. 54.2% (n = 367) were exposed to high DBI score (...
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While higher rates and earlier onset of frailty have been reported among adults with intellectual and developmental disabilities (IDD), research on how best to support these individuals is lacking. An international consultation relied on... more
While higher rates and earlier onset of frailty have been reported among adults with intellectual and developmental disabilities (IDD), research on how best to support these individuals is lacking. An international consultation relied on three consensus building methods: the Nominal Group Technique, an NIH consensus conference approach, and a Delphi survey. There is agreement that person-centered planning and aging in place should be guiding principles. Frailty must be considered earlier than in the general population with the recognition that improvement and maintenance are viable goals. Intersectoral collaboration is needed to coordinate assessments and actions. Safety and planning for the future are important planning considerations, as are the needs of caregivers. Ongoing research is needed. The statement offers guidance to respond to frailty among adults with IDD and fosters ongoing exchange internationally on best practice. As new evidence emerges, the statement should be revi...