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Novmeber Ezine
The Trinity EngAGE Novemeber 2016 Ezine featuring IDS-TILDA is now available by clicking here.


Tallaght Hospital Bone Health Day
A Metabolic Bone Biochemistry and Medicine Bone Health Day was held in the Trinity Centre for Health Sciences, Tallaght Hospital, chaired by Dr Gerard Boran, Consultant Chemical Pathologist. Experts discussed recent medical advances and research in the study of bones. Ms Eilish Burke (Project Manager IDS-TILDA) presented her work on the bone health of adults with intellectual disability. In her study she identified and discussed the higher risk burden people with intellectual disability experience. She has identified levels of risk factors such as anti-epileptic medication use, poor physical activity levels, and rate of menopause among women at rates that would impact on bone health. Despite these high risks reported doctor’s diagnosis was 8.1% however rates for DXA screening were low at 16.8% with just 11.1% of those having had screening within the last 2 years. The most significant factor to impact on attendance for screening was mobility issues. An examination of the calcium and vitamin D supplementation for those with a diagnosis of osteoporosis revealed that 3 in every 10 with a diagnosis of osteoporosis were not prescribed these preventative measures. Further examination of the data will explore this important issue further. To read more information on bone health and intellectual disability follow this link to view article.



Congratulations to Lorraine

LorraineCongratulations to Ms Lorraine Keating on her recent achievement. Lorraine successfully completed two courses in the Cross Care Community College. The first was on knitting craft and the second on creating writing. Lorraine is an avid knitter and has created many beautiful knitted crafts from blankets to scarves. Lorraine is also an achieved writer having previously published in the British Journal of Learning Disabilities






‘A night in the old library’
IDS-TILDA Making Ireland the best place to grow older

Old LibraryThe Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA) is a large scale nationally representative study of people with an intellectual disability aged 40 years and over in Ireland and the first study in the world to have been conducted in tandem with a general ageing study. Underpinning the study is a very robust inclusion framework that guides each of the research stages. Since its inception IDS-TILDA have adopted and incorporated an inclusionary approach to their total research design, research promotional activities, data collection and research dissemination. People with ID have designed the logo, through photography shown us what ageing means to them, designed the greetings cards used in the study, reviewed and contributed to the questionnaire, reviewed all the accessible material, reviewed the data collection process and advised on improving the collaboration between the study and those with ID. People with ID have even disseminated the research results through the medium of drama and film. ]

The event on October 28th reflects another aspect of the work people with ID do with the study. Wave 1 of the study laid the foundation on which Wave 2 and subsequent waves are and will be built upon. In Wave 2 many respondents reported experiencing good health but there were significant concerns in terms of polypharmacy, mental health concerns, dementia, epilepsy, constipation, arthritis, osteoporosis, urinary incontinence, falls, cancer, and thyroid disease. Women with ID had higher risks for many diseases, both when compared to men with ID and to women in the general population. Nine out of 10 participants (91%) were taking at least one (prescription or non-prescription), medicine. Adults with ID were twice as likely to have significant visual problems and at a much younger age than the general population.  Participants reported that they hardly ever engaged in vigorous physical activity. Prevalence reported for mental health and emotional problems was greater than in the general population. Dementia in persons with Down syndrome doubled over the three year period between Wave 1 and 2. These findings support international concerns that society need to do a better job of facilitating opportunities for people with ID to actually live within the community. As Ireland prepares to move more people with ID from congregated to community settings, there are challenges for all to ensure that this will result in the improved quality of life intended.  Our art competition asked people to submit art work depicting some of these areas, health, physical activity, friends and family, and healthy eating. The winning submissions were chosen as chapter covers for our Wave 2 accessible report. The overall winner was a collaborative piece depicting literacy. As the study moves towards Wave 3 we will continue to work with and for people with ID endeavouring to make Ireland the best place to grow older.




IDS-TILDA Student successful at viva voce

Ms. Maire O’Dwyer sat her final PhD examination last Friday, May 15th. Maire is a pharmacist who completed her study with IDS-TILDA and the School of Pharmacy. The title of her study is “Prevalence, Patterns and Factors associated with Multiple Medicines Use in an Older Population with Intellectual Disability” which examined patterns, prevalence and factors associated with multiple medicine use, psychotropic use and relationship with mental health conditions and factors associated with high anticholinergic burden and associated adverse outcomes. We would like to extend huge congratulations to Maire who successfully defended her PhD and wish her every success in the future. She is continuing her work with the IDS-TILDA study and as her work builds and expands she is contributing greatly to the field of intellectual disability.


