Mary Mccarron

Trinity College Dublin | TCD · Faculty of Health Sciences

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 wil...

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...

Aim To explore healthcare workers' experiences of end of life care for people with an intellectual disability. Design A descriptive qualitative study. Method Semi‐structured interviews were conducted with 28 healthcare workers who cared for older people with an intellectual disability at their end of life. Data were analysed using thematic analys...

Purpose People with intellectual disabilities are high users of acute hospital care. Given their varied and often complex health-care needs, they often experience health inequalities and inequities, contributing to poorer health outcomes. As nurses are the largest health-care workforce with a patient-facing role, they have an important responsibili...

Background Adults with Intellectual Disabilities (ID) are a vulnerable population, experiencing higher rates of multimorbidity, polypharmacy and healthcare inequities. Pre-existing functional disability and dependency complicates frailty measurement in ID. This study aimed to develop an ID-specific Frailty Index (FI), and compare frailty measuremen...

Background Adults with Intellectual Disability (ID) are a vulnerable population, experiencing high rates of polypharmacy and multimorbidity, and experiencing early mortality. Lifelong functional and intellectual disability can complicate frailty measurement. To date, no studies have examined long term frailty transitions in this complex group. The...

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 A...

Background Medications with sedative or anticholinergic properties should be prescribed with caution in those with cognitive complaints. This is particularly relevant in people ageing with an intellectual disability (ID). Higher drug burden index (DBI) scores are associated with increased frailty and falls and reduced quality of life in older peopl...

Development of a new guideline for medication use in elderly people with intellectual disabilities.

Background: Older people (i.e. ≥40 years) with intellectual disability have unique medication needs and may experience high levels of potentially inappropriate prescribing. Despite the availability of tools to optimize older adults' prescriptions, there is no comprehensive tool specifically for use in older adults with intellectual disability. We...

Introduction Intellectual disability defined as “a condition characterized by significant limitation in both intellectual functioning and adaptive behaviour that originates before the age of 22”.[1] Older adults with intellectual disability are exposed to high anticholinergic burden, due to the high prevalence of neurological and mental health dise...

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 al...

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...

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 y...

A shift from single to multi-site health studies enabled a range of research benefits including faster recruitment of larger and more diverse samples; increased statistical power, greater rigour, generalisability, and external reliability; and increased likelihood of impacting policy and clinical practice. However, ethical review of multi-site stud...

Background People with intellectual disabilities have poorer health and die earlier than their peers without identified disabilities. This difference represents a significant inequality. Until recently, it was considered that cancer was less common in this population, mainly because they did not live long enough to develop age-related cancers. Howe...

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 disabilit...

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 group...

Background Down syndrome (DS) is an important population to include in clinical trials aiming to prevent or delay Alzheimer’s disease (AD). This talk will summarise previous work in trajectory modelling to identify the earliest ages of change in cognition and the optimal sample sizes needed for clinical trials in DS. It will present validate data o...

Mahar et al. found that people with intellectual or developmental disabilities are more likely to be diagnosed with metastatic breast (female) and colorectal cancer in comparison to the general population. This editorial discusses the urgent need to develop effective strategies aimed at reducing this inequity for people with intellectual or develop...

Widespread, and sometimes inappropriate use of psychotropics in adults with intellectual disability has been an international concern. These medicines have been used to treat mental health conditions, but also, controversially, some types of behaviours not necessarily associated with the diagnosis or in the absence of a relevant diagnosis. Results...

IDS-TILDA Wave 5 Report. Chapter 2: Social Determinants of Health: Choice, Interpersonal Relationships and Community Participation.

Social inclusion is associated with better health and quality of life. Community participation is essential to inclusion and is an established human right. However, people with intellectual disability experience limitations and challenges to their participation. This study examined difficulties older Irish adults had participating in community. A s...

Background: High anticholinergic burden is associated with physical and cognitive functional decline however, these medications are still being prescribed for older adults with intellectual disability. People with intellectual disability exposed to higher anticholinergic burden compared to general population. Additionally, anticholinergic exposure...

