Dr. Eimear Mc Glinchey
Assistant Professor, School of Nursing & Midwifery
Biography
r Eimear McGlinchey is an Assistant Professor in Intellectual Disability in the School of Nursing and Midwifery, and a Senior Atlantic Fellow for Equity in Brain Health at the Global Brain Health Institute.
Eimear's background is in Psychology and her primary area of interest is in the promotion and maintenance of brain health in people with an intellectual disability, with particular focus on the area of dementia in people with Down syndrome. Eimear's work in the area of dementia and Down syndrome includes investigating early biomarkers of Alzheimer's disease using neuroimaging, blood- based and cognitive biomarkers and is PI of the PREVENT dementia - DS project. This project is part of a collaborative international study with the Horizon 21 European Down syndrome Consortium. Dr McGlinchey is co-PI on a project that includes the voices of people with an intellectual disability in developing guidelines for post-diagnostic dementia support.
Eimear's work is based in the Trinity Centre for Ageing and Intellectual Disability and is research lead with the National Intellectual Disability Memory Service. Her other areas of interest include equity and inclusion as well as accessibility and innovative dissemination.
Eimear teaches on the undergraduate and postgraduate programmes in the school and provides supervision to undergraduate, masters and PhD students. She is Program Director for the Ageing Health and Wellbeing in Intellectual Disability MSc, the Dementia MSc, and the Community Health MSc in the School of Nursing and Midwifery. She has a number of publications and has disseminated widely through national and international conferences.
Publications and Further Research Outputs
Peer-Reviewed Publications
McGlinchey, E., Kleinhans, A., Vava, B., Fortea, J., Advancing Equity for People with Down Syndrome in South Africa: An Atlantic Institute Initiative, Trsomy 21 Research Society International Conference, Rome, 5-8 June, 2024
Fallon, M.,McCallion, P., McCarron, M. & McGlinchey, E., An Exploration of Biopsychosocial Risk Factors for People Ageing with Down syndrome in Ireland, 5th International Conference of the Trisomy 21 Research Society, Rome, 5th - 8th June, 2024
Kibsgaard Larsen, F., Asaad Baksh, R.,McGlinchey, E., Melbye Langballe, E., Benejam, B., Beresford-Webb, J., McCarron, M., Coppus, A., Falquero, S., Fortea, J., Levin, J., V.Loosli, V., Mark, R., Rebillat, A-S., Zaman, S. & Strydom, A., Age of Alzheimer's disease diagnosis in people with Down syndrome and associated factors: Results from the Horizon 21 European Down syndrome consortium, The Journal of the Alzheimer's Association, 2024
Attachment, Cognitive Dissonance and Reciprocation in Intellectual Disability Care Provision in, Intellectual Disabilities: Health and Social Care Across the Lifespan , 2023, [Jan De Vries & Eimear McGlinchey ]
McGlinchey, E., Daly, L., Allen, A., Dennehy, H., Buttery, N., Corr, C., McCallion, P., Kennelly, S., Dunne, P., McCarron, M., Developing Best Practice Guidelines for Post-Diagnostic Dementia Support for People with an Intellectual Disability, 33rd Alzheimer Europe Conference, Helsinki, 16-18 October 2023, 2023
Wormald A, McGlinchey E, D'Eath M, Leroi I, Lawlor B, McCallion P, McCarron M, O'Sullivan R. & Chen Y., Impact of COVID-19 Pandemic on Caregivers of People with an Intellectual Disability, in Comparison to Carers of Those with Other Disabilities and with Mental Health Issues: A Multicountry Study., International Journal of Environmental Research and Public Health. , 20, (4), 2023
McGlinchey, E., Iulita, M. F., & Fortea, J., Compounded inequality: racial disparity and Down syndrome., The Lancet Public Health, 8, (11), 2023, p836 - 836
Allen, A-P., McGlinchey, E., Fallon, M., McCallion, P. & McCarron, M., Cognitive reserve and dementia risk management in people with an intellectual disability., International Journal of Geriatric Psychiatry, 2023