The International Association of Gerontology and Geriatrics European Region Congress 2015, Dublin, Ireland - Unlocking the Demographic Dividend

In April 2015, members of the IDS-TILDA team joined gerontologists from many countries and continents in attending the 8th IAGG European Region meeting in Dublin. The wide-ranging programme of over 1100 presentations highlighted the longevity dividend and related advances in knowledge. The IDS-TILDA team presented 13 papers at this important international conference, including 4 oral and 9 poster presentations covering medication usage, social engagement, loneliness, self-determination, deinstitutionalisation, frailty and health concerns of an ageing population with ID.

Oireachtas Joint Committee

On Thursday 16th April Professor McCarron addressed the Oireachtas Joint Committee on Health on the topic of ageing with an intellectual disability. Professor McCarron attended the Committee with IDS-TILDA Project Manager, Eilish Burke, and IDS-TILDA Research Fellow, Maire O’Dwyer, and presented IDS-TILDA findings in the areas of dementia, bone health, accessible information and support for family carers. During the question and answer session Committee members praised the IDS-TILDA study and the valuable information it is providing for policy makers.




Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing presents findings at the Department of Health

In March 2015 Professor McCarron and the IDS-TILDA team presented findings from the IDS-TILDA study to the Value for Money committees at the Department of Health and Children. Key areas highlighted included dementia, osteoporosis, objective health measures, patterns of multiple medicines use, social participation, employment and movement from congregated settings. Both the presentations and the ensuing discussion brought these key ageing issues to the forefront of agendas among these groups and participants emphasised the value of the data IDS-TILDA is generating and its contributions to monitoring and informing policy implementation to improve the lives of people with intellectual disability as they grow older.



IDS-TILDA PhD student presents at the World Congress on Osteoporosis, Osteoarthritis and Musculoskeletal Diseases.

Ms. Eilish Burke (PhD Student) IDS-TILDA had accepted and presented some of her findings at the recent world congress on osteoporosis. There were over 4,500 participants at this important event which has become the largest educational event and most vibrant clinical research forum for osteoporosis, osteoarthritis and musculoskeletal diseases in Europe. Eilish’s research was the only paper at the meeting which focused specifically on osteoporosis among people with intellectual disability bringing the marginalised field of intellectual disability research into the mainstream.  Among findings from the study were that despite high levels of risk and objective evidence that osteoporosis was far greater than in the general study (TILDA) most of the cohort had not engaged in clinical assessment.



Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA) launch Wave 2 findings.

launchMinister of State with responsibility for Disability, Older People, Equality & Mental Health, Kathleen Lynch launched the report of the second wave of the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA) 'Advancing Years, Different Challenges: Wave 2 IDs-TILDA, Findings on the ageing of people with an intellectual disability'.

The report highlights the complex and unique health and social challenges facing people with ID in Ireland. Dean of the Faculty of Health Sciences in Trinity and Principal Investigator of IDS-TILDA, Professor Mary McCarron said: “This is the first time in history we have ever had a population of people with an intellectual disability who have reached old age and this is something that we should celebrate. However, there are a number of very serious health concerns that we need to better understand in this population. Unless we can address some of these challenges older people with ID are likely to live a poor quality of life as they grow older and ageing in poor health is an empty prize.”



International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD) 4th European Congress: Pathways to Inclusion

Vienna, 14-17 July 2014

A strong contingent from the IDS-TILDA team attended the IASSIDD European Congress at the University of Vienna from 14-17 July 2014. This was a major European event presenting and debating the newest advances in research on intellectual disability from around the globe. The topics addressed at the congress followed a structure closely linked to the UN Convention on the Rights of People with Disabilities.

The IDS-TILDA team presented a total of 15 papers throughout this important international conference, including 10 oral and 5 poster presentations. Prof McCarron was invited to present the keynote address on the third day of the conference. Her address presented an overview of the IDS-TILDA project along with key findings from Wave 1 and initial findings emerging from Wave 2.

This keynote address, along with submissions from the rest of the team, ensured a very strong presence from IDS-TILDA throughout the conference. The interest generated in IDS-TILDA from an international audience reinforced the pioneering excellence and unique position of the study on a worldwide stage.


