TCAID: In Focus

As 2024 comes to a close, the Trinity Centre for Ageing and Intellectual Disability (TCAID) celebrates a year of meaningful progress. Through impactful research, strategic collaborations, and evidence-based initiatives, we have advanced understanding and improved care for adults with intellectual disabilities. This year’s achievements strengthen our resolve to drive change, and we look forward to building on this momentum in 2025 to further enhance health, support, and outcomes in the field.

On November 6, Professor Mary McCarron, Professor Eilish Burke, Dr Martin McMahon and Dr Eimear McGlinchey, presented to the Joint Oireachtas Committee on Disability Matters about improving life quality and longevity for people with disabilities, discussing findings from IDS-TILDA. Key points included progress in community inclusion, the vital role of Registered Intellectual Disability Nurses, and challenges like limited resources, healthcare inequities, and gaps in research on specific health issues affecting this population.

IDEAS 2024, held on 17-18 October 2024, marked a gathering of experts, researchers, service providers, and advocates committed to translating leading-edge research into impactful practices. Organised by the Trinity Centre for Ageing and Intellectual Disability (TCAID) in collaboration with the National Federation of Voluntary Service Providers and the HSE’s National Clinical Programme for People with Disability, the event demonstrated the critical role of evidence in shaping policy, the conference aimed to bridge research and practice. The conference empowered those who work with ageing individuals with intellectual disabilities to drive meaningful improvements in their care and quality of life.

On September 6th, an exciting event, led by Stephanie Corrigan and Prof Éilish Burke, on Sexual and Reproductive Health for women with intellectual disabilities took place. Gathering women with intellectual disabilities, thier carers, and healthcare professionals, the event addressed key health topics like contraception and menopause, sharing important research, and encouraging open discussion on historically neglected issues like consent and reproductive rights. The event aimed to end the taboo and ensure women with intellectual disabilities are included in these vital conversations. Aligning with ongoing efforts to improve healthcare access for women with intellectual disabilities.

Last week, TCAID collegues attended the IASSIDD world congress in Chicago. The team connected with fellow researchers, delivered 34 impactful presentations and engaged in collaborative symposiums and round-table discussions on cutting-edge research and best practice. In exciting news, Professor Mary McCarron took to the stage at the conference to officially announce that the next IASSIDD World Congress will be hosted in Dublin in 2027.

As part of the EQUIP Project, a webinar titled "Psychotropic Use in People with Intellectual Disabilities - How Evidence from the EQUIP Study can Inform and Support Policy and Practice" was held to disseminate the project’s key findings. The event explored the implications of these findings and discussed how they can inform and shape future policy and practice to enhance health outcomes and improve the quality of life for older adults with intellectual disabilities.

On 30th May 2024 TCAID members spoke at a one-day conference organised in partnership with St. Joseph’s Foundation in Cork. The event aimed to utilise findings from five waves of IDS-TILDA, to inform and support an evidence-based approach to St. Joseph’s Foundation’s future strategic planning.The conference provided a platform for knowledge exchange and facilitated discussions on how to integrate research findings into daily operations, thereby enhancing the quality and effectiveness of services provided by St. Joseph’s Foundation.

Trinity Centre for Ageing and Intellectual Disability were delighted to host the Horizon 21 consortium, an international research group that aims to identify and prevent the factors influencing the development of Alzheimer’s Disease in people with Down Syndrome.

Prof Mary McCarron presented an inagural lecture at Queens University Belfast, where she shared her inspiring journey as a nurse, academic, and leader dedicated to enhancing the lives of individuals with intellectual disabilities across the globe. This lecture follows on from her appointment as an honary professor at Queens School of Nursing and Midwifery last year.

Insufficient data on the oral health of people with intellectual disabilities contributes to health disparities, disease burden and often leads to oral disability. In March Katrina Byrne, PhD student and RNID, and Dr Caoimhin Mac Giolla Phadraig, Assistant Professor, led a training day with a group of nurses working in Intellectual disability services and dental professionals on the Modified Oral Status Survey Tool (MOSST), which aims to empower RNIDs to collect valid and reliable data on oral health and oral health needs within their services.

