Trinity Centre for Ageing and Intellectual Disability

Longitudinal Dynamics in the Ageing of People with an Intellectual Disability: How Evidence from IDS-TILDA can Inform and Support Strategic Planning and Service Delivery; in partnership with Donegal HSE Disability Services

23rd October 2024

In September, Donegal HSE Disability Services and the NMPDU, in partnership with the Trinity Centre for Ageing and Intellectual Disability, hosted a one-day conference: Longitudinal Dynamics in the Ageing of People with an Intellectual Disability: How Evidence from IDS-TILDA can Inform and Support Strategic Planning and Service Delivery. The event focused on integrating evidence-based insights into key services, exploring crucial topics like multimorbidity, physical health trajectories, and brain health among people with intellectual disabilities as they age. The day included rich discussions on social inclusion and how this data can shape future strategic planning within disability services.

HSE Intellectual Disability Services IDS-TILDA Conference

Following the conference, the HSE prepared a short video showcasing the day, which you can watch here:

HSE Intellectual Disability Services IDS-TILDA Conference

You can also view the full conference here:

Unlocking the Causes of Health and Ill Health for People With ID as they Age: Evidence from IDS-TILDA

13th September 2024

Ahead of the one-day conference "Longitudinal Dynamics in the Ageing of People with an Intellectual Disability: How Evidence from IDS-TILDA Can Inform and Support Strategic Planning and Service Delivery" , hosted in partnership with Donegal HSE Disability Services and NMPDU, Professor Mary McCarron appeared on Highland Radio to discuss key findings from IDS-TILDA and to highlight the event taking place later that day.

Professor Mary McCarron Discusses IDS-TILDA Findings on Highland Radio Ahead of Donegal Conference on Strategic Planning and Service Delivery

Unlocking the Causes of Health and Ill Health for People With ID as they Age: Evidence from IDS-TILDA

27th April 2024

This april, Professor Mary McCarron presented her talk "Unlocking the Causes of Health and Ill Health for People With ID as they Age: Evidence from IDS-TILDA" for 60 attendees in Kilcullen at "Healthy Living for People With Intellectual Disabilitiy", presenting findings from IDS-TILDA to provide practical advice, supported by research, on empowering older people with ID to enjoy a more healthy life.

Unlocking the Causes of Health and Ill Health for People With ID as they Age: Evidence from IDS-TILDA

In 2008, Ireland became the first country in the world to roll out a prolonged national study of how people with ID, aged 40 and over, experience life. For over a quarter century, the results of IDS-TILDA have allowed policy-makers, researchers and the public to make direct comparison between those ageing with ID and their peers in the general population. Professor McCarron speaks on the evidence of IDS-TILDA and how research can support the empowerment of people with ID to live a more healthy life.

Enhancing Medicine Use in Older Adults with Intellectual Disabilities - Lamya Al Shuhaimi

16th July 2024

PhD student Lamya Al Shuhaimi shared her research findings from her study titled 'Enhancing Medicine Use in Older Adults with Intellectual Disabilities' at the 2024 3 Minute Thesis competition at Trinity College Dublin. Her research focuses on the adverse effects of long-term anticholinergic use in older adults with intellectual disabilities. At this highly competitive event, where eight skilled speakers each had three minutes to present their research using a single slide, Lamya was awarded both the Runner-Up and People's Choice Award.

Enhancing Medicine Use in Older Adults with Intellectual Disabilities - Lamya Al Shuhaimi

PhD Student Lamya Al Shuhaimi presents her findings from her phd research entitled 'Enhancing Medicine Use in Older Adults with Intellectual Disabilities' which considers the adverse effects associated with long-term use of anticholinergics amongst older adults with intellectual disability

Psychotropic Medicines for Your Mental Health and The People Who Take Them

15th May 2024

The EQUIP Steering group members with intellectual disability along with the PPI panel in TCAID, developed and stared in a video about the EQUIP project. The video includes information on what psychotropic medications are as well as some of the findings from the EQUIP project. We hope you enjoy the video.

Psychotropic Medicines for Your Mental Health and The People Who Take Them

Tallaght University Hospital's "Let's Talk About Down Syndrome" podcast series- Episode 4

5th May 2024

We are delighted to announce the release of the fourth episode in Tallaght University Hospital's "Let's Talk About Down Syndrome" podcast series! Join Geraldine Kyle, a registered nurse tutor at TUH and mother of a young adult with Down syndrome, as she hosts an insightful conversation with Professor Sean Kennelly and Evelyn Reilly from Tallaght University Hospital’s National Intellectual Disability Memory Service.

