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Health and Wellbeing of Older Adults with Intellectual Disability


Ageing and Intellectual Disability Subtheme

People with an Intellectual Disability (ID) now live well into old age. This is an incredible success story however one that also poses challenges as this is the first time a larger older population of people with ID exists
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List of active members of this theme

Prof Mary McCarron, Prof Philip McCallion, Prof June Nunn, Dr Martin Henman, Prof Geralyn Hynes, Dr Damien Brennan, Dr Elizabeth Fahey-McCarthy, Dr Karen Ryan MD, Prof Kevin Connaire, Dr Rachel Carroll, Dr Mary-Ann O'Donovan, Dr Maire Dwyer, Dr Niamh Mulryan MD, Dr Caoimhin MacGiolla Phadraig, Eilish Burke, Darren McCausland, Eimear McGlinchey, Andrew Wormald, Sinead Foran, Juliette O'Connor, Clare O'Dwyer, Eilish King, Judy Ryan, Evelyn Reilly and Pamela Dunne.

Name of Visiting Professor: Prof Philip McCallion

International Collaborations

Dementia Care in Intellectual Disabilities and Dementia Prof Mary McCarron (Irish PI), Brandeis University, Taiwan (Prof Lisa Wang), Cambridge University, UK (Prof Anthony Holland), Albany University, Center of Excellence in Ageing and Community Wellness (Prof Philip McCallion), University of South Wales, UK (Dr Stuart Todd), Ulster University (Dr Laurence Taggart), Health Issues in Ageing and Intellectual Disabilities Prof Mary McCarron (Irish PI), Erasmus University, Netherlands, Albany University, Center of Excellence in Ageing and Community Wellness (Prof Philip McCallion) ,University in St Louis, St Louis College of Pharmacy, USA (Prof Henman, Irish PI)

Current projects

  • An Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS TILDA) PI: Prof Mary McCarron
  • A Longitudinal Study on Dementia in persons with Down syndrome. PI: Prof Mary McCarron
  • Brain Exercises for Adults with Down Syndrome. Accessing the Feasibility of Cognitive Training to Influence Executive Functions in Adults with Down Syndrome. The BEADS study. Principle Researcher: Eimear McGlinchey
  • Identifying and addressing the needs of people with ID (Part of AIIHPC Structured Research Network Strand 1: Pathways toward social justice: Understanding equality and inclusion in palliative care). Co-PIs: Prof Mary McCarron /Dr Karen Ryan
  • Exploring end of life for older adults with intellectual disabilities in Ireland: care received through the social justice lens: Principle Researcher: Janet O'Farrell
  • The last months of life of people with Learning Disability living in Wales over a 12 month period. PI: Stuart Todd/Co-PI: Prof Mary McCarron
  • Day care in Northern Ireland and persons with ID as they age. PI: Dr Laurence Taggart/Co-PI: Prof Mary McCarron
  • Drug Buren Index to define the Functional Burden of Medicines in Older Adults with Intellectual Disabilities and Older Adults with Multi-morbidity, Dean's Research Fund. Principal Investigator: Dr Maire O'Dwyer
  • Way finding - development and validation of an assistive navigation tool for individuals with mild cognitive impairment, early on-set dementia or intellectual disability. Principal Investigator: Dr John Dinsmore

Current research students

Doctor of Philosophy

  • Foran, S. The prevalence and predictors of falls and fear of falling among participants in the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) Wave 1. School of Nursing and Midwifery, University of Dublin, Trinity College Dublin, Ireland. Principal Supervisor: Prof Mary McCarron
  • O'Farrell, J. Palliative care in intellectual disability in older adults across Ireland; identifying and assessing need. School of Nursing and Midwifery, University of Dublin, Trinity College Dublin, Ireland. Principal Supervisor: Prof Mary McCarron
  • McGlinchey, E. Assessing the feasibility of cognitive training in influencing executive functions in adults with Down Syndrome. School of Nursing and Midwifery, University of Dublin, Trinity College Dublin, Ireland. Principal Supervisor: Prof Mary McCarron
  • Wormald, A. An examination of loneliness as experienced by older people with an intellectual disability. School of Nursing and Midwifery, University of Dublin, Trinity College Dublin, Ireland. Principal Supervisor: Prof Mary McCarron
  • MacGiolla Phadraig, C. The Oral Health Status of Older Adults with an Intellectual Disability in Ireland. School of Dentistry, University of Dublin, Trinity College Dublin, Ireland. Principal Supervisor: Prof June Nunn/Co-Supervisor: Prof Mary McCarron
  • Khalaf Almutairi, H. The prevalence, effectiveness and side effects of gastro-intestinal medications among adults with intellectual disability. School of Pharmacy and Pharmaceutical Sciences, University of Dublin, Trinity College Dublin, Ireland. Principal Supervisor: Dr Martin Henman/Co-Supervisor: Prof Mary McCarron
  • O'Connell, J. Addressing the complexity of medication use in people with Intellectual Disability. School of Pharmacy and Pharmaceutical Sciences, University of Dublin, Trinity College Dublin, Ireland. Principal Supervisor: Dr Martin Henman/Co-Supervisor: Prof Mary McCarron

