€1.75M HRB award for further research into ageing and intellectual disability

Posted on: 23 January 2025

Researchers at IDS-TILDA - the intellectual disability supplement to the Irish Longitudinal Study on Ageing (TILDA), led by Professor Mary McCarron (pictured), at the School of Nursing and Midwifery - have been conducting research into ageing and intellectual disability for 18 years. This prestigious and deserved award of €1.75M in continued funding from the Health Research Board paves the way for the next phase of this vital research: to provide valuable data to inform evidence-based policies and practices to support people with intellectual disabilities, their family, friends and healthcare professionals.

The award follows a positive evaluation by the board of the HRB and reflects the continued importance of the IDS-TILDA study in addressing health inequities faced by adults with intellectual disabilities as they age.

The IDS-TILDA  study is the first of its kind in Europe, and the only study able to directly compare the ageing of people with intellectual disability with the general ageing population.

The underpinning values of IDS-TILDA are inclusion, choice, empowerment, person centred, the promotion of people with intellectual disability, the promotion of best practice and to make a contribution to the lives of people with intellectual disability.

Objectives of IDS-TILDA

• To understand the health characteristics and status of persons with intellectual disability as they age (from the age of 40 years)
• To examine the service needs and health service utilization of older persons with intellectual disability as compared to the general population
• To identify disparities in the health status of older persons with intellectual disability as compared to findings yielded by TILDA for the general population
• In preparation for longitudinal follow-up, to determine potential
• Risk factors for ill health
• Facilitators of good health and longevity
• Biological and environmental components of successful ageing

Professor Mary McCarron, Professor of Ageing & Intellectual Disability and the founder and Principal Investigator of IDS-TILDA, said:

“I am truly honoured to announce that the Health Research Board (HRB) has awarded €1.75 million to further support the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA). This significant funding will enable us to continue our research into the ageing experiences of individuals with intellectual disabilities in Ireland.

“IDS-TILDA has provided invaluable insights into the challenges and improvements in the lives of people with intellectual disabilities as they age, and the additional funding will allow us to deepen our understanding of their unique health and social needs. This includes exploring important new areas such as assisted decision-making, employment, women’s health, relationships, autism, and screening. We will also expand our physical health assessments to include gait analysis, gut microbiome, oral microbiome, and blood spot testing.

“Patient and Public Involvement (PPI) will remain at the heart of this project, with people with intellectual disabilities actively involved at every stage of the research cycle. This collaborative approach ensures that the voices of those we seek to support are embedded in the research process from start to finish.

This project remains a global leader in its field, addressing critical issues such as health inequities, access to services, and the importance of community integration. Our findings have already contributed to key policy changes, and with this new support, we will continue working to improve the quality of life for individuals with intellectual disabilities, ensuring they can age with dignity and pride. I am grateful for the continued collaboration with our research partners, families, service providers, and government agencies, and we are committed to delivering evidence-based recommendations that will guide future policy and practice.”

IDS-TILDA has developed a significant body of expertise in the field of ageing and intellectual disability over 18 years, and is associated with a growing number of interdisciplinary investigators, students and co-researchers with intellectual disabilities.

The HRB’s award decision recognised all of these partnerships, as well as the policy and practice implications of the work, its research rigour and its international significance.

MORE INFORMATION: You can find out more about IDS-TILDA by following this link: https://idstilda.tcd.ie/about/

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