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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 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.

Background: People 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. Methods: The 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. Results: Out 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. Conclusion: The 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.

Background: People with intellectual disabilities are living longer and are increasingly diverse, with health and care needs that are varied and complex. Without changes to funding, services have found it difficult to respond to needs and wishes. Method: A descriptive mixed methods design study, data were collected through questionnaire, focus groups and individual interviews from intellectual disability service managers, direct care staff and older people with intellectual disabilities and family members. Results: Continued reticence on the part of some community healthcare providers to treat people with intellectual disability was noted. Although some service innovations were noted, housing, staffing levels, staff mix and the timely provision of equipment were all reported to impact the ability of services to respond to changing needs. Current per-capita funding practices were reported as unresponsive to growing age-related complexity and fundamentally unsustainable. Conclusions: The health inequalities experienced by people with intellectual disabilities are compounded as they age with complex age-related health needs. There is an urgent need for revision of the service model in Ireland and instigation of flexible and responsive approaches to funding.

Background: Spirituality and spiritual support for older people with intellectual disability are deemed important, however little is known about their specific needs. This paper reports for the first time on the religious and spiritual practices of older adults with intellectual disability. Methods: A national longitudinal study examined the prevalence of spiritual practices among older people with intellectual disability in the Republic of Ireland. Results: Older people with intellectual disability seek and receive solace from religious and spiritual practices, especially if they are lonely, in poor health, distressed or bereaved. There is likely a social benefit to spiritual and religious aspects of life that would be beneficial to explore further. Conclusions: Globally more research is required and efforts should be made to ensure greater opportunities for inclusion in societal spiritual and religious activities and to more clearly determine the spiritual needs of this population.

Background: Constipation impacts health-related quality of life with a burden similar to other chronic conditions. This study characterises the prevalence of constipation and its associated factors in older adults with intellectual disability. Methods: Data from the Intellectual Disability Supplement of The Irish Longitudinal Study on Ageing was analysed using bivariate and multivariate approaches. Results: Constipation affected 43.5% of this cohort and was more common in females, those in residential settings, and those with a severe/profound level of intellectual disability. The type of residence, level of intellectual disability, a low fat diet, high cholesterol, multimorbidity and, physical activity predicted constipation status with 67.7% accuracy. Physical activity was associated with lower constipation prevalence, where minimal activity was sufficient to observe this effect. Conclusions: Constipation is a common health concern in older people with intellectual disability. This analysis reveals characteristics that should inform the careful monitoring of bowel health in this population.

Background: Before COVID-19, people with intellectual disabilities were digitally excluded, facing difficulties accessing and using technology. The pandemic outbreak closed down many in-person services and supports for this population. Methods: This study examined changes in technology use to support the healthcare and social connections of older adults with intellectual disability in Ireland (n = 682) during COVID-19. Decision tree analyses explored factors associated with using technology for health and social connection; and to explore relationships between technology use and subjective outcomes of stress/anxiety and of positives during this period. Findings: Technology use for healthcare and social connection increased during COVID-19, but not enough to make up for the loss of in-person care/connection. Residence type was associated with increased use of technology for healthcare utilisation, with the highest rates among community group home residents and the lowest among those in independent/family settings. Increased technology use to speak with both family and friends was associated with prior digital skills and digital access. Increased technology use was significantly associated with both positive and negative experiences during the pandemic. Conclusions: The COVID-19 pandemic offered an opportunity for increased digital connection for older adults with intellectual disabilities, but not all benefitted. Those with prior skills, available supports, and the greatest need to connect were more likely to enhance their use of technology. The complexity of the COVID-19 period, including the general impact on mental health and well-being, means that the role technology played in supporting quality of life and mitigating stress/anxiety needs further and longer-term investigation.