European Success for Former IDS-TILDA Project Manager

Ms Janet Swinburne, PhD student and former Project Manager of the IDS-TILDA study secured a highly competitive in-service training positing at the European Commission. From just over 9,000 applicants from across Europe and non-European countries, Ms Swinburne, an Intellectual Disability Nurse and PhD Student at the School of Nursing &Midwifery TCD, is one of 600 recipients to recently secure such a position at the European Commission. Based in Brussels, Janet will be working with the EC Research and Innovation Department. Her combined practice experiences in policy development and research, post-graduate qualifications in health promotion, health sciences, health service policy, project management, and health law and work within the School and the IDS-TILDA study have provided a solid foundation for this competitive position. Congratulations are extended to Janet from all the IDS-TILDA team for her wonderful success.

IDS-TILDA on the world stage at the IASSID World Congress in July 2012

In July this year the IDS-TILDA team travelled to Halifax, Nova Scotia, Canada and presented 12 papers on the findings from the study thus far. This was a great achievement and showcased Trinity College Dublin and Ireland as leaders in ageing and intellectual disability research. Prof McCarron was also an invited speaker at the ‘State of the Science Conference’ running in tandem with the IASSID conference. Her presentation on Community participation and social inclusion emphasised the road map of change in Irish service delivery and highlighted some of the continuing challenges for people with intellectual disability as they forge a path to live ordinary lives in the community that were reflected in the findings of the first wave or IDS-TILDA. For all the presentations please click on the following links.

IDS-TILDA IASSID Presentations

Multi morbidity Presentation

Health Care Utilisation Presentation

Employment Presentation

Ageing Perceptions and Retirement Presentation

Behavioural Health Presentation

Social Connections Presentation


A Night at the Oscars - Multimedia Launch

Inclusion and participatory research form the cornerstone of the The Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA). To realize this ethos of inclusion the IDS-TILDA team devised a multimedia project entitled 'Getting the Message to the People that Matter; Innovation in Research Dissemination'. This Brendan O'Connor with two of the actorsmultimedia approach in which people with ID are both active participants and comprehending recipients of research offers a dissemination mode that enhances understanding of information and increases access, essential elements of inclusion of persons with ID and a means to advance an emerging international framework for online accessibility. Over the last six months the team have been busy working with amateur actors from Intellectual Disability Services and the National Institute Intellectual Disability creating a movie that depicts some of the findings of the study so far. The scenes from the movie form part of the new IDS-TILDA website. The movie has also been made into a DVD entitled ‘Scenes from Our Lives’. This DVD and the new website were launched at a red carpet event in June. Hosted in the Samuel Beckett Theatre, TCD, all the actors, their families and friends attended the premier. Master of ceremonies for the evening was Mr. Brendan O’Connor who hailed the initiative as cutting edge and praised all the actors for their marvellous achievement.


Art Competition Winner

Competition winner and picture The entries for the art competition were very impressive and the IDS-TILDA team have included the top entrants along with their stories in the inlay booklet of the DVD, ‘Scenes from our lives’.However, there can only be one winner and congratulations goes to Mr. Richard Smyth from Tralee, Co. Kerry for his winning entry to the ‘Design a DVD Cover Competition’. Richard, seen here with his picture, presented a beautifully colourful picture depicting life. The accompanying poems described the thoughts and feelings Richard presents in his artwork.The following is a sample of one of his poem.


"Scenes From Our Lives!"

"'Lobster-Qbjects Identified!'
are 'VIPs!' ,
no 'UFOs!' ... recalling
King Midas does feeding! ...
a dropping-off of! first-meal into mouth!*
averting golden-contact!
'coughing-up milky-substance's'
'band-u-wits!'**: 'sustaining-morsels!'"
[* "The Midas Toucan": my detail!
** Phonetic spelling: In "March of the Penguins"
contents of father penguin's food-sac gives hatched-chick
its first meal &a chance-at-life 'til mum arrives!]
(25-4-'12) Richard Smyth

Again, well done and many thanks to all who contributed. Keep an eye out in our Newsletters for further competitions.



IDS-TILDA Summer Newsletter 2012

IDS-TILDA Easter Newsletter April 2012

Irish Times: Ageing with dignity and disability
January 18th 2012 (reproduced with permission from the Irish Times

Frontline: Announcing IDS-TILDA
2010 (reproduced with permission from Frontline)

IDS-TILDA Newsletter May 2009


Last updated 29 November 2016 by (Email).