December TCAID: In Focus - Trinity Centre for Ageing and Intellectual Disability 2023 Review
Longitudinal Dynamics in the Ageing of People with an Intellectual Disability - IDS-TILDA Wave 5 Report Launch
On Tuesday, November 28th, 2023, Minister Anne Rabbitte, Minister of State at the Department of Children, Equality, Disability, Integration, and Youth, officially launched the IDS-TILDA Wave 5 report.
The event, attended by over 250 people, took place at the Trinity Biomedical Sciences Institute, Trinity College Dublin.
The event began with a wonderful musical performance by the Viewpoint Self Advocacy Group of Sunbeam House and was inaugurated by Professor Sinead Ryan, the Dean of Research. Professor. Mary McCarron, the Principal Investigator of IDS-TILDA, provided invaluable insights into the latest findings from the Wave 5 report. Members of the IDS-TILDA Health Fair team, along with Mr. Christopher McEvoy, an IDS-TILDA participant, shared their experiences and discussed the Health Fair process. The thought-provoking panel discussion was moderated by the renowned broadcaster, Ms. Olivia O'Leary, and Ms. Mei Lin Yap, Ambassador Liaison Officer at TCAID, concluded the launch with her final remarks.
The Wave 5 report and accessible easy-read version are both available for download on the TCAID website with additional information. Click here to access
Left to right: Mr. Tommy Breen (musical supporter), Ms. Emma Kinsella (musician), Mr. Sean Sheekey (singer), Mr. Eoin Hayden (singer) and Mr. Rob Quinn (musical supporter) from Viewpoint Self-Advocacy Group with Prof. Mary McCarron, PI IDS-TILDA.
Launch of the Trinity Centre for Ageing and Intellectual Disability Strategy 2023 - 2028
The Trinity Centre for Ageing and Intellectual Disability (TCAID) officially launched its five-year strategy 'Adding Life to Years: Building better lives for people ageing with an intellectual disability through research and partnership' on Thursday, 6th April 2023 at the Dublin Chamber of Commerce.
This strategic plan will shape the future of TCAID to benefit people who are ageing with an intellectual disability, their caregivers, Irish society, and the wider world. At Trinity College Dublin, the goal is to generate high-quality scientific evidence to enhance, through various known and still unknown channels, the experience of ageing for all. TCAID believes that to achieve this goal, a fully collaborative and interdisciplinary approach is essential. This is demonstrated by the interdisciplinary nature of the Centre, with thematic leads from the School of Nursing and Midwifery, Pharmacy and Pharmaceutical Science, and Dental Science. Speech and Language, Dietetics are now collaborating and positioned to lead specific subthemes. The full version of the strategy and an easy-to-read version are available for download on the TCAID website, along with additional information. Click here to access
2027 IASSIDD World Congress
After a competitive bidding process led by Professor. Mary McCarron, Dublin, Ireland, emerged as the chosen host for the 2027 IASSIDD World Congress.
This is a tremendous honour and is a testament to the work carried out by the Trinity Centre for Ageing and Intellectual Disability (TCAID), with special recognition for the accomplishments of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA). It also reflects the remarkable international standing achieved by both IDS-TILDA and TCAID.
The International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD) is the first and only worldwide group dedicated to the scientific study of intellectual disability.
The expected turnout for the event is estimated to range from 1200 to 1500 participants, representing member countries worldwide.
IASSIDD 2027 will allow attendees to build collaborative relationships, advance research by providing a platform for experts to exchange ideas and foster interdisciplinary connections.
IDS-TILDA presentation to the Disability Division in the Department of Children, Equality, Disability, Integration and Youth
Mr. Colm O Conaill, Assistant Secretary to the Disability Division of the Department of Children, Equality, Disability, Integration, and Youth (DCEDIY), extended an invitation to Professor Mary McCarron and the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) research team to present their latest findings to the department.
The presentation covered various key areas, including Intergenerational Changes for 40-49 year-olds, Social Determinants of Health such as Interpersonal Relationships, Community Participation and Choice, Loneliness, Multimorbidity and Physical Health Trajectories in People with Intellectual Disability, Outcomes for Older Women with Intellectual Disabilities, Individuals with Severe to Profound Levels of Intellectual Disability, Psychological Well-being and Cognitive Health, Oral Health, and Family Carers.
DCEDIY acknowledged the potential for collaboration with their Disability teams and contact details have been shared for further engagement with Thematic Leads.
Building Circles of Support for People with Intellectual Disabilities
The HRB-funded Knowledge Translation project, 'Building Circles of Support for People with Intellectual Disabilities', aimed to showcase positive examples of support for individuals from their Circles of Support and the strategies used to build and maintain those relationships. The project was led by a team from TCAID, which included Dr. Darren McCausland, Senior Research Fellow, and Ms. Iara Faria Synnott, Research Assistant. The team collaborated closely with Stewarts Care to develop the project resources and received support from partners, including the HSE, the Federation of Voluntary Service Providers, and Temple University in the United States.