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...

Growth in the ageing population of people with intellectual disability is well established as are increasing concerns about health, changes in function and the potential for loneliness and isolation and often unwanted transitions to other settings, justified as being able to address increasing needs.

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 intell...

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 wi...

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 preval...

Key Points Dementia risk is elevated in people with intellectual disability, particularly for those with Down syndrome Differences in lifestyle factors have been cited as factors that exacerbate dementia risk in people with intellectual disability Lifestyle factors can be targeted to enhance cognitive reserve and reduce dementia risk for people wit...

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 t...

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-s...

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 ad...

Widespread, and sometimes inappropriate use of psychotropics in adults with intellectual disability has been an international concern. These medicines have been used to treat mental health conditions, but also, controversially, some types of behaviours not necessarily associated with the diagnosis or in the absence of a relevant diagnosis. Results...

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...

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 syst...

Background: Older adults with intellectual disability are exposed to a higher anticholinergic burden compared to general older adults. This is due to a higher rate of both mental and neurological disorders among people with intellectual disability. The use of medications with a high anticholinergic burden is associated with adverse effects includin...

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 i...

Background: Loneliness has been associated with increased hypervigilance and sad passivity. The physiological and psychological reactions of people with an intellectual disability to loneliness have never been investigated. Therefore, this research aims to explore the outcomes of loneliness for an ageing intellectual disability population. Methods:...

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 datab...

This concluding chapter brings together the key points offered by the book’s contributors and aims to rally collective thinking and action towards the future. Ensuring that people with intellectual and developmental disability have real opportunities for active participation, social inclusion and self-determination across all dimensions of dying an...

COVID-19 is likely to have compromised the management of end-of-life care. Disruptions include the inability to respect advanced care planning, offer support to the person dying, and the failure to celebrate the person's life within local customs. Where people work to deliver high-quality care, such disruption can lead to carers experiencing moral...

This chapter briefly outlines Western funeral practices and then describes how funeral participation is important to successful grieving and meaning making of others’ death. It examines research on funeral attendance and barriers, involving adults with intellectual disability. COVID-19 has restricted funeral participation for all, highlighting how...

Hospice and palliative care providers will benefit from cross-training in intellectual disability from intellectual disability service providers. Similarly, intellectual disability provider staff will benefit from insights, training, and supports from hospice and palliative care providers. Largely unaddressed is training needed to better support pe...

Many people with intellectual disability, particularly those with Down syndrome, are at increased risk for Alzheimer’s disease. Recent findings suggest that while onset may be at an earlier age and more rapid in early dementia stages, there is often a long late stage where decisions about end-of-life care and dying well must be supported. For the i...

Use of patient/health proxy authorised do-not-resuscitate (DNR) or do-not-attempt-resuscitation (DNAR) orders is widespread in palliative, hospice and hospital-based chronic illness care. Such orders often reflect self-determination, avoidance of futile care and quality of dying principles. Reports during COVID-19 of physicians writing DNR/DNAR ord...

This chapter examines contemporary research about end of life with a particular emphasis on people with intellectual disabilities and their experiences, rather than the views of others such as caregivers and clinicians. Topics include their experiences when family or friends die, and engagement with their own dying and death. The extent to which pe...

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 I...

Background : Sedentary behaviour (SB), which is characterised by low levels of energy expenditure, has been linked to increased cardio-metabolic risks, obesity and mortality, as well as cancer risk. No firm guidelines are established on safe levels of SB. Adults with an intellectual disability (ID) have poorer health than their counterparts in the...

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 pande...

Background Adults aging with intellectual disability (ID) face barriers to engagement in occupation. Greater understanding of factors that affect engagement in work and leisure occupations is required to support occupational engagement in this population. Purpose. Identify predictors of engagement in work and leisure occupations for adults aging wi...

