A longitudinal exploration of self-reported TV behaviours as a surrogate for sedentary behaviour in older adults with an intellectual disability from the intellectual disability supplement to the Irish longitudinal study on aging (IDS-TILDA) study.

This study presents the findings of an investigation into the self-reported TV habits of adults with an intellectual disability, where time watching TV was used as a proxy for sedentary behaviour (SB). Risk factors identified for the general and intellectual disability populations and standard covariates of age, sex, level of intellectual disability, living circumstances and BMI were explored to determine their viability as contributors to increased TV viewing and SB. Missing data was imputed using Multiple Imputation Chained Equation (MICE). Multinomial logistic regression and Chi-squared Automatic Interaction Detector Analysis (CHAID) analyses of risk factors for increased TV viewing were explored and compared. The Systems of Sedentary Behaviour (SOS) framework was used to structure results. Novel risk factors for increased TV viewing were identified.

A scoping review of post-diagnostic dementia supports for people with intellectual disability.

Objectives: People with intellectual disability, particularly people with Down syndrome, are at an increased risk for early-onset dementia, in comparison to people without an intellectual disability. The aim of this review was to scope the current landscape of post-diagnostic dementia supports for people with intellectual disability.Method: A systematic search of five electronic databases (CINAHL, Medline, PsycArticles, PsycInfo and Web of Science) was conducted for this scoping review. Results were screened independently by two reviewers, with a third reviewer for arbitration where necessary.Results: Forty-two studies met the inclusion criteria, and relevant information was extracted. The articles included focussed on the experiences of people with intellectual disability and dementia, as well as the role of carers, family members and staff. Key themes included ageing in place, environmental supports for people with intellectual disability and dementia, dementia-specific interventions and therapies, as well as the feasibility of these interventions. Besides the studies that focussed on these themes, other studies focussed on staff training and family supports.Conclusion: This review highlights the importance of implementing timely and appropriate post-diagnostic supports for people living with intellectual disability and dementia. More controlled trials are required on post-diagnostic dementia supports for people with intellectual disability.

Does Arterial Stiffness Predict Cardiovascular Disease in Older Adults With an Intellectual Disability?

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 characteristics were mean (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 the Mobil-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 random forest improved model predictions over and above proportional odds logistic regression at 75.85% and 77.7%, respectively. CONCLUSIONS: Arterial stiffness, as measured by the noninvasive Mobil-O-Graph, can be used to predict risk of CVD in individuals with intellectual disabilities.

Moral distress in carers for people with an intellectual disability who died during the COVID-19 pandemic, a template analysis extending the Barlem and Ramos model of moral distress.

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.

Enabling older adults with intellectual disability to become physical activity leaders in their community: Pilot study.

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.

Irish social policy to family carers of adults with an intellectual disability: A critical analysis.

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.

A national cohort study of spiritual and religious practices of older people with intellectual disability.

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.

The potential for person-centred planning to support the community participation of adults with an intellectual disability.

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.

The challenges of mental health of staff working with people with intellectual disabilities during COVID-19--A systematic review.

BACKGROUND: The COVID-19 pandemic has posed a great risk to the mental health of health workers (HWs). There are likely to be particular concerns for staff working with adults with an intellectual disability, where infection control may be more challenging. METHOD: We conducted a systematic review of original research examining the mental health of HWs working with people with intellectual disability, published between March 2020 and July 2021. RESULTS: Five original research studies were included. A high proportion of HWs working with people with intellectual disability reported having had poor mental health including stress, anxiety, and depression. This manifested in similar patterns as for other HWs and also some specific patterns seen as the need to manage increased rates of mental health issues of the people they support. Sources of support and resilience were also identified. CONCLUSION: The support system should target risk factors, answer unmet needs, and build resilience. More research is also required on the ongoing and long-term effects.

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.

The nature and quality of friendship for older adults with an intellectual disability in Ireland.