Intellectual Disability Nurse, Dr. Darren Fitzpatrick, collaborates with Trinity Centre for Ageing and Intellectual Disability in the area of constipation and ageing with an intellectual disability. Dr. Fitzpatrick has published in the Journal of Intellectual and Developmental Disability with Dr Eilish Burke, Prof Mary McCarron and Prof Philip McCallion.

Explore the latest research highlights at the Trinity Centre for Ageing and Intellectual Disability. Uncover key events from 2023 for insights and advancements in the field of Ageing and Intellectual Disability

IDS-TILDA formally launched its fifth report on 29th November 2023 at Trinity Biomedical Sciences Institute. The report was launched by Anne Rabbitte TD, Minister of State at the Department of Health and at the Department of Children, Equality, Disability, Integration and Youth. People aging with an intellectual disability are in better health, living in their communities, with more opportunities, and having greater control in how they live their lives but womens health, oral health and dementia findings concerning

Supported by supervisors Dr Eilish Burke and Mr Paul Keenan, Louise completed her MSc in Ageing Health & Wellbeing in Intellectual Disability in Trinity College Dublin in 2022 and delivered an oral presentation on her dissertation on Healthcare Staffs Experiences of Supporting Older Adults with an Intellectual Disability who are in Pain – A Systematic Review at the Trinity Health & Education international Research conference 2023. Louise has continued to disseminate this research at conferences including the Nurse Midwifery Practice Development - Dublin South, Kildare Wicklow Annual Nursing & Midwifery Regional Conference, where her poster presenting her dissertation won 2nd prize. Read more about her research.

The menopause is part of each and every woman’s life and yet unique to each woman, there are common and varying symptoms and changes experienced in different ways over different time periods, again all unique experiences. However, one underpinning fact is that we need to talk about it, we need to educate ourselves our families our friends and colleagues. Unfortunately, our knowledge and understanding of the menopause among women with intellectual disability is limited. All too often they were marginalised and omitted from research in this area. However, the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing collect data on women and women’s health including menopause and this summer were invited as key speakers in a mainstream symposium A conversation about women’s health at menopause.

The Trinity Centre for Ageing and Intellectual Disability officially launched its five year strategy on Thursday, 6th April 2023. This strategic plan will shape the future of the Trinity Centre for Ageing and Intellectual Disbility to benefit people who are ageing with an intellectual disability, their caregivers, Irish Society, and the wider world. The strategic plan called Adding Life to Years -Building better lives for people ageing with an intellectual disability through research and partnership contributes to Trinity College Dubins mission to respond with creativity and imagination to the formidable challenges faced by people with an intellectual disability in leading longer healthier lives. This strategy challenges the health inequalities for people with an intellectual disability as they age by shining a light on health and well-being issues.The strategy is a testament to the past work and the future intentions of the Centre.

Complex Joy? A Celebration of Brain Health in People with Down Syndrome.

The Trinity Centre for Ageing and Intellectual Disability (TCAID) and the National Disability Authority (NDA) formally launched this report which highlights serious limitations in terms of policy, funding & absence of clear national policy to guide ID service delivery.

On International Day of Persons with Disabilities, TCAID celebrated the abilities of people with an Intellectual Disability and highlighted the value and benefits of inclusion. Ms Mei Lin Yap and Ms Christina Corr met with the Provost to talk of their experience about what it is like to work in Trinity College Dublin, their respective roles and career development in TCAID and the impact it has on their lives.

The Health Fair is part of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing and incorporates several objective health measure assessments with participants of the IDS-TILDA study.

The proposed project activities will translate IDS-TILDA recommendations into practical and scalable resources to enhance and visibly increase COS-based person-centred supports for individuals with intellectual disabilities. This award presents an opportunity to make a huge difference to how people with intellectual disabilities are supported to shape their own future and pursue their life’s ambitions.

