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.

Connectome-based predictive modelling of cognitive reserve using task-based functional connectivity.

Cognitive reserve supports cognitive function in the presence of pathology or atrophy. Functional neuroimaging may enable direct and accurate measurement of cognitive reserve which could have considerable clinical potential. The present study aimed to develop and validate a measure of cognitive reserve using task-based fMRI data that could then be applied to independent resting-state data. Connectome-based predictive modelling with leave-one-out cross-validation was applied to predict a residual measure of cognitive reserve using task-based functional connectivity from the Cognitive Reserve/Reference Ability Neural Network studies (n = 220, mean age = 51.91 years, SD = 17.04 years). This model generated summary measures of connectivity strength that accurately predicted a residual measure of cognitive reserve in unseen participants. The theoretical validity of these measures was established via a positive correlation with a socio-behavioural proxy of cognitive reserve (verbal intelligence) and a positive correlation with global cognition, independent of brain structure. This fitted model was then applied to external test data: resting-state functional connectivity data from The Irish Longitudinal Study on Ageing (TILDA, n = 294, mean age = 68.3 years, SD = 7.18 years). The network-strength predicted measures were not positively associated with a residual measure of cognitive reserve nor with measures of verbal intelligence and global cognition. The present study demonstrated that task-based functional connectivity data can be used to generate theoretically valid measures of cognitive reserve. Further work is needed to establish if, and how, measures of cognitive reserve derived from task-based functional connectivity can be applied to independent resting-state data.

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.

How best to support individuals with IDD as they become frail: Development of a consensus statement.

BACKGROUND: 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. METHOD: An international consultation relied on three consensus building methods: the Nominal Group Technique, an NIH consensus conference approach, and a Delphi survey. RESULTS: 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. CONCLUSION: 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 revisited and revised.

Embracing authenticity and challenging norms: Including people with an intellectual disability as lecturers in third level intellectual disability nursing programmes.

UNDERREPRESENTATION OF VOICES FROM PEOPLE WITH INTELLECTUAL DISABILITY IN NURSE EDUCATION: In the Republic of Ireland and the United Kingdom, university level programmes for intellectual disability nurses have traditionally incorporated the perspectives of people with intellectual disabilities but have been delivered by non-disabled educators. Perspectives are interpreted through the lens of the non-disabled person, with the voices of people with intellectual disabilities rarely heard. AN ALTERNATIVE APPROACH: INCLUDING PEOPLE WITH INTELLECTUAL DISABILITY AS EDUCATORS: In this article, an alternative approach is proposed that addresses this problem by including individuals with intellectual disabilities as educators within university programmes. Such inclusion will benefit students, academics, and ultimately the individuals who will receive health and social care from these nurses. Many countries have seen legislative and policy changes promoting inclusion for people with an intellectual disability. These are welcomed, but if they are to have a meaningful impact, societal attitudes and perceptions towards people with intellectual disabilities must be challenged. Drawing upon the concepts of social reconstruction and the ideologies of Paulo Freire and John Dewey, we argue that education can catalyze societal transformation. By including individuals with intellectual disabilities as educators in undergraduate programmes, such as nursing, traditional hierarchies of educators can be challenged, and students can learn from experts with lived experiences. This approach fosters critical thinking, reflection, and the development of authentic and informed healthcare professionals. The experiences of a co-author with a lived experience of intellectual disability as an educator, highlights the positive impact of such inclusion on students' perspectives, understanding, and empathy.

Exploring the issue of employment for adults with an intellectual disability in Ireland.

BACKGROUND: 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. MATERIALS AND METHODS: 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's National Intellectual Disability Database (NIDD). RESULTS AND DISCUSSION: 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.

Impact of COVID-19 Pandemic on Caregivers of People with an Intellectual Disability, in Comparison to Carers of Those with Other Disabilities and with Mental Health Issues: A Multicountry Study.

Carers supporting people with an intellectual disability often rely on others to manage the burden of care. This research aims to compare the differences between carer groups and understand the predictors of loneliness changes and burden for carers of people with an intellectual disability. Data from the international CLIC study were analysed. In total, 3930 carers responded from four groups; people who care for those with mental health difficulties (n = 491), dementia (n = 1888), physical disabilities (n = 1147), and Intellectual disabilities (n = 404). Cross tabulation and the chi-squared test were used to compare group compositions and binary logistic regression to model predictors within the intellectual disability group. A total of 65% of those caring for people with an intellectual disability experienced increased burden, and 35% of carers of people with an intellectual disability and another condition experienced more severe loneliness. Becoming severely lonely was predicted by feeling burdened by caring (AOR, 15.89) and worsening mental health (AOR, 2.13) Feeling burden was predicted by being aged between 35 and 44 (AOR, 4.24), poor mental health (AOR, 3.51), and feelings of severe loneliness prior to the pandemic (AOR, 2.45). These findings demonstrate that those who were already struggling with caring experienced the greatest difficulties during the COVID-19 lockdowns.

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

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.

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

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

Down syndrome and dementia: advances in the field.

PURPOSE OF REVIEW: People with Down syndrome represent the world's largest population with a genetic risk for Alzheimer's disease. This review will provide a short summary of what is known and will include recent findings from the field. RECENT FINDINGS: There has been an increasing focus on biomarker research in this population, with a number of studies presenting findings on promising new markers - Neurofilament Light (NfL) appears to be one such promising marker that has emerged. Imaging studies have increased our knowledge on the progression of Alzheimer's disease in this population. SUMMARY: The inclusion of people with Down syndrome in dementia research is vital from a scientific and an equity perspective. Recent advances in the field can have further impact with multisite, cross country collaborative efforts. For this to happen, instruments need to be validated across language and cultures.

