IDS-TILDA remembers those who have played a significant role in its research

Posted on: 08 December 2021

IDS-TILDA – ‘one of the most significant studies on the ageing of people with ID in the world’ – hosted commemorative ceremony to respectfully remember participants who have given so generously to the study, on the International Day of Persons with Disabilities

IDS-TILDA is the first nationally-representative longitudinal study on ageing with an intellectual disability (over 40 years of age) comparable to the general population. For more than 10 years, IDS-TILDA has been a leader in meaningfully involving patients, carers, policymakers, and service providers in the development of co-created research and healthcare delivery systems.

The IDS-TILDA team at Trinity hosted a commemorative ceremony, from the Trinity Chapel,  on December 3rd to remember all participants in the study who have passed away. The event allowed an opportune time to reflect and remember the people who shared the details of their lives with IDS-TILDA to benefit others, over the last number of years.

IDS-TILDA works by identifying the principal influences on successful ageing in persons with intellectual disability, and then determines if they are the same or different from the influences for the general population. A second aim of the study is to develop a first wave baseline picture of ageing among persons with intellectual disability and a cohort of subjects that may then be followed longitudinally.

Professor Mary McCarron, Co-Founder and Principal Investigator of the study said:

IDS-TILDA is a research project, but it is also a great unifier to a growing research community and, as a community, we want to show our appreciation for those who have given so generously of their time and talents to advance our understanding of ageing. Tomorrow’s ceremony is about saying ‘thank you’ while also recognising that there is so much more we must do if we are to create a fairer, more equitable, and accessible world for all ages and abilities.

She continued:

It is very befitting on this International Day of Persons with Disabilities to remember and say thank to the 200+ participants who have passed away. Unfortunately, the longevity dividends witnessed for the general population have not occurred for people with Intellectual disability who die on average 20 years earlier than the general or non-disabled population.

We need to do much more to create a fairer and more equitable society and IDS TILDA are endeavouring to understand determinants of health and being and what are the issues that contribute to earlier and higher mortality. We remember people with an ID who have passed away and given so generously of their time to improve the lives of future generations.

This year’s theme for the International Day of Persons with Disabilities is ‘Leadership and participation of persons with disabilities toward an inclusive, accessible and sustainable post-COVID-19 world’.  

As part of 2020-2021 activities, IDS-TILDA is celebrating leadership in two efforts, aimed at advancing more inclusive and accessible health service delivery:

  1. IDS-TILDA Data Informed Strategic Responses to COVID-19 by Government, Service Providers and Carers across Ireland

IDS-TILDA researchers adapted rapidly during the first wave of the COVID-19 pandemic to deliver reliable, trust-worthy information to guide policymakers, service providers, and carers, including:

  • In collaboration with the Health Service Executive, IDS-TILDA created a module for clinical staff on ‘COVID-19 Assessment and Recognition Among People with Intellectual Disability,’ utilising learnings from the IDS-TILDA Health Fair. Hosted on HSELanD, more than 3,750 healthcare professionals in Ireland completed this module.
  • In collaboration with the All Ireland Institute of Hospice and Palliative Care, the Daughters of Charity Disability Support Service, St Francis Hospice, and Tallaght University Hospital, TCAID researchers hosted a seven-part webinar series for carers and service providers to address information gaps, attracting more than 10,000 attendees, and recordings were subsequently viewed more than 6,000 times.
  • IDS-TILDA was invited by the Houses of the Oireachtas to prepare a submission to the Special Committee on COVID-19. In February 2021, IDS-TILDA made a submission to Minister Anne Rabbitte, TD, highlighting the case for accelerated COVID-19 vaccination for people with Down syndrome. Also, in February 2021, IDS-TILDA provided data to support a submission by the Federation of Voluntary Service Providers to Dr Colm Henry, HSE Chief Clinical Officer, and Dr Tony Holohan, Chief Medical Officer, on the urgent vaccination needs of people with intellectual disabilities.  These representations, underpinned by more than 10 years of evidence from IDS-TILDA, helped to inform the decision by Government to classify people with intellectual disability among those at ‘high risk’ of COVID-19, and people with Down syndrome among those at ‘very high risk’ thereby prioritising people with an intellectual disability for vaccination and, subsequently, for boosters.

2. Delivering Ireland’s first National Intellectual Disability Memory Service and Advancing National Dementia Strategy and Sláintecare Strategic Priorities:

  • In 2020, Trinity College Dublin, Tallaght University Hospital, and the Daughters of Charity Disability Support Services signed a memorandum of understanding to develop Ireland’s first National Intellectual Disability Memory Service (NIDMS). Underpinned by IDS-TILDA research and supported by the Health Service Executive, National Dementia Office, and Department of Health, NIDMS was funded through the Dormant Accounts Disbursement Fund.  Professor Mary McCarron serves as Executive Director and Professor Sean Kennelly as Clinical Director and, between August 2020 and February 2021, NIDMS delivered 79 clinics, 40 consensus meetings, and 32 consultations. Based on these activities, NIDMS has collected data which supports:
  • Better Patient Outcomes: Includes patient testimonials on positive experiences of assessment, diagnosis, and the delivery of post-diagnostic supports.
  • Better Experiences of Care: Includes testimonials by patients, carers, and service providers on reductions in feelings of worry and stress, as well as appreciation for timely diagnoses, and the delivery of respite and support services.
  • Continued Development and Supported Staff: Includes recognition by staff on process improvements in the delivery of care, as well as greater equity in accessing services, and changes in local practices due to engagement with NIDMS.

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