Masters by Research

  • O'Dwyer, C. Prevalence and Associated Factors of Behaviour which challenges in Older Adults with an Intellectual Disability in Ireland. Principal Supervisor: Prof Mary McCarron/Co-Supervisors: Prof Philip McCallion and Prof Ian Gray.
  • King, E. An occupational perspective on ageing and intellectual disability. Principal Supervisor: Prof Mary McCarron/Co-Supervisors: Mary Ann O'Donovan and Joan Brangan (Assistant Professor in Discipline of Occupational Therapy)

Open opportunities for MSc/PhD projects

There are opportunities for PhD projects within this longitudinal cohort study in the following topics:

1. IDS TILDA - The Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (see http://www.idstilda.tcd.ie) Prof Mary McCarron

  • Understanding risk for prevalence and incidence of Type II Diabetes among adults with intellectual disability.
  • Understanding the impact of engagement in good nutrition, physical activity and health screenings in the health status of people with intellectual disability.
  • Understanding prevalence, incidence and patterns of epilepsy among adults with intellectual disability and its implications for health and social care.
  • Establishing key determinants in good health in persons with intellectual disability over 60.
  • Understanding similarities and dissimilarities in cardiovascular disease progression for people with intellectual disability compared to the general population.
  • Changing patterns for social engagement for people with intellectual disability compared to the general population when disease patterns are similar.
  • Understanding cognitive frailty in people with intellectual disability.
  • Differential patterns in Health Services offered to people with intellectual disability compared to the general population when disease patterns are similar.
  • Hypertension risk factors and prevalence in Down Syndrome specific adults versus the general population.
  • Obesity and associated factors in adults with intellectual disability.
  • Obesity and obesity-related secondary conditions in older adults with intellectual/developmental disabilities.
  • (Instrumental) activities of daily living in older adults with intellectual disabilities.
  • The prevalence of constipation in institutionalised people with intellectual disability.
  • Examining mental health issues in older adults with intellectual disability.
  • Sense of belonging and community living for people with intellectual disability.
  • Cardiac risk profiles for ageing persons with intellectual disability: a comparison with the general population.
  • Understanding physical activity patterns for persons ageing with intellectual disability.
  • Understanding gastro-intestinal disease in ageing people with intellectual disability.
  • Meaningful day activities and fulfilling life roles for people with intellectual disability.
  • Exploring the changing nature of care giving for people with intellectual disability.
  • Exploring usefulness of quality of life measures for people with intellectual disability.
  • Tracking availability and quality of end of life carer for people with intellectual disability over time.
  • Exploring the association between sedentary behaviour and cardiac risk in the ageing population.

For further information on any of the projects, please refer to http://nursing-midwifery.tcd.ie./research/opportunities/IDS%20Tilda%20projects.php

2. Dementia and Down Syndrome Prof Mary McCarron

There are opportunities for PhD projects within this longitudinal cohort study in the following topics:

  • Prevalence of behavioural and psychological symptoms of dementia in individuals with intellectual disabilities.
  • Differentiating ageing among adults with Down Syndrome and people with intellectual disability from other aetiologies.
  • Understanding the onset of co-morbidities and frailty across the presentation of symptoms of dementia.
  • Comparing the lived experience of people with Down Syndrome and dementia across residential, community and family settings.