Kirwan, R., Sheerin, F., McGlinchey, E., McCallion, P. & McCarron, M., Functional loss in older adults with intellectual disabilities and dementia, Learning Disability Practice, 2022
McCarron, M., McCausland, D., McGlinchey, E., Bowman, S., Foley, M., Haigh, M., Burke, E. & McCallion, P., Recruitment and retention in longitudinal studies of people with intellectual disability: A case study of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA), Research in Developmental Disabilities, 124, 2022
Dennehy H., Allen A.P., McGlinchey E., Buttery N., Garcia-Dominguez L., Chansler R., Corr C., Dunne P., Kennelly S., Daly L. McCallion P. and McCarron M., A scoping review of post-diagnostic dementia supports for people with intellectual disability, Aging and Mental Health, 2022
Boyle, R., Connaughton, M., McGlinchey, E., Knight, S.P., De Looze, C., Carey, D., Stern, Y., Robertson, I.H., Kenny, R.A. and Whelan, R, Connectome-based predictive modeling of cognitive reserve using task-based functional connectivity, bioRxiv, 2022
Chen, Y.S., Almirall"Sanchez, A., Ilinca, S., Grycuk, E., Higgins, D., Leon, T., McGlinchey, E., Rogan, C., Saha, S., Tjin, A. and Galvin, M.,, COVID"19"related loneliness, social isolation and burden in informal caregivers worldwide. , Alzheimer's & Dementia, , 18, (S8), 2022
McCarron, M., Allen, A., McCausland, D., Haigh, M., Luus, R., Bavussantakath, F.R., Sheerin, F., Mulryan, N., Burke, E., McGlinchey, E., Flannery, F. & McCallion, P., The impact of COVID-19 on people ageing with an intellectual disability in Ireland: Protocol for a follow-up survey., HRB Open Research, 4, (95), 2021
Marianne Fallon, Eimear McGlinchey, Philip McCallion, Mary McCarron, Developing A Biopsychosocial Model of Cognitive Decline in People Ageing with Intellectual Disability, IASSIDD Virtual 2021, Amsterdam, the Netherlands, 6-8th July 2021, 2021
Boyle, R., Connaughton, M., McGlinchey, E., Knight, S.P., De Looze, C., Carey, D., Stern, Y., Robertson, I.H., Kenny, R.A. and Whelan, R, Connectome‐based predictive modeling of cognitive reserve, Alzheimer's & Dementia, 7, (S5), 2021
McCarron, M., McCausland, D., Luus, R., Allen, A., Sheerin, F., Burke, E., McGlinchey, E., Flannery, F. & McCallion, P., The impact of coronavirus disease 2019 (COVID-19) on older adults with an intellectual disability during the first wave of the pandemic in Ireland, HRB Open Research, 4, (93), 2021
Marianne Fallon, Eimear McGlinchey, Philip McCallion, Mary McCarron, Using Health Psychology Theory to inform research into Cognitive Decline in People with Intellectual Disability, Psychology, Health and Medicine , University College Cork, 12th-14th May 2021, 2021
Chen, Yaohua Sophie and Beber, Bárbara Costa and Higgins, Dawn and Galvin, Miriam and Ilinca, Stefania and Lawlor, Brian and Leon, Tomas and Leroi, Iracema and McGlinchey, Eimear and Rogan, Carol and Saha, Sanjib and Tjin, Anna and O'Sullivan, Roger and CLICâ Caregivers Study Group, COVIDâ 19â related loneliness and social isolation in caregivers of people with brain health challenges: The CLICâ Caregiver Global Survey, Alzheimer's & dementia : the journal of the Alzheimer's Association, 17, (Suppl 7), 2021
Marianne Fallon, Eimear McGlinchey, Philip McCallion, Mary McCarron, Developing A Biopsychosocial Model of Cognitive Decline in People Ageing with Intellectual Disability, IASSIDD Virtual 2021, Amsterdam, the Netherlands, 6-8th July 2021, 2021
McGlinchey, E., McCallion, P., & McCarron, M., Patterns of onset of dementia and epilepsy in adults with Down syndrome: Findings from IDS-TILDA., Trinity Health and Education International Research Conference 2021 (THEconf2021): 'Transforming healthcare in a changing world: new ways of thinking and working', Dublin, 9th - 11th March, 2021
McGlinchey, E., McCallion, P., McCarron, M., Down syndrome and Dementia: Advances in the field, Current Opinion in Psychiatry, 33, (3), 2020, p278 - 283