BACKGROUND: Friendship is important to quality of life, yet people with intellectual disability have more restricted social networks and fewer friends outside family and support staff. METHOD: Data from a nationally representative longitudinal study of older adults with intellectual disability (aged >40) examined rates and types of friends. Factors associated with having a best friend and friendship quality were explored. RESULTS: A large majority (92.4%) had friends but just over half (52%) had a best friend. Co-resident friends (71.8%) were more common than non-resident friends (62%), while staff friendships (62.5%) were important. The majority of best friends were peers with intellectual disability (63.2%), carer/service providers (15.9%) or family (8.4%). Challenging behaviour and communication difficulty were associated with reduced likelihood of having a best friend. A best friend with intellectual disability was associated with lower friendship quality scores. CONCLUSION: Limited choice and social opportunity may result in a precarious form of friendship for older people with intellectual disability that undermines their quality of life.

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.

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: Psychotropic drugs recommended to be avoided or used with caution did not provoke increased seizure frequency in this cohort.

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

PURPOSE: 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. METHODS: 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. RESULTS: 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). CONCLUSIONS: 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.

How dentists learn behaviour support skills for adults with intellectual developmental disorders: A qualitative analysis.

INTRODUCTION: An understanding of how dentists develop patient support techniques for use with adults with intellectual developmental disorders (IDD) may lead to a better understanding of how these techniques can be taught. In this study, we explored how skilled dentists developed non-physical, non-pharmacological patient support techniques (nPSTs) for use with adults with IDD. MATERIALS AND METHODS: Adopting a qualitative descriptive design, a synchronous online group interview was undertaken with six dentists. Informants were subsequently contacted in pairs, or individually, for further interview. All data were analysed using thematic content analysis. Author biases and rigour are considered. RESULTS: Three categories emerged: Motivation to learn; Formal learning; and Informal learning, and the latter had three subcategories: Observation; Trial; and error and Experience. Motivators to learn PST skills included perceived empathy and a sense of responsibility towards patients with IDD. Formal undergraduate learning was lacking leaving dentists to rely on paediatric training "A paediatric model from your training… needs to be restructured and re-emphasised with people with disabilities as they progress through the lifespan.", whereas specialist training was reported to be helpful where available. Over time, practitioners developed an individualised skillset through observation, trial and error and experience. "You learn. Just like any job, you learn on the job. You learn a lot from experience and mistakes." DISCUSSION: Essential patient support skills appear to be acquired in an ad hoc manner. How dentists learn their skills has implications for dental training for future and current dental professionals. CONCLUSIONS: Specific recommendations to improve education are made.

Longitudinal use and factors associated with public transport and other travel options for older people with an intellectual disability in Ireland.

BACKGROUND: Transport is an important basis for social participation. Challenges to accessing and using transport for people with intellectual disabilities increase their risk of exclusion and loneliness. METHOD: Data from a nationally representative study of older people with intellectual disabilities (n = 708) were used to examine longitudinal changes in transport usage and factors associated with using public transport and other travel options. RESULTS: Findings confirmed that this population depends on others for transportation. The most frequently used mode, staff-supported transport, showed no significant longitudinal change. Public transport was secondary, with only moderate continued use between data collection points. Level of intellectual disability most strongly predicted public transport use, while community residence most strongly predicted using public transport to attend work or day programmes. CONCLUSIONS: Transport usage is associated with demand and supply factors linked to the person's environment, including having somewhere to go that requires transport and availability of transport options.

In pursuit of meaningful occupation: Employment and occupational outcomes for older Irish adults with an intellectual disability.

BACKGROUND: Adults with an intellectual disability (ID) have much lower rates of employment than their counterparts without intellectual disability, which increases their risk of poverty and social exclusion. Differential treatment of people with intellectual disability in welfare and training policies suggests an expectation they will be passive welfare recipients rather than productive employees. METHODS: This paper aims to examine occupational activities by older people with intellectual disability in Ireland, exploring factors influencing outcomes using data from the IDS-TILDA study (n = 708). RESULTS: Most people were unemployed but engaged in regular occupational activity. Occupational activity was associated with better emotional/mental health. Activities of Daily Living (ADL) functioning was associated with an active occupational status, while social supports most strongly predicted high occupational engagement across a range of activities. CONCLUSIONS: A focus on the individual meaning derived from a broad range of engagement may better support people with intellectual disabilities to benefit from regular occupational activity.

