The Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA) researches ageing among people with an intellectual disability (ID) aged 40+ years in the Republic of Ireland. The first of its kind in Europe, IDS-TILDA through alignment with The Irish Longitudinal Study on Ageing (TILDA), remains the only study able to directly compare ageing among people with ID with ageing among the general population. Aims IDS-TILDA identifies the principal influences on ageing in persons with ID by examining healthy/successful ageing, determinants of health and longevity, and similarities/differences in ageing among people with ID and the general population. With a baseline established in Wave 1, data collection in subsequent Waves has continued repeated longitudinal data collection. However, IDS-TILDA is a dynamic research project, in which participants’ perspectives are used to refine the research process and survey instruments. Findings from past Waves suggest new areas for investigation. Attention to public policy implementation and proposals suggest ways to enhance the usefulness of data. Longitudinal continuity is balanced with a small number of new topics responding to the changing healthcare and policy landscape, for example, the implications for people with ID as de-congregation is implemented and they transition between residential settings, and attention to COVID-19 during Wave 4. There has also been removal and resting of items, ensuring the overall length of the protocol does not cause unnecessary burden on participants.
IDS-TILDA remains as relevant and much needed now as we plan for Wave 5 as ever before. Consistent with the Wave 5 objectives longitudinal data collection will continue. Continued shared membership across project committees between IDS-TILDA and TILDA also ensures that ongoing examination of ageing among this population in comparison to the TILDA general population remains viable and indeed may be expanded. Coming out of Wave 4, Wave 5 offers the opportunity to continue to document ageing within this population, and track the determinants of health and wellbeing of 506 participants who have been included in the study since Wave 1. It is vital that the opportunity to continue tracking their life course into older age is not lost. Wave 5 will also facilitate further analyses of intergenerational change. We now have two 40 -50 year old generations; those recruited at Wave 1 and a new group recruited in Wave 4, with the opportunity to add additional 40-50 year-olds in Wave 5, so that we in tandem follow the differences and similarities in lives lived in this and future Waves of IDS-TILDA and consider longer term effects of prior Irish policies and strategies for long-term participants with ID. In particular we continue to follow the impact of de-congregation and community living policy within the Congregated Settings report (Health Service Executive, 2011), person-centred approaches to day-service provision outlined in New Directions (Health Service Executive, 2012) and implementation of the ageing strategy (2013). We will also pilot assess long and short-term impact of more recent legislation including assisted decision-making, Slaintecare and carer strategies