Background: This article aims to understand moral distress in carers of people with an intellectual disability during the COVID-19 pandemic. Method: Nine staff carers of seven people with an intellectual disability, who had been participants of the IDS-TILDA study in Ireland, who died during the COVID-19 pandemic participated in in-depth, semi-structured telephone interviews. Template analysis was used to analyze the interviews. Results: Obstructions in performing their duties left carers feeling powerless and experiencing moral conflict distress, moral constraint distress and moral uncertainty distress. Most managed to connect to the moral dimension in their work through peer support, understanding they fulfilled the wishes of the deceased, and/or thinking about how they or others did the best they could for the person they were caring for. Conclusions: This research demonstrates that while restrictions may have been effective in reducing the spread of COVID-19, they were potentially damaging to carer wellbeing.

Background: The COVID-19 pandemic has placed enormous strain on health systems around the world, undermining the mental health and wellbeing of healthcare workers. Supporting people with intellectual disabilities may be particularly challenging for workers, as some people with intellectual disabilities may have a limited understanding of the pandemic, and find it challenging to adhere to the restrictions imposed by public health guidelines such as social distancing, lockdowns and change in usual routine and activities. In addition, many people with intellectual disabilities have increased vulnerability to more negative effects of COVID-19, with significantly higher mortality rates. Although there is emerging research on the mental health of healthcare staff during this time, there has been little specific work on the mental health of staff working with people with intellectual disability, particularly a lack of qualitative research. Methods: The current study employed semi-structured interviews with 13 healthcare workers (12 women and 1 man) who were working with people with intellectual disability during the COVID-19 pandemic. The interview data were analysed using thematic content analysis. Findings: The participants spoke in depth about the challenges of the working environment, the impact of providing care during the pandemic on staff mental health, supporting staff mental health and wellbeing and learning for the future. Conclusions: Systematic efforts are required to protect the mental health of this staff cohort, as well as encouraging resilience and successful coping among staff themselves.

Background: As 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. Methods: The 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. Findings: In 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. Conclusions: There 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.

This paper explores contemporary Irish social policy for family caregivers with specific focus on the dynamic between the individual, the family and the state in terms of the social contract for care provision for people with intellectual disability. Drawing from Bacchi's analytical framework (Bacchi, 2009), the Irish National Carers' Strategy is interrogated specifically with regards to how it frames and assumes the social contract for family care provision for adults with an intellectual disability. We suggest that Irish social policy constructs family caregiving as the assumed natural and neutral point of departure for providing care within society, and this constructed identify is subsequently reinforced through the provisions contained with the policies themselves that seek to support such caregivers. A fundamental reconsideration of the social contract for such care provision and support with society would appear warranted.

This paper describes and analyses the experience of the participants of an undergraduate reading group on 'The Wartime Quartet'. In the first section, I explain the set-up of the reading group. In the second section, I discuss what the participants shared and the trends we noticed in our experiences as women and marginalised genders studying undergraduate philosophy In the third section, I explain why the philosophy of the Quartet was itself vital to our development and how it enabled us to begin critically engaging with the material presented in our courses. My fourth section introduces a phenomenon I call "disassociated disagreement" (DD) and uses testimonies from former members of the reading group to illustrate why this phenomenon is central to understanding the confusion that sometimes presents in students of philosophy. I then discuss a strategy for combating DD and illustrate how students' seeming confusion can provide a pathway to unique and insightful philosophical perspectives. I conclude by situating my discussion within the broader framework of research into women's representation in philosophy and close by arguing that the concept of DD can be a potent tool for encouraging more philosophy undergraduates who belong to marginalised groups to pursue further study.

Person-centred planning (PCP) puts individuals with an intellectual disability at the centre of service and support planning, identifying how individuals wish to live their lives and what is needed to make that possible. PCP has been identified as having the potential to facilitate improved social inclusion and community participation. A mixed-methods approach combined quantitative analyses with qualitative case studies of individuals with severe-profound intellectual disability to assess the impact of PCP on community participation for adults with an intellectual disability at a disability service in Dublin. We conclude that PCP may provide a good basis to plan community participation and, with the right supports in place, may provide opportunities for people with complex needs to improve their community participation. Supports including familiar staff and family are critical to the success of PCP for people with complex needs, and their absence may undermine the best intentions of PCP for this population.