For Palliative Care Week 2022, The Trinity Centre for Ageing and Intellectual Disability (TCAID) hosted an online webinar - End of Life Care for People with Intellectual and Developmental Disabilities on Tuesday 13 September 2022 at 14:00 - 15:15pm via Zoom. Prof. Mary McCarron launched the book End of Life and People with Intellectual and Developmental Disability - Contemporary Issues, Challenges, Experiences and Practice. Dr. Karen Ryan delivered the keynote on The Process of Dying.

TCAID had the pleasure of a visit from Dr. Michelle Scotton Franklin of Duke University who kindly wrote a lovely reflection about her experience.

Polypharmacy, the use of multiple medicines, has been an identified issue for people with intellectual disability since the inception of IDS-TILDA. IDS-TILDA has a long-standing collaboration with the School of Pharmacy and Pharmaceutical Sciences who are investigating all things pharmacological within the study.

Ms Lara Romero-Hentrich, Transition Year Student, St. Kilian’s German School undertook her work experience at the Trinity Centre for Ageing and Intellectual Disability and outlines her experience of visiting Avista

At a recent Seanad Eireann Debate on 9th March 2022, Prof Mary McCarron, Executive Director and Prof Sean Kennelly, Clinical Director of the National Intellectual Disability Memory Service were acknowledged for the significant work they have done around brain health and dementia. This was preceded by the All Party Oireachtas Group Brain Health and Dementia Briefing in Leinster House on 8th March 2022 where political representatives heard from speakers Professor Mary McCarron, Professor Sean Kenneally Professor Iracema Leroi, Mr Kevin Quaid, and Ms Samantha Taylor about the importance of Brain Health.

A highlight of the Trinity Health and Education International Research Conference 2022 was a symposium focusing on the involvement of people with intellectual disabilities in research. This session included presentations from Dr Karen Mogendorff, advisor participation in research, Healthy Ageing with Intellectual Disabilities (HA-ID), Erasmus MC, Rotterdam, The Netherlands, and Ms Christina Corr, research assistant at the Trinity Centre for Ageing and Intellectual Disability. The symposium was very interactive, with a lively and in-depth discussion about including people with intellectual disabilities in research, both as participants and as researchers. Read more.

Ms. Una Coates is an online Operation Transformation Leader 2022. She is from Clondalkin and is an active member of Inclusion Ireland and the Special Olympics.Una aims to inspire her peers and colleagues with her leadership and her journey. She is very proud of taking part and is delighted with the example she is setting for others and other Special Olympian athletes in Ireland.To show support for her journey and to acknowledge the leadership Una is demonstrating the Trinity Centre for Ageing and Intellectual Disability (TCAID) held a physical activity class at the Trinity College Dublin Sports Centre on Tuesday 15th February 2022. Una attended with her colleagues and friends from Stewarts Care Ltd. and Special Olympics. She found the event exhilarating and was delighted with the show of support for her inspiring journey.

International collaboration enables researchers to access additional, often specific, expertise, gain new perspectives on research and build relationships with others in the field, which for early stage researchers can be key to career development. TCAID was honoured to welcome Ms Laura Garcia Dominguez to Ireland form University of Salamanca to undertake a research internship under the supervision of Professor Mary McCarron.

Digi-ID is a pan-European partnership that addresses the challenge of digital inclusion and digital literacy among people with intellectual disabilities. Digi-ID is an EIT Health funded multidisciplinary project involving partners from Ireland, France, Sweden, and The Netherlands who are experts in education, health, and technology. The project is developing an innovative digital skills education programme, delivered via an accessible solution/app, using an inclusive co-creation process with approximately 250 adults with intellectual disability, supporters, professionals and families/carers.

