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The Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) Wave 4, 2019-2020. 

Study number (SN): 0073-06

CITATION 

ABOUT THE STUDY 

The Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) is a longitudinal study researching ageing in Ireland among people with an intellectual disability aged 40 and over. This study is the first of its kind in Europe, and the only study able to directly compare the ageing of people with an 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 contribute to the lives of people with intellectual disability.

The objectives of IDS-TILDA are:

• to understand the health characteristics of people ageing with an intellectual disability;
• to examine the service needs and health service utilization of people ageing with an intellectual disability;
• to identify disparities in the health status of adults with an intellectual disability as compared to The Irish Longitudinal Study on Ageing’s (TILDA) findings for the general population; and
• to support evidence-informed policies, practices and evaluation.

IDS-TILDA Wave 4 provides much needed data on the health, social, economic and environmental circumstances of 739 people as they grow older and how their circumstances change over a period of time.

Data Creator: Prof. Mary McCarron, Principal Investigator, IDS-TILDA, Trinity Centre for Ageing and Intellectual Disability, School of Nursing and Midwifery, Trinity College Dublin.

Funding Organisation: Health Research Board Grant No. IDS-TILDA- 2018-1

In adherence with the principles and goals of Open Science (Health Research Board, 2021; Trinity College Dublin, 2020), IDS-TILDA seeks to make its data openly available. The dataset titled ‘Wave 4 IDS-TILDA dataset_V1.0’ is a pseudonymised version of the dataset used in the full report ‘Understanding the impact of COVID-19 on the health and well-being of older adults with an intellectual disability in Ireland’. In order to comply with the HRB’s request to make the data available, while making sure that the identities of IDS-TILDA participants remain protected, an extensive data de-identification process was undertaken during which a number of variables had to be excluded from the dataset due to personal identification concerns.  

MAIN TOPICS 

• Ageing
• Intellectual impairment
• Social participation
• Personal choice
• Health
• Health status
• Physical health
• Mental health
• Physical disabilities

COVERAGE, UNIVERSE, METHODOLOGY 

Population 

Individuals with Intellectual Disability aged 40 years and older in the Republic of Ireland.

Observation units 

• Individuals

Temporal coverage 

From 09/2019 to 09/2020

Time dimension  

Longitudinal study

Geographical coverage 

Country: Ireland

Methods of data collection

• PAPI (Paper and Pencil Interviewing)
• CAPI (Computer Aided Personal Interviewing)

Sampling procedures 

Based on a pre-defined sampling frame or frames from which the sample was drawn.  

Random, meaning that at some or all stages of the sampling simple random sampling (or equivalent was employed)

The IDS-TILDA sample was drawn randomly from the population of adults aged 40 years and above on the National Intellectual Disability Database (NIDD). At the time of the Wave 1 interviews, the NIDD was an administrative database managed by the Health Research Board (HRB) and contained information on people with an intellectual disability in the Republic of Ireland who are registered with a service provider. For recruitment of the original sample at Wave 1, the dataset contained 26,066 individuals (Kelly et al. 2010). From this, the inclusion criterion of being aged 40 years across all levels of intellectual disability and living circumstances was applied. In total 1,800 individuals were randomly selected by NIDD staff; just over 1,600 of these were provided information and asked to participate in the study and 200 were kept in reserve. Written consent was obtained from 753 individuals (a 46% response rate), either directly by self-consenting individuals (38%, n=285) or by a family member or guardian for those who were unable to self-consent (62%, n=468). The final Wave 1 sample was demographically and geographically representative of the target population within the NIDD; it equated to 8.9% of the total eligible population at the time. Please note that the NIDD is now known as the National Ability Support System (NASS). In Wave 4, a sample refresh was conducted using a similar strategy to ensure the sample remained representative. 233 new participants were recruited in total giving the final sample size of 739.

Response rate 

 There are 739 observations in the dataset.

DATA AND DOCUMENTATION: FILES’ DESCRIPTION  

Data (available through ISSDA application process) 

Documentation (available for download) 

LINKS 

For more information about IDS TILDA and TCAID please visit:

https://idstilda.tcd.ie/

https://www.tcd.ie/tcaid/

Publications of IDS TILDA:

McCarron, M., McCausland, D., Allen, A., Luus, R., Sheerin, F., Burke, E., McCallion, P. (2020). The impact of COVID-19 on people ageing with an intellectual disability in Ireland. Retrieved from Dublin: https://www.tcd.ie/tcaid/assets/pdf/wave4idstildareport.pdf

ACCESS INFORMATION 

Accessing the data 

To access the data, please complete a ISSDA Data Request Form for Research Purposes - Pseudonymised Datasets, sign it, and send it to ISSDA by email.

Data will be disseminated on receipt of a fully completed, signed form. Incomplete or unsigned forms will be returned to the data requester for completion.

Copyright 

Copyright and all other intellectual property rights relating to the data, and any documentation concerning the collection of IDS-TILDA data, are vested in The Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing and Trinity College Dublin.

Acknowledgements

Any work based in whole or part on resources provided by the ISSDA, should  acknowledge: “The Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA)" and also ISSDA, in the following way: “Accessed via the Irish Social Science Data Archive - www.ucd.ie/issda”.

Citation requirement 

The data and its creators shall be cited in all publications and presentations for which the data have been used. The bibliographic citation may be in the form suggested by the archive or in the form required by the publication.

Bibliographical citation 

IDS-TILDA. (2024). IDS-TILDA Wave 4, 2019-2020. [dataset]. Version 1. Irish Social Science Data Archive. SN: 0073-06. https://www.ucd.ie/issda/data/idstilda/ids-tildawave4/

Notification

The user shall notify the Irish Social Science Data Archive of all publications where she or he has used the data.