Background: Medication data are a valuable resource in epidemiological studies. As the most common data collection method of medication data is self‐report, it is important to understand the accuracy of this in comparison with other methods such as dispensing records. The aim of this study was to compare the agreement between two different sources of medication data of older adults with intellectual disability (ID). Methods: Self‐report medication data were gathered from the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing and linked to national pharmacy dispensing records. The kappa statistic was used to measure agreement between the two data sources for psychotropic medication. Results: The lowest agreement level was 'moderate' for the number of anxiolytics reported (kappa 0.56). The highest level of agreement was 'almost perfect' for the binary variable of antipsychotics (kappa 0.91). Other agreement results were 'substantial' or 'almost perfect'. Conclusions: Good agreement was found between the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing medication dataset and national dispensing records. Self‐report medication data appear to be a valid method of data collection in psychotropic medication use in adults with ID. [ABSTRACT FROM AUTHOR]

Background: Inactivity is a correlate of adverse health. Adults with an intellectual disability (ID) are more inactive than the general population and often present with more complex health issues. Self‐reported activity questionnaires such as the International Physical Activity Questionnaire – Short Form (IPAQ‐SF) and Rapid Assessment of Physical Activity (RAPA) questionnaire are the predominant source of activity information because of their low cost, non‐invasive nature, ease of administration and interpretation of results. Methods: Correlates of inactivity among the general and ID populations were identified through a literature scoping review. Inactivity was measured using the RAPA and the IPAQ‐SF. A multiple‐imputation chained equation was used to impute missing data. Using Pearson chi‐squared analyses, relationships between these correlates as well as covariates of age, sex, level of ID, body mass index (BMI) and aetiology, and RAPA and IPAQ‐SF categories were explored. Logistic regression provided more detailed analyses. Results were summarised using the Systems of Sedentary Behaviour framework. Spearman correlations examined the IPAQ‐SF and RAPA relationships. Results: Three correlates for inactivity emerged from the IPAQ‐SF and RAPA questionnaire. Up after 07:00 h was a correlate for both. Difficulty walking 100 yards and epilepsy were additional correlates of inactivity. Weak but significant correlations were seen between IPAQ‐SF and RAPA scores. Conclusions: High inactivity levels are present in adults with an ID. The IPAQ‐SF and RAPA questionnaires are weakly correlated. [ABSTRACT FROM AUTHOR]

Background: Arterial stiffness has been associated with an increased risk of cardiovascular disease (CVD) in some patient populations. Objectives: The aims of this study were to investigate (1) whether there is an association between arterial stiffness, as measured by the Mobil-O-Graph, and risk for CVD in a population of individuals with intellectual disability and (2) whether arterial stiffness can predict the risk for CVD. Methods: This cross-sectional study included 58 individuals who participated in wave 4 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Aging (2019-2020). Statistical models were used to address the first aim, whereas machine learning models were used to improve the accuracy of risk predictions in the second aim. Results: Sample characteristicsweremean (SD) age of 60.69 (10.48) years, women (62.1%), mild/moderate level of intellectual disability (91.4%), living in community group homes (53.4%), overweight/obese (84.5%), high cholesterol (46.6%), alcohol consumption (48.3%), hypertension (25.9%), diabetes (17.24%), and smokers (3.4%). Mean (SD) pulse wave velocity (arterial stiffness measured by Mobil-O-Graph) was 8.776 (1.6) m/s. Cardiovascular disease risk categories, calculated using SCORE2, were low-to-moderate risk (44.8%), high risk (46.6%), and very high risk (8.6%). Using proportional odds logistic regression, significant associations were found between arterial stiffness, diabetes diagnosis, and CVD risk SCORE2 (P < .001). We also found theMobil-O-Graph can predict risk of CVD, with prediction accuracy of the proportional odds logistic regression model approximately 60.12% (SE, 3.2%). Machine learning models, k-nearest neighbor, and randomforest improvedmodel predictions over and above proportional odds logistic regression at 75.85%and 77.7%, respectively. Conclusions: Arterial stiffness, as measured by the noninvasiveMobil-O-Graph, can be used to predict risk of CVD in individuals with intellectual disabilities. [ABSTRACT FROM AUTHOR]

