Adapting prescribing criteria for amyloid-targeted antibodies for adults with Down syndrome.

Prior authorization criteria for Federal Drug Administration (FDA) approved immunotherapeutics, among the class of anti-amyloid monoclonal antibodies (mAbs), established by state drug formulary committees, are tailored for adults with late-onset Alzheimer's disease. This overlooks adults with Down syndrome (DS), who often experience dementia at a younger age and with different diagnostic assessment outcomes. This exclusion may deny DS adults access to potential disease-modifying treatments. To address this issue, an international expert panel convened to establish adaptations of prescribing criteria suitable for DS patients and parameters for access to Centers for Medicare & Medicaid Services (CMS) registries. The panel proposed mitigating disparities by modifying CMS and payer criteria to account for younger onset age, using alternative language and assessment instruments validated for cognitive decline in the DS population. The panel also recommended enhancing prescribing clinicians' diagnostic capabilities for DS and initiated awareness-raising activities within healthcare organizations. These efforts facilitated discussions with federal officials, aimed at achieving equity in access to anti-amyloid immunotherapeutics, with implications for national authorities worldwide evaluating these and other new disease-modifying therapeutics for Alzheimer's disease.

Age of Alzheimer's disease diagnosis in people with Down syndrome and associated factors: Results from the Horizon 21 European Down syndrome consortium.

INTRODUCTION: People with Down syndrome (DS) have high risk of developing Alzheimer's disease (AD). This study examined mean ages of AD diagnosis and associations with co-occurring conditions among adults with DS from five European countries. METHODS: Data from 1335 people with DS from the Horizon 21 European DS Consortium were used for the analysis. RESULTS: Mean ages of AD diagnosis ranged between 51.4 (SD 7.0) years (United Kingdom) and 55.6 (SD 6.8) years (France). Sleep-related and mental health problems were associated with earlier age of AD diagnosis. The higher number of co-occurring conditions the more likely the person with DS is diagnosed with AD at an earlier age. DISCUSSION: Mean age of AD diagnosis in DS was relatively consistent across countries. However, co-occurring conditions varied and impacted on age of diagnosis, suggesting that improvements can be made in diagnosing and managing these conditions to delay onset of AD in DS. HIGHLIGHTS: Mean age of AD diagnosis was relatively consistent between countries Sleep problems and mental health problems were associated with earlier age of AD diagnosis APOE ε4 carriers were diagnosed with AD at an earlier age compared to non-carriers Number of co-occurring conditions was associated with earlier age of AD diagnosis No differences between level of intellectual disability and mean age of AD diagnosis.

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.

Developing a health promoting university in Trinity College Dublin-overview and outline process evaluation.

Higher Education Institutions (HEIs) have the potential to impact positively on the health and wellbeing of their staff and students. Using and expanding on the 'health promoting university' (HPU) platform within HEIs, this article provides a description of 'Healthy Trinity', which is an initiative underway in Trinity College Dublin, the University of Dublin. First, Healthy Trinity is contextualized in background literature including international and national policy and practice. Second, an overview of Healthy Trinity is provided including its vision and goals. Third, the article describes the steps taken relating to the identification of stakeholders and use of a network and a co-lead model. Within this approach, the article describes a partnership approach whereby responsibilities regarding health and wellbeing are shared by individuals and the institution. Fourth, the design and implementation of Healthy Trinity is discussed by taking a 'settings approach', in which the emphasis for change is placed on individual behaviours, environment, policy and organizational culture. Consideration is given to the interplay between intervention, implementation strategy and context for successful systemic implementation. The fifth element presented is the early-stage challenges encountered during implementation, such as the need to secure recurrent funding and the importance of having a direct input to the governance of the University to enable systemic change. The sixth and final component of the article is an outline of Healthy Trinity's intention to utilize a process evaluation of the early implementation phases of this complex intervention within a settings approach. Potential deliverables and impacts of this HPU initiative are presented and discussed.

Universities, such as Trinity College Dublin, the University of Dublin, can be looked at as a community of staff and students. The university community has needs in terms of health and wellbeing. 'Healthy Trinity' attempted to build strategies and practices to meet these needs for its community. The approach taken was from multiple angles and involved students and staff, focusing on both individual and organizational responsibility to promote and encourage healthy behaviours. Healthy Trinity achieved some successes as well as encountering some challenges. This article explores how the university might build upon the successes of Healthy Trinity in order to embed a culture which prioritizes health and wellbeing for the entire university community. The article also looks at the broader impact of achieving this goal, namely the University's contribution to a healthier community beyond the university setting.

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.

Physical health effects of sedentary behaviour on adults with an intellectual disability: A scoping review.

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 confirm a cause-and-effect relationship.

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.

Hidden lives and deaths: the last months of life of people with intellectual disabilities living in long-term, generic care settings in the UK.

RATIONALE: This paper concerns mortality and needs for end-of-life care in a population of adults with ID living in generic care homes. METHODS: Various sampling strategies were used to identify a difficult to find a population of people with ID in generic care homes. Demographic and health data were obtained for 132 people with ID. This included the Surprise Question. At T2, 12 months later, data were obtained on the survival of this sample. FINDINGS: The average age was 68.6 years, and the majority were women (55.3%). Their health was typically rated as good or better. Responses to the Surprise Question indicated that 23.3% respondents might need EoLC. At T2, 18.0% of this population had died. The average of death was 72.2 years. The majority died within the care setting (62.9%). IMPLICATIONS: The implications for end-of-life care and mortality research are discussed.

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.

Acute hospital staff's attitudes towards dementia and perceived dementia knowledge: a cross-sectional survey in Ireland.

BACKGROUND: Little is known about staff's attitudes in Irish acute hospital settings towards people living with dementia and their perceived dementia knowledge. The aim of this study was to understand the general level of dementia knowledge and attitudes towards dementia in different types of hospital staff, as well as to explore the potential influence of previous dementia training and experience (having a family member with dementia) and the potential moderating effects of personal characteristics. This data was required to plan and deliver general and targeted educational interventions to raise awareness of dementia throughout the acute services. METHODS: A cross-sectional survey was carried out among a diverse range of hospital staff (n = 1795) in three urban acute general hospitals in Ireland, including doctors, nurses, healthcare attendants, allied professionals, and general support staff. Participants' perceived dementia knowledge and attitudes were assessed as well as their previous dementia training and experience. To measure participant's attitude towards dementia, the validated Approaches to Dementia Questionnaire (ADQ) was used. RESULTS: Hospital staff demonstrated positive attitudes towards people living with dementia, and believed they had a fair to moderate understanding of dementia. Both 'having previous dementia training' and 'having a relative living with dementia' predicted attitude towards dementia and perceived dementia knowledge. Interestingly, certain personal staff characteristics did impact dementia training in predicting attitude towards dementia and perceived dementia knowledge. CONCLUSION: This study provides a baseline of data regarding the attitudes towards dementia and perceived dementia knowledge for hospital staff in Irish acute hospitals. The results can inform educational initiatives that target different hospital staff, in order to increase awareness and knowledge to improve quality of dementia care in Irish hospitals.

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.