Completed projects

  • An Investigation of dependency levels of ageing persons with intellectual disability. PI: Prof Mary McCarron
  • Getting the message to the People that Matter; Innovation in Research Dissemination. PI: Prof Mary McCarron
  • A collaborative initiative to implement person-centred practice in residential care settings for children and adults with an intellectual disability. PI: Prof Mary McCarron
  • A palliative care model for supporting persons with intellectual disabilities (ID) and advanced dementia (AD). PI: Prof Mary McCarron
  • Cost effectiveness and Quality of Life in Service Delivery for Persons with the dual disability of Down syndrome (DS) Alzheimer’s Dementia (AD). PI: Prof Mary McCarron
  • Clinical Nursing Research Fellow, investigating the ‘Influence of Alzheimer’s Dementia on time spent care giving for persons with Down Syndrome and Alzheimer's dementia. McCarron, M (PI and Doctoral Student). PI: Prof Mary McCarron
  • Seed funding to explore the impact of caring for persons with the dual disability of Alzheimer’s Dementia and Down Syndrome. PI: Prof Mary McCarron
  • Supporting persons with intellectual disabilities & advanced Dementia: Fusing the Horizons of Intellectual Disability, Palliative & Person-Centred Dementia Care. PI: Prof Mary McCarron
  • Understanding family strategies that enable long term and sustainable home environments for older people with an Intellectual Disability. National Disability Authority Project. PI: Dr Damien Brennan
  • Understanding the contributors to better integration and community participation by persons with severe and profound intellectual disability. Irish Research Council Project. Co-PIs: Prof Mary McCarron/Prof Philip McCallion

Completed research students

PhD Thesis Complete

  • McCarthy Fahey, E. (2013) Understanding the Experience of Loss, Grief and Bereavement for Staff supporting persons with Intellectual Disability and Dementia: A Hermeneutic Inquiry. Principal Supervisor: Prof Mary McCarron
  • Swinburne, J. (2014) Feasibility of Anthropometric Measurements for Large-Scale Application in the Irish Longitudinal Study on Ageing in People with Intellectual Disability (IDS-TILDA): An Exploratory Study. School of Nursing and Midwifery, University of Dublin, Trinity College Dublin, Ireland. Principal Supervisor: Prof Mary McCarron
  • O'Dwyer, M. (2015) Prevalence, Patterns and Factors Associated with Multiple Medicines Use in an Ageing Population with Intellectual Disability in Ireland. School of Pharmacy and Pharmaceutical Sciences, University of Dublin, Trinity College Dublin, Ireland. Principle Supervisor: Prof Martin Henman/Co-Supervisor: Prof Mary McCarron
  • O'Donovan, MA. (2015) Exploring choice, home and health service utilisation for people ageing with an intellectual disability during a time of housing relocation and transition. Royal College of Surgeons, Dublin, Ireland. Principle Supervisor: Dr Elaine Byrne/Co-Supervisor: Prof Mary McCarron
  • Mulryan, N. (2016) Sleep and associated factors in an older Irish population with intellectual disability. School of Medicine, Faculty of Health Sciences, University of Dublin, Trinity College Dublin, Ireland. Principle Supervisor: Prof Brian Lawlor/Co-Supervisor: Prof Mary McCarron
  • McCausland, D. (2016) Social participation for older people with an intellectual disability in Ireland. School of Nursing and Midwifery, University of Dublin, Trinity College Dublin, Ireland. Principal Supervisor: Dr Damien Brennan/Co-Supervisor: Prof Mary McCarron
  • Burke, E. (2016) An Exploration of the bone health of older adults with an intellectual disability. School of Nursing and Midwifery, University of Dublin, Trinity College Dublin, Ireland. Principal Supervisor: Prof Mary McCarron

MSc Thesis Complete

  • Andrews, V. (2010) Facilitating without leading: A preliminary study to develop facilitation skills to co-undertake participatory action research with people with Down Syndrome. School of Nursing and Midwifery, University of Dublin, Trinity College Dublin, Ireland. Principal Supervisor: Prof Mary McCarron
  • McDermott, A. (2015) A descriptive quantitative study examining the prevalence of constipation in older adults with intellectual disabilities in Ireland. School of Nursing and Midwifery, University of Dublin, Trinity College Dublin, Ireland. Principal Supervisor: Eilish Burke/Co Supervisor: Prof Mary McCarron
  • Griffiths, M. (2016) An Exploratory Study of the Changing Experiences of Family Carers of older people with an Intellectual Disability and an investigation into their Support Services requirements in the context of continued care giving. School of Nursing and Midwifery, University of Dublin, Trinity College Dublin, Ireland. Principal Supervisor: Prof Mary McCarron