The 'Building Circles of Support for People with Intellectual Disabilities' webinar took place on Thursday, December 7th, 2023, to introduce the project's accessible multimedia resources. These resources include a downloadable booklet and videos featuring the lived experiences of six individuals with intellectual disabilities. The aim is for others to learn from the wonderful examples of supportive relationships demonstrated by the participants in these videos. Click here to access
Left to right: Mr. Martin Magee (participant) and his sister Martina.
The Improved Supports for Underserved Communities Award 2023 - Timely access to Early Diagnosis Award
A TCAID team member, Dr. Martin McMahon, was recently awarded The Improved Supports for Underserved Communities Award 2023 - Timely Access to Early Diagnoses Award, a €100,000 grant from the Irish Cancer Society. The main goal of this study is to investigate the factors affecting timely access to cancer diagnostics for individuals with intellectual and physical disabilities, as well as those over 65 years. Using longitudinal data from IDS-TILDA and TILDA, Dr. McMahon and the research team will undertake interviews with regional cancer organisations and engage with these underserved groups to uncover barriers and facilitators to prompt cancer detection.
These are very competitive grants and huge congratulations to Dr. McMahon for his leadership in moving forward one of the major priorities outlined in TCAIDs Research Strategy 2023 - 2028 namely Create care pathways for poorly understood diseases where we specifically committed to developing new understandings of the epidemiology of cancer including what is different for people with an intellectual disability as compared to the general population.
Congratulations to other members of the project team - Professor. Philip McCallion, Dr. Mark Ward, Dr. Eilish Burke, Professor. Maeve Lowery, Dr. Alyson Mahar, Dr. Andrew Wormald, Ms. Audrey O Halloran, Professor. Roman Romero-Ortuno and Dr. Caitriona Ryan.
Let's chat about medicines!
A co-designed, co-produced, and co-implemented event involving individuals with intellectual disabilities discussing psychotropic medicines occurred at Trinity College Dublin on Tuesday, 3rd October 2023.
With over 40 attendees, participants gained insights into psychotropic medicines and received updates from the EQUIP [Examining Quality, Use, and Impact of Psychotropic (use) in Older Adults with Intellectual Disability] project through interactive activities and group discussions. The event achieved significant success, showcasing successful Patient and Public Involvement (PPI) partnerships and active engagement from all attendees. For many participants, this marked their initial exposure to information about medicines, and they thoroughly enjoyed the experience. One attendee commented "It was interesting. It was good to meet up with other people to talk."
Left to right: Ms. Mei Lin Yap (Ambassador Liaison Officer), Ms. Lorraine Keating (PPI Panel Member) and Dr. Ashleigh Gorman (Research Fellow)
Menopause Café; increasing awareness, a conversation about women’s health at menopause.
The event was organised by Dr. Katie O’Connor and Ms. Fiona Brown of the Faculty of Health Sciences and chaired by Dr. Eilish Burke of the School of Nursing and Midwifery and the Trinity Centre for Ageing and Intellectual Disability, Trinity College Dublin (TCD). The event included champions of women’s health Dr. Mary Ryan, Physician, Endocrinologist Lecturer and Author, Ms. Eimear Galvin, Strategic Director and Manager of the Health Innovation Hub Ireland (HIHI), Prof. Fiona Wilson in School of Physiotherapy, Ms. Oonagh O’Hagan, Pharmacist, Owner and Managing Director of Meaghers Pharmacy Group, and our TCAID colleague Ms. Stephanie Corrigan who is currently undertaking a Masters by Research on Menopause, Mental Health and Women with Intellectual Disability.
Each of these champions embraced and emphasised the aims of changing the approach to menopause care, aspiring to increase public awareness and support, and examining creatively a way to make access better to information on women’s health at different stages of life. Most importantly each of these champions were true advocates who wanted to lift the voices of women so that they are active participants in their own health decisions.
Frailty Roundtable
As part of an ongoing international collaboration between the TCAID and researchers from the Healthy Ageing and Intellectual Disability (HA-ID) study at Erasmus MC,Netherlands, TCAID was privileged to be the host of a Frailty Roundtable on the 2nd and 3rd August, to discuss and move forward in the development of a combined frailty index. This collaboration builds on the work of PHD student Mr. Marco van Maurik at Erasmus University Medical Centre Rotterdam who has developed a frailty index from the HA-ID study, and MD Student Dr. Aoife McFeely who is in the process of developing a frailty index using data from IDS-TILDA. The aim of this collaboration is to compare, validate, and in turn eventually adapt each index into one standardised, combined frailty index specific to ID communities.
This roundtable presented the opportunity for discussion on the area of frailty and its application to better health provision for intellectual disability (ID) communities, and the steps moving forward of how a combined frailty index can benefit this.