Key Highlights:

◾ Dementia and Down Syndrome: Professor Kennelly explains the significant link between Alzheimer's disease and Down syndrome, attributing it to the extra chromosome 21 that codes for amyloid protein, leading to a higher risk and earlier onset of Alzheimer's in individuals with Down syndrome.

◾ Early Signs and Risks: Subtle changes in behaviour, memory, and physical abilities can indicate the onset of dementia. Addressing risk factors like visual and hearing impairments, maintaining physical activity, and managing conditions like thyroid disorders and sleep apnoea can promote better brain health.

◾ National Intellectual Disability Memory Service: Evelyn Reilly discusses Ireland's first dedicated memory clinic for individuals with intellectual disabilities, established in 2020. The clinic provides comprehensive services, including diagnostic assessments, rapid referrals, case management, post-diagnostic support, and research opportunities.

◾ Baseline Screening: Emphasizing the importance of baseline screening for individuals with Down syndrome over the age of 35 to monitor changes over time and distinguish between dementia and other mental health issues.

◾ Research and Future Directions: The clinic aims to expand research networks and participate in clinical trials to develop effective dementia interventions, offering hope for managing Alzheimer's disease in the Down syndrome population.

Tallaght University Hospitals "Lets Talk About Down Syndrome" podcast series- Episode 4

Geraldine Kyle, a registered nurse tutor at TUH and mother of a young adult with Down syndrome, hosts an insightful conversation with Professor Sean Kennelly and Evelyn Reilly from Tallaght University Hospital’s National Intellectual Disability Memory Service. Join us in spreading awareness and supporting the health and well-being of individuals with Down syndrome

Tallaght University Hospital's "Let's Talk About Down Syndrome" podcast series- Episode 5

5th May 2024

We're thrilled to share the fifth episode of Tallaght University Hospital's "Let's Talk About Down Syndrome" podcast series! In this episode, Geraldine Kyle, a registered nurse tutor at TUH and mother of a young adult with Down syndrome, interviews Professor Mary McCarron, an expert in ageing and intellectual disability. In this episode Prof. McCarron shares her thoughts on important ways that healthcare staff can support the health needs of people with Intellectual Disability including Down syndrome.

Key Highlights:

◾ IDS-TILDA Study: Ireland's ground-breaking inclusion of individuals with intellectual disabilities in ageing studies.

◾ Health Insights: Findings on the unique health needs of adults with Down syndrome, including early onset of chronic conditions and social determinants of health.

◾ Living Fulfilling Lives: Individuals with Down syndrome are now leading more enriched lives, actively participating in communities, schools, and employment.

◾ Women’s Health: A focus on the health disparities faced by women with Down syndrome, emphasising the need for better resources and understanding of menopausal health.

◾ Transitioning Care: Addressing the critical transition from children's to adult services and ensuring continuous, age-appropriate care.

Tallaght University Hospitals "Lets Talk About Down Syndrome" podcast series- Episode 5

Geraldine Kyle, a registered nurse tutor at TUH and mother of a young adult with Down syndrome, interviews Professor Mary McCarron, an expert in ageing and intellectual disability who shared her thoughts on important ways that healthcare staff can support the health needs of people with Intellectual Disability including Down syndrome.

Empowering Voices: Women with Down Syndrome Speak on Health #WDSD2024

21st March 2024

World Down Syndrome Day 2024 is an international awareness day for people with Down syndrome. The theme for this year’s World Down Syndrome Day is to End The Stereotypes.

To mark this occasion, we decided to focus on women with Down syndrome to raise awareness of the poor health outcomes often faced by these women. We asked women with Down syndrome from all over the world to tell us what health means to them. We wanted to hear from the women themselves how they take care of their own health and what is important to them and how they choose to End the Stereotypes each day.

Empowering Voices: Women with Down Syndrome Speak on Health #WDSD2024

Through sharing their experiences from different countries, women with Down Syndrome share their thoughts on what health means to them.