Approaches to and outcomes of future planning for family carers of adults with an intellectual disability: A systematic review.

BACKGROUND: People with intellectual disabilities are living longer, with family homes and family caregivers increasingly identified as a key support to this ageing population of people with intellectual disabilities. METHOD: This systematic review sets out existing evidence from empirically evaluated intervention studies of future care planning for adults with intellectual disability by family carers. RESULTS: This systematic review identified a scarcity of systematic approaches to future care planning for adults with intellectual disabilities and their family carers. However, evidence from the review suggests positive outcomes for families once they engage in a future planning process. CONCLUSIONS: Contemporary social policy orientation, which emphasizes reliance on families to provide care, along with an ageing population of people with intellectual disabilities, and diminishing caring capacity within family networks, suggests an urgent need for a more expansive research base that evaluates approaches to supporting adults with intellectual disabilities and their family carers to plan for their futures.

Association of Drug Burden Index with grip strength, timed up and go and Barthel index activities of daily living in older adults with intellectual disabilities: an observational cross-sectional study.

BACKGROUND: Drug Burden Index (DBI), a measure of exposure to medications with anticholinergic and sedative activity, has been associated with poorer physical function in older adults in the general population. While extensive study has been conducted on associations between DBI and physical function in older adults in the general population, little is known about associations in older adults with intellectual disabilities (ID). This is the first study which aims to examine the association between DBI score and its two sub-scores, anticholinergic and sedative burden, with two objective measures of physical performance, grip strength and timed up and go, and a measure of dependency, Barthel Index activities of daily living, in older adults with ID. METHODS: Data from Wave 2 (2013/2014) of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) was analysed. Analysis of Covariance (ANCOVA) was used to detect associations and produce adjusted means for the physical function and dependency measures with respect to categorical DBI scores and the anticholinergic and sedative sub-scores (DBA and DBS). RESULTS: After adjusting for confounders (age, level of ID, history of falls, comorbidities and number of non-DBI medications, Down syndrome (grip strength only) and gender (timed up and go and Barthel Index)), neither grip strength nor timed up and go were significantly associated with DBI, DBA or DBS score > 0 (p > 0.05). Higher dependency in Barthel Index was associated with DBS exposure (p < 0.001). CONCLUSIONS: DBI, DBA or DBS scores were not significantly associated with grip strength or timed up and go. This could be as a result of established limitations in physical function in this cohort, long-term exposure to these types of medications or lifelong sedentary lifestyles. Higher dependency in Barthel Index activities of daily living was associated with sedative drug burden, which is an area which can be examined further for review.

Total tooth loss without denture wear is a risk indicator for difficulty eating among older adults with intellectual disabilities.

OBJECTIVES: This study tests whether total tooth loss is a risk indicator for difficulty eating among a population with intellectual disability and whether complete denture wear mediates this risk. METHODS: Dentate status and difficulty eating were reported for a Nationally representative sample of 690 adults over forty with intellectual disabilities as part of The Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA). A logistic regression model tested the relationship between the Difficulty eating and Dentate status, controlling for the effects of other factors. RESULTS: Of the 690 participants, 505 had some teeth (Group 1), 56 had no teeth and reported wearing dentures (Group 2) and 129 had no teeth, not using dentures (Group 3). A parsimonious regression model was developed including all 406 cases with no missing data. Adjusting for the effects of other factors, it was found that, compared to Group 1, the odds of difficulty eating was twice as great (OR = 2.01, 95% CI = 1.02-4.03) among people without teeth, not using dentures (Group 3). Conversely, edentulous participants who had dentures (Group 2) had far lower odds (OR = 0.21, 95% CI = 0.06-0.64) of reporting difficulty eating compared with Group 1. CONCLUSIONS: For adults with ID, total tooth loss was predictive of difficulty eating only when untreated. People with disabilities should be encouraged to maintain a functional dentition through preventive and conservative treatment. When adults with ID become edentulous, oral rehabilitation may reduce the risk of difficulty eating. Dental assessment should be undertaken if people with ID present with difficulty eating.

Prevalence and patterns of antipsychotic use and their associations with mental health and problem behaviours among older adults with intellectual disabilities.

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.