As part of Palliative Care Week, Trinity Centre for Ageing and Intellectual Disability (TCAID) hosted online webinar with the support of AIIHPC - Supporting people with an intellectual disability at end-of-life: Making the care conversation meaningful

COVID-19 placed enormous strain on health systems around the world, undermining the mental health and wellbeing of healthcare workers. Anecdotal accounts from intellectual disability services suggested that there were significant pressures on staff, as the public health restrictions imposed on vulnerable people resulted in changes to routines, staffing and work patterns. Furthermore, the fact that many people with intellectual disabilities have increased vulnerability to more negative effects of COVID-19, with significantly higher mortality rates, caused considerable concern. It was against this backdrop and a dearth of research on the mental health of staff working with people with intellectual disability that this study was undertaken

Rosemary is a registered pharmacist and joined IDS TILDA in Autumn 2016. She commenced her PhD in 2017 with IDS TILDA and the School of Pharmacy and Pharmaceutical Sciences, Trinity College Dublin under the supervision of Associate Prof Martin Henman and Assistant Prof Maire O’Dwyer. Rosemarys research focuses on medication use associated with mental health and behavioural problems in older adults with epilepsy and an intellectual disability in Ireland.

Dr Maureen Death is a Research Fellow with School of Psychology, NUI Galway and the School of Nursing and Midwifery, Trinity College Dublin. Maureens research interests are health inequalities , health assessments and intellectual disability. Maureen completed her PhD with IDS TILDA in 2021 and her research focused on Family Carers of Older People with Intellectual Disability in Ireland and the Social Policy Context of their Caregiving.

The Trinity Centre for Ageing and Intellectual Disability values diversity in the workplace, as it adds strength to the overall research team, providing opportunities, which promotes success and learning, strengtening the path of research. The benefits of being in employment are well documented, however, unemployment is a critical issue for people with intellectual disability. Professor Mary McCarron was awarded the inaugural HRB Impact Award in 2019, which has enabled the Trinity Centre for Ageing and Intellectual Disability to provide specific employment opportunities to people with an intellectual disability. Supported by Ms Holly Dennehy, Christina joins Ms Mei Lin Yap, Ambassador Liaison Officer to discuss Christinas new role with the centre and what Christina and Mei Lin like to do in their spare time to keep their brains healthy.

Andrew studied psychology and economics at Trinity College Dublin, before completing a PhD in Psychology at Cardiff University and has worked as a researcher at University College Cork (at the Department of Psychiatry and Neurobehavioural Science, and APC Microbiome Ireland) and at Maynooth University (at the Department of Psychology). Andrew is the current chair of the Irish Research Staff Association and the communications officer of Trinity Research Staff Association. Click here to read our interview with Andrew where he discusses his interest in dementia in people with ID, the impact he would like his research to have, his interests outside TCAID and what hes looking forward to post COVID-19

Get Wise About Your Health is an EIT Health funded citizen engagement project and has been developed as a solution to promote the knowledge and confidence of individuals with intellectual disability about managing their own health. Get Wise is a digital health education platform, which has been co-created and co-developed by people with intellectual disability, together with researchers from Trinity College Dublin and Erasmus MC in the Netherlands. The course is aimed at individuals with intellectual disability to learn more about keeping healthy. The first module is ‘Get Wise About Visiting the Doctor’ which will provide the learner with experiences on how to prepare, what to expect and how to get the best out of the experience. The second module is ‘Get Wise About Your Bone Health’ which provides the learner with useful hints and tips on how to keep their bones healthy. The material is delivered using reasonable adjustments and easy read. Due to COVID-19, initial data collection plans were no longer feasible and all data collection was moved to online interviews. Click here to read more about Get Wise.

Brendan is a PhD student with the Trinity Centre for Ageing in Intellectual Disability (TCAID). The focus of his dissertation is social frailty among older adults with an ID. Brendan is a Teaching Fellow on the Intellectual Disability Programme in the School of Nursing and Midwifery, Trinity College Dublin. Further to obtaining a BSc in Intellectual Disability Nursing, he successfully completed a MSc in Intellectual Disability Nursing Practice.