Read more here

Transforming Health Care Delivery: Launching the National Intellectual Disability Memory Service

6th March 2024

The IDS-TILDA team were winners of the Group entry category in the first Research Impact Case Study Competition at the School of Nursing & Midwifery, for thier case study entitled 'Transforming Health Care Delivery: Launching the National Intellectual Disability Memory Service'.

Transforming Health Care Delivery: Launching the National Intellectual Disability Memory Service

The NIDMS team and a family carer, discuss the launch of the National Intellectual Disability Memory Service (NIDMS), a centre of excellence in proactive dementia assessment and diagnosis for people with an intellectual disability.

Empowering Healthcare: From Research to Practice in Intellectual Disability Health Assessment

6th March 2024

Dr Eilish Burke is the winner of the Individual entry category in the first Research Impact Case Study Competition at the School of Nursing & Midwifery, for her case study entitled 'Empowering Healthcare: From Research to Practice in Intellectual Disability Health Assessment'.

Empowering Healthcare: From Research to Practice in Intellectual Disability Health Assessment

Dr. Eilish Burke discusses the prevalent health disparities and underscores the crucial significance of enhancing health assessments specifically tailored for individuals with intellectual disabilities.

Building Circles of Support for People with Intellectual Disabilities

7th December 2023

Building Circles of Support for people with Intellectual Disabilities, a knowledge translation award project funded by the Health Research Board (HRB), aims to demonstrate examples of good practice in Circles of Support through case studies of positive lived experiences of participants with intellectual disabilities and the people in their Circles of Support.

Building Circles of Support for People with Intellectual Disabilities

This HRB-funded Knowledge Translation Award project aims to showcase positive examples of support for individuals from their Circles of Support and the strategies they have used to build and maintain those relationships.

Find the individual videos here:

Building Bridges for Better Brain Health, from the Halfpenny to the Golden Gate

24th September 2021

This initiative connected people with Down syndrome and their families in Ireland and San Francisco to discuss brain health, with the aim of promoting participation in research and increasing awareness of brain health in this population.

This also promotes participation of the people with Down syndrome and their families in the research process and, specifically, it provides an opportunity for PPI contributors to input into the design and delivery of the project. It will give the people most directly affected by the research more of a voice in the research itself.

Building Bridges 2021

Through sharing their experiences from different countries, awareness of brain health was raised and a space for shared and peer learning was created.

Read more here

First HRB Impact Award recognises Professor Mary McCarron

8th February 2019

The Health Research Board has presented the first HRB Impact Award 2019 to Professor Mary McCarron, from Trinity College Dublin. The award recognises how her research has transformed the health, care, and living environments for people ageing with an intellectual disability.

HRB Impact Award 2019

The legacy I want to leave is that we have the services and supports available so that every person with ID will experience happy and healthy lives in old age.

- Professor Mary McCarron

Read more here

Ageing with PrIDe - Learning from Ten Years of IDS-TILDA

4th December 2018

Over the past ten years, the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) has been researching the lives of people with an intellectual disability who are ageing in Ireland. Join Mei Lin Yap as she discusses the findings with Prof Mary McCarron, the Principal Investigator to IDS-TILDA in the Trinity Centre for Ageing and Intellectual Disability. Mei Lin also explores what kinds of activities she can do to stay healthy as she ages.

Speakers:Prof Mary McCarron, Mei Lin Yap, Jasmine Russell, Claire Corcoran, Dr Caoimhin Mac Giolla Phadraig, Dr Eric Lacey, Evelyn Reilly

Ageing with PrIDe

So, when you start talking about dementia, I want to be included in that conversation. I want to be included in the conversation about my future. I want to be empowered so that I can choose how to reduce the risk of dementia.

- Mei Lin Yap

Celebrating 10 years of IDS-TILDA

19th October 2017

On the 19th of September 2017, more than 300 people visited Trinity College to celebrate the 10th Anniversary of IDS-TILDA and to recognise its outstanding achievements to date, including 150 research participants. See highlights from the 10th Anniversary celebration and the 2017 Summit on Ageing with an Intellectual Disability below.

Celebrating 10 years of IDS-TILDA

IDS-TILDA has been at the forefront of research on ageing and intellectual disability, recognised not only in Ireland, but also internationally as leading the way in research for people with an intellectual disability

- Fintan McGrath, TD - Minister of State for Disability Issues

Trinity College Dublin, The University of Dublin

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