Background: Constipation impacts health-related quality of life with a burden similar to other chronic conditions. This study characterises the prevalence of constipation and its associated factors in older adults with intellectual disability. Methods: Data from the Intellectual Disability Supplement of The Irish Longitudinal Study on Ageing was analysed using bivariate and multivariate approaches. Results: Constipation affected 43.5% of this cohort and was more common in females, those in residential settings, and those with a severe/profound level of intellectual disability. The type of residence, level of intellectual disability, a low fat diet, high cholesterol, multimorbidity and, physical activity predicted constipation status with 67.7% accuracy. Physical activity was associated with lower constipation prevalence, where minimal activity was sufficient to observe this effect. Conclusions: Constipation is a common health concern in older people with intellectual disability. This analysis reveals characteristics that should inform the careful monitoring of bowel health in this population. [ABSTRACT FROM AUTHOR]

Background: Neoadjuvant long course chemoradiotherapy has become the standard treatment for locally advanced rectal cancer. It can reduce tumour bulk, downstage, reduce the risk of local recurrence, and increase the possibility of clear resection margins. The aim of our study is to evaluate all patients over a 9 year period who underwent neoadjuvant chemoradiotherapy for rectal cancer and entered our watch and wait programme. Methods: Data were analysed from a prospective database for all patients diagnosed with rectal cancer over a 9 year period (2011-2019 inclusive). Findings: Over a 9 year period, 532 patients were treated for rectal cancer, with 180 patients receiving long course chemoradiotherapy. 61 (11%) patients entered a watch and programme as they had a complete clinical and radiological response following chemoradiotherapy. Within this programme, 40 patients (65%) remain disease free over the follow-up period (mean 38 months); 12 (20%) patients had regrowth and proceeded to surgery; and 9 (15%) proceeded to palliation due to being unfit for surgery or had distant metastatic disease. Overall (all cause) mortality was 18% during follow-up period in the watch and wait group. Conclusions: Neoadjuvant long course chemoradiotherapy is the standard treatment for locally advanced rectal cancer. 34% of our patient group who received long course chemoradiotherapy entered a watch and wait programme with the majority avoiding major rectal surgery. [ABSTRACT FROM AUTHOR]

Objective: To assess the influence of diastolic dysfunction on the evolution of pulmonary hypertension in neonates with Down Syndrome over the early newborn period.Study Design: This was a prospective observational cohort study. Echocardiography was performed three times over the first week of life in both Down syndrome and control cohorts. Measurements of pulmonary arterial pressure in addition to left ventricular (LV) and right ventricular systolic and diastolic function were collected.Results: Seventy babies with Down syndrome and 60 control infants were enrolled. Forty-eight of the infants with Down syndrome (69%) were born with congenital heart disease (CHD). Echocardiography surrogates of pulmonary hypertension and myocardial function remained significantly impaired in the Down syndrome group in comparison with control infants (all P < .01). In the Down syndrome group, LV early diastolic strain rate was independently associated with measures of pulmonary hypertension while controlling for gestational age, cesarean delivery, and the presence of CHD (P < .01).Conclusions: Intrinsic LV diastolic impairment is directly associated with higher indices of pulmonary hypertension in infants with Down syndrome and may be a contributing factor to its evolution. [ABSTRACT FROM AUTHOR]