Background : Loneliness has been associated with hypervigilance and sad passivity. The physiological and psychological reactions of people with an intellectual disability to loneliness have never been investigated. This research aims to explore the outcomes of loneliness for an ageing intellectual disability population. Methods : In Ireland, data f...

https://idstilda.tcd.ie/assets/docs/covid19report2.pdf

Background: People with intellectual disability have increased risk of exposure to and adverse outcomes from coronavirus disease 2019 (COVID-19).They also face challenges to mental health and well-being from COVID-19-related social restrictions and service closures. Methods: Data from a supplemental COVID-19 survey from the Intellectual Disability...

Background This study examines overweight/obesity and chronic health conditions (CHCs) in older people with intellectual disability (ID). Methods Data for this cross-sectional observational study emanated from Wave 2 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing, a longitudinal study assessing the health and w...

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...

Introduction Ireland has an ageing population of persons with intellectual disability (ID), autism spectrum disorder (ASD) and both (ID/ASD). Despite this, little is known about the prevalence of ASD and its effect on functional outcomes, psychiatric comorbidity or diagnostic issues in an older population with ID. This article reviews the literatur...

Background : Sedentary behaviour (SB), which is characterised by low levels of energy expenditure, has been linked to increased cardio-metabolic risks, obesity and mortality, as well as cancer risk. No firm guidelines are established on safe levels of SB. Adults with an intellectual disability (ID) have poorer health than their counterparts in the...

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 Stud...

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 S...

Background: People with intellectual disability have increased risk of exposure to and adverse outcomes from coronavirus disease 2019 (COVID-19).They also face challenges to mental health and well-being from COVID-19-related social restrictions and service closures. Methods: Data from a supplemental COVID-19 survey from the Intellectual Disability...

Background: Recently, efforts have been made to quantify frailty among older adults with intellectual disability. Little research has been performed on the association between medication exposure and frailty among older adults with intellectual disability, despite a known association among older adults without intellectual disability. The aim of th...

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-meth...

Background : Sedentary behaviour (SB), which is characterised by low levels of energy expenditure, has been linked to increased cardio-metabolic risks, obesity and mortality, as well as cancer risk. No firm guidelines are established on safe levels of SB. Adults with an intellectual disability (ID) have poorer health than their counterparts in the...

This chapter discusses the health and well-being of people ageing with an intellectual disability using a social determinants of health lens, taking into account various personal and environmental factors that influence health. Use of this approach may help to stimulate debate both of the social determinants framework itself, and of ways to context...

Globally between 30-40% of all osteoporotic fractures occur among men, with a quarter of all hip fractures, the most serious complication of osteoporosis, occurring in men. Among men of 50 years of age or older, osteoporotic fracture risk reaches an alarming 20%. What is of great concern is that associated mortality is greater among men when compar...

Background: Older adults with intellectual disability often take multiple medicines with anticholinergic activity and sedative properties to manage multi-morbidity; the use of medication with anticholinergic activity has been found to be associated with various cognitive and physical impairments. However, there are limited studies that have examine...

Background Social restrictions and service closures from COVID-19 have negatively impacted social inclusion and well-being for some people with intellectual disabilities (IDs). Methods The fourth wave of a national longitudinal study on ageing in people with ID in Ireland was interrupted during the COVID-19 outbreak. Social inclusion data for pre-...

Background: People with an intellectual disability are more likely to experience frailty earlier in life and with greater severity compared to the general population. There is growing consideration of determinants of frailty and identifying factors which may influence the change in frailty status over time. The objective of this review was to inves...

Background: Sedentary behaviour contributes to non-communicable diseases, which account for almost 71% of world deaths. Of these, cardiovascular disease is one of the largest causes of preventable death. It is not yet fully understood what level of sedentary behaviour is safe. People with an intellectual disability have poorer health than the gener...

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 Longitudin...

Aims Hypertension is a leading risk factor for cardiovascular disease, accounting for almost 50% of ischaemic heart disease mortality. This study aims to identify the prevalence, awareness, treatment, and control of hypertension and their predictors in older adults with an intellectual disability (ID). Methods and results This cross-sectional stud...