To live and age as who we really are: Perspectives from older LGBT+ people in Ireland.

This Open Letter discusses the theme of 'diversity in brain health' in research, practice and policy for older LGBT+ people. It is written by a multidisciplinary group of Atlantic Fellows for Equity in Brain Health at the Global Brain Health Institute in Trinity College Dublin (TCD), from a variety of disciplines (health economics, human geography, anthropology, psychology, gerontology) and professions (researcher, clinicians, writers, practicing artists). The group developed a workshop to explore the theme of 'Diversity and Brain Health' through the lens of lesbian, gay, bisexual, transgender/transsexual plus (LGBT+).  . Guided by two advisors (Prof Agnes Higgins, TCD; Mr Ciaran McKinney, Age and Opportunity), we invited older LGBT+ people and those interested in the topic of LGBT+ and ageing, healthcare providers, policy makers and interested members of the research community. We partnered with colleagues in the School of Law to include socio-legal perspectives. Following the workshop, Roe and Walrath wrote an opinion editorial, published in the Irish Times during the 2019 PRIDE festival, and were subsequently invited by HRB Open Research to provide a more detailed expansion of that work. In this Open Letter we describe the theme of 'diversity and brain health' and some of the lessons we learned from listening to the lived experience of older LGBT+ people in Ireland today. We illustrate why it's important to understand the lived experience of older LGBT+ people and highlight the failure of the State to evaluate the experience of LGBT+ people in policy implementation. We call on researchers, clinicians, service planners and policy makers, to recognize and address diversity as an important way to address health inequities in Ireland.

Imaging biomarkers in neurodegeneration: current and future practices.

There is an increasing role for biological markers (biomarkers) in the understanding and diagnosis of neurodegenerative disorders. The application of imaging biomarkers specifically for the in vivo investigation of neurodegenerative disorders has increased substantially over the past decades and continues to provide further benefits both to the diagnosis and understanding of these diseases. This review forms part of a series of articles which stem from the University College London/University of Gothenburg course "Biomarkers in neurodegenerative diseases". In this review, we focus on neuroimaging, specifically positron emission tomography (PET) and magnetic resonance imaging (MRI), giving an overview of the current established practices clinically and in research as well as new techniques being developed. We will also discuss the use of machine learning (ML) techniques within these fields to provide additional insights to early diagnosis and multimodal analysis.

Total tooth loss and complete denture use in older adults with intellectual disabilities in Ireland.

OBJECTIVES: 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. METHODS: 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. RESULT: 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. CONCLUSION: 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.

Epidemiology of epilepsy in older adults with an intellectual disability in Ireland: associations and service implications.

There are limited studies on the prevalence of epilepsy and co-morbid conditions in older adults with an ID. To begin to address this prevalence of epilepsy was estimated for participants in the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing. Associations with demographic variables and co morbid health conditions were examined. It was found that prevalence was high (30.7%); but declined as people aged. Those with epilepsy were less likely to live with family, independently or in community settings, rates of refractory epilepsy were high and, despite medication over half of those with epilepsy still reported experiencing seizures. Given these findings, people with ID and their careers have considerable needs for information about epilepsy management, and for support from specialist ID and epilepsy services.

What it's like to grow older: the aging perceptions of people with an intellectual disability in Ireland.

The Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing is a national longitudinal study on the aging of people with an intellectual disability (ID) using a randomly selected sample of people with ID over the age of 40. In total, 367 people with an ID completed the aging perception self-report only section. Over 57% of people described their health as very good to excellent with no significant difference in health perceptions found for gender, level of ID, or living circumstance. Exploring people's perceptions utilizing PASW Text Analytics for Surveys 4.1 perceptions often supported negative views of the consequences of aging. These findings suggest challenging negative aging concepts is essential to promote positivity with associated improved health and wellbeing.

Dental attendance among older adults with intellectual disabilities in Ireland.

PURPOSE: To investigate dental attendance patterns and reasons for nonattendance among older adults with intellectual disabilities (ID) in Ireland. METHODS: 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. RESULT: 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. CONCLUSION: 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.

Patterns of multimorbidity in an older population of persons with an intellectual disability: results from the intellectual disability supplement to the Irish longitudinal study on aging (IDS-TILDA).

UNLABELLED: Multimorbidity (2 or more chronic conditions) is being widely studied in older populations and this study explores both the relevance of emerging conceptualizations and the extent to which multimorbidity is a feature of aging in persons with an intellectual disability. METHODS: Data was generated from wave one of the intellectual disability supplement to the Irish longitudinal study on aging (IDS-TILDA) which included 753 persons with an ID aged 40 years and over. Information on the presence of 12 chronic conditions was collected using a standardized protocol administered in face to face interviews with persons with ID and/or their caregivers. Prevalence of multimorbidity was established and patterns were examined using logistic regression models. The patterns of multimorbidity for people with ID that emerged were then compared with those reported for other older adults. RESULTS: Multimorbidity was established for 71% of the IDS-TILDA sample with women at highest risk and rates of multimorbidity was high (63%) even among those aged 40-49 years. Eye disease and mental health problems were most often associated with a second condition and the most prevalent multimorbidity pattern was mental health/neurological disease. DISCUSSION: Further investigation, attention to mental health issues and the development of treatment guidelines that recognize chronic condition disease load are critical to mitigating the negative impact of multiple chronic conditions and preventing additional disability in adults with ID as they age.