Background: Negative mental health implications of menopause found in the general population, combined with high rates of mental health conditions found in women with intellectual disabilities, provide rationale to examine the existing literature to determine the impact of menopause on women with intellectual disabilities., Methods: The review was conducted using scoping review methodology by Arksey and O'Malley. A systematic search was conducted across multiple databases. Relevant articles were screened according to inclusion/exclusion criteria. Braun and Clarke's thematic analysis was utilised to identify themes., Results: After screening, eight articles satisfied the inclusion/exclusion criteria, and after thematic analysis, themes found were: changes in mood, lack of reporting of psychological symptoms and difficulty attributing psychological symptoms to menopause., Conclusions: Findings indicate the paucity of literature and the lack of attention paid to examining the impact of menopause on the experiences and mental health of women with intellectual disabilities., (© 2025 The Author(s). Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Background: The positive impact of physical activity on health is widely known. A comparison between activPAL objective measures and International Physical Activity Questionnaire short form (IPAQ-SF) self-reported activity levels was completed with older adults with intellectual disability. Understanding differences between the two methodologies will better support the interpretations of findings and recommendations., Methods: ActivPAL measures including intensity, time and type were considered for 72 participants. Similarly, the IPAQ-determined measures were investigated. Implications of different numbers of activPAL valid days were considered. Comparisons between the activPAL and IPAQ-SF scores were examined using multiple correlation coefficients., Results: Low to moderate agreement was found between the activPAL and IPAQ-SF using Spearman's Rho and Pearson's correlation coefficients., Conclusions: The IPAQ-SF may not be the optimal tool for the accurate determination of activity levels in this population., (© 2024 The Author(s). Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Background/objectives: Pediatric patients with autism spectrum disorder (ASD) face unique challenges, especially amongst individuals from historically minoritized racial groups. ASD has also been associated with an increased mortality from COVID-19. This study aims to explore the differences in sociodemographic factors and health outcomes (as measured by length of stay) amongst hospitalized pediatric patients with COVID-19 infections and a diagnosis of ASD compared to individuals with a COVID-19 infection alone; Methods: We performed a retrospective cohort study examining pediatric patients (ages birth to 21) who were hospitalized with a diagnosis of ASD and COVID-19 compared to patients with a diagnosis of COVID-19 alone between January 2019 and June 2023 using Epic Systems Corporation's Cosmos, a de-identified dataset aggregated from electronic health record data. We examined differences in demographic factors and length of stay (LOS) between groups by utilizing chi-square and Wilcoxon rank sum tests. Multiple logistic regression models were utilized to assess the association between length of stay and diagnosis; Results: A total of 21,708 distinct pediatric patients with a diagnosis of ASD and COVID-19 or COVID-19 alone were included in the analytical dataset. Patients with ASD and COVID-19, compared to patients with COVID-19 alone, had a higher proportion of individuals identifying as male and White. Patients with COVID-19 alone, compared to individuals with ASD and COVID-19, had higher proportions of individuals identifying as Black or African American. Higher proportions of individuals with ASD and COVID-19 had public insurance, compared to individuals with COVID-19 alone. Having a diagnosis of ASD and COVID, after controlling for covariates, was associated with higher odds of having a length of stay greater than the three days (cutoff value determined by the median LOS of three days) compared to having a diagnosis of COVID alone (aOR 1.19, 95% CI 1.04-1.35); Conclusions: Our study highlights the health disparities experienced during hospitalizations by pediatric patients with ASD and COVID-19. Further studies should address barriers and support health outcomes for pediatric patients with ASD.

People with an intellectual disability face inequality accessing healthcare that extends to end-of-life care. Furthermore, end-of-life care for people with an intellectual disability is more complex than that for the general population. This protocol sets out how our review will explore the available evidence and identify the key characteristics of care that are required for people with an intellectual disability to have a good end-of-life experience. A critical interpretive synthesis approach will be adopted, combining some elements of a systematic review with interpretive synthesis. This approach has been selected as it allows a diverse body of literature to be considered. Furthermore, it is compatible with theory generation allowing new insights to emerge in an iterative process. Electronic databases and grey literature sources will be searched using pre-defined search terms. Following initial title and abstract screening, eligible papers will undergo full text screening. Papers that are deemed to be 'fatally flawed' will be excluded and remaining papers appraised for relevance. Resultant papers will be included in the sampling frame from which data extraction will occur. An existing framework outlining key factors in the provision of excellent end-of-life care to people with an intellectual disability will be used to support data extraction and synthesis. Data extracted will be integrated into a synthesising argument in the form of a theoretical framework. This will identify the key characteristics in the provision of care that are required for people with an intellectual disability to have a good end-of-life experience. The developing theoretical framework will guide further selection of relevant literature to fill any conceptual gaps until saturation is reached. Our review will add to the existing body of evidence, shedding light on the key factors necessary in the provision of care to ensure that people with an intellectual disability have a good end-of-life experience., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2024 Haigh et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)