Attendees: Prof. Mary McCarron, Director of the Trinity Centre for Ageing and Intellectual Disability; Prof. Philip McCallion, Senior Advisor, Temple University; Prof. Sean Kennelly, Consultant Physician in Geriatric and Stroke Medicine in Tallaght University Hospital; Prof. Roman Romero-Ortuno, Professor in Medical Gerontology, School of Medicine and Consultant Physician in St. James's Hospital, Dublin; Dr Aoife McFeely, MD Student & Specialist Registrar in Geriatric Medicine, Tallaght University Hospital; Marco van Maurik, PhD Student, Department of General Practice, Intellectual Disability Medicine, Erasmus MC, University Medical Center Rotterdam; Dr Eilish Burke, Associate Director of the Trinity Centre for Ageing and Intellectual Disability; Dr Alyt Oppewal, Assistant Professor, Department of General Practice, Intellectual Disability Medicine, Erasmus MC, University Medical Center Rotterdam; Dr. Mylene Bohmer, PhD and Postdoctoral Researcher, Department of General Practice, Intellectual Disability Medicine, Erasmus MC, University Medical Center Rotterdam; and Dr Eimear Connelly, Specialist Registrar in Geriatric Medicine, Tallaght University Hospital; Dr Darren Fitzpatrick, ID Nursing Student & Kieva Leslie, Research Assistant.
Bone Health and Frailty - World Osteoporosis Day 2023
Older adults with intellectual disability are at great risk of developing osteoporosis due to high levels of polypharmacy, high levels of sedentary behaviour and imbalanced diets. These are factors that can be changed.
71% of men with ID over the age of 40 years presented with either osteoporosis or osteopenia with 58% taking at least one medicine that contributed to poor bone health. On World Osteoporosis Day we need to be conscious of risk for those with ID across their lifespan.
To mark World Osteoporosis Day, Stewarts Care hosted Dr. Eilish Burke, Associate Professor, Dr. Aoife McFeely, Specialist Registrar in Geriatric Medicine, Tallaght University Hospital and Anne Power, ANP in Chronic Health Conditions in People with Intellectual Disability (adult) to disseminate the latest evidence and screening patterns of bone health, falls prevention and frailty in Intellectual disability. The conversation considered the importance of bone health for intellectual disability populations and considered what this means in terms of providing support.
Left to right: Ms. Louise O'Reilly (Clinical Nurse Specialist - Health Promotion, Stewarts Care), Dr. Aoife McFeely (Specialist Registrar in Geriatric Medicine, Tallaght University Hospital and MD Student IDS-TILDA), Dr. Eilish Burke (Associate Professor, School of Nursing and Midwifery, Trinity College Dublin), Ms. Anne Power (ANP: Chronic Health Conditions in Intellectual Disability - Adult, Millbrook Day Centre,Wexford Residential Intellectual Disability Service) and Ms. Maria Kavanagh (Director of Nursing, Stewarts Care).
The Care of Older Adults with Intellectual Disabilities and Complex Age-Related Conditions
TCAID and the National Disability Authority (NDA) formally launched the The Care of Older Adults with Intellectual Disabilities and Complex Age-Related Conditions report on Thursday, 19th of January 2023.
The NDA commissioned TCAID to carry out research to examine the care and service options for older adults with intellectual disabilities and complex age-related conditions across a number of service settings. This report highlights serious limitations in terms of policy, funding and absence of clear national policy to guide ID service delivery. People with intellectual disabilities are living longer, with increasing numbers advancing into older age. This is directly related to improvements in health care and supports, but it also carries with it challenges in terms of delivering appropriate care and service for older individuals with intellectual disabilities and who develop complex care needs as they age.
The launch included a presentation of the findings and recommendations, followed by an engaging panel discussion and a question and answer session.
The full report is available to read on the TCAID website. Click here to access
Left to right: Dr. Rosalyn Tamming (Head of Policy, Research & Public Affairs, NDA), Dr. Fintan Sheerin (Associate Professor in Intellectual Disability Nursing, TCD School of Nursing & Midwifery), Ms. Helena Connors (Policy and Research Officer, National Federation of Voluntary Bodies), Dr. Sandra Fleming (Assistant Professor, TCD School of Nursing & Midwifery), Ms. Marie Ann Byrne (Family Member), Prof. Mary McCarron (Professor of Ageing and Intellectual Disability, TCD School of Nursing & Midwifery), Prof. Philip McCallion (Professor/Director at the School of Social Welfare, Temple School of Social Work, Temple University, Philadelphia) and Dr. Maureen D’Eath (Research Fellow, TCD School of Nursing & Midwifery)
IDS-TILDA 2023 Graduates
We are delighted that two IDS-TILDA team members sucessfully passed their recent vivas and have each been awarded a PhD. They are -
Dr Louise Lynch - Uncovering sedentary behaviour: A comprehensive exploration of patterns and health effects among older adults with an intellectual disability.
Dr Judy Ryan - Overweight and obesity in older adults with an intellectual disability.
We would also like to congratulate Dr Karen Ryan who has been awarded an MD for her thesis - A repeated cross-sectional, mixed methods study of the palliative care needs of people with intellectual disability in Ireland and of staff responses to those needs.
'Such a relief to have sucessfully defended my thesis. What a wonderful rewarding experience which will hopefully make an impact.' - Dr Louise Lynch.
Left to right: Prof. Mary McCarron (Co-Supervisor), Dr. Eilish Burke (Supervisor), Dr. Louise Lynch (PhD Student), Prof. Craig Melville (External Examiner) and Dr. Frances O'Brien (Internal Examiner)