Young,P., Estarella, M., Coomans, E., Srikrishna, M., Beaumont,H., Maass, A., Venkataraman, A., Lissaman,R., Jiménez, D., Betts, M.J., McGlinchey, E., Berron, D., O'Connor,A., Fox, N., Pereira, J., Jagust, W., Carter, S., Paterson, R., Schöll, M., Imaging Biomarkers in Neurodegeneration: Current and Future Practices, Alzheimer's Research and Therapy , 12, (49), 2020
Ageing with Intellectual Disability: Dementia and Cognitive Decline in, editor(s)J. Matson , Handbook of Dual Disorders, Springer Link, 2020, pp311 - 330, [Sheerin F, McCallion P, McGlinchey E, O'Dwyer M, Reilly E, McCarron, M ]
Roe, L., Galvin, M., Booi, L., Brandao, L., Salas, J. L., McGlinchey, E., & Walrath, D., o live and age as who we really are: Perspectives from older LGBT+ people in Ireland., HRB Open Research, 3, (6), 2020
McGlinchey, E., McCallion, P., McCarron, M., Developing National Positive Ageing Indicators for People with an Intellectual Disability in Ireland, JOURNAL OF INTELLECTUAL DISABILITY RESEARCH, IASSIDD World Congress, Glasgow, August 2019, 63, (7), Wiley, 2019
McGlinchey, Eimear; McCarron, M., Holland, AJ., McCallion, P , Examining the effects of computerised cognitive training on levels of executive function in adults with Down syndrome, Journal of Intellectual Disability Research, 63, 2019, p1137 - 1150
Dementia and Intellectual Disability: Prevalence, Assessment and Post-Diagnostic Support in, editor(s)Johnny Matson , Handbook of Intellectual Disabilities, Springer , 2019, pp965 - 986, [Eimear McGlinchey, Evelyn Reilly, Philip McCallion, Pamela Dunne, Niamh Mulryan, Mary McCarron]
McGlinchey, E., McCallion, P. & McCarron, M., Inclusion of people with Down syndrome in dementia research: Awareness, engagement and attitudes., Journal of Intellectual Disability Research, The World Congress of the International Association for the Scientific Study of Intellectual and Developmental Disabilities, Glasgow, Scotland, 6th - 9th August, 63, (7), 2019
McGlinchey, E., McCallion, P., McCarron, M., Developing National Positive Ageing Indicators for People with an Intellectual Disability in Ireland, JOURNAL OF INTELLECTUAL DISABILITY RESEARCH, IASSIDD World Congress, Glasgow, August 2019, 63, (7), Wiley, 2019
McGlinchey, E., McCallion, P,, McDermott, S., Foley, M., Burke, E.A., O'Donovan, M-A., McCausland, D., Gibney, S., McCarron, M. , Positive Ageing Indicators for People with an Intellectual Dsiability 2018, Dublin: Trinity Centre for Ageing and Intellectual Disability, 2019
Mac Giolla, Phadraig C., McCallion, P., McGlinchey, E., Nunn, J., McCarron, M, Communication-based behavior support for adults with intellectual disabilities receiving dental care: A focus group study exploring dentists' decision-making and communication., Journal of Intellectual Disability Research, 23, (4), 2019, p526 - 540
McGLinchey, E., Whelan, R., McCarron, M. , Dementia in People with Down syndrome: An Underrepresented Population, Engage Dementia , Croke Park, Dublin , May, 2019, 2019
Ouellette-Kuntz, H., Martin, L., Burke, E., McCallion, P., McCarron, M., McGlinchey, E., Sandberg, M., Schoufour, J., Shooshtari, S., Temple, B, How best to support individuals with IDD as they become frail: Development of a Consensus Statement, Journal of Applied Research in Intellectual Disabilities , 32, (1), 2018, p35 - 42
McGlinchey, E., McCallion, P., McCarron, M., Patterns of dementia and epilepsy in adults with Down syndrome in Ireland: data from IDS-TILDA, JOURNAL OF INTELLECTUAL DISABILITY RESEARCH, IASSIDD European Congress, Athens, May 2018, 31, (4), Wiley, 2018, pp552 - 552
Overview of the Important Physical Health Concerns in, editor(s)Vee P. Prasher and Matthew P. Janicki , Physical Health of Adults with Intellectual Disabilities, Springer Nature, 2018, [Burke, E.A., O'Dwyer, M., McGlinchey, E., Foran, S., MacGiolla Phadraig, C., Carroll, R., McCallion, P. and McCarron, M]
McGlinchey, E., McCarron, M, Cognitive Training with Adults with Down syndrome, 2017 International Summit on Ageing with an Intellectual Disability, TBSI Dublin, 20th September, 2017
The Test for Severe Impairment in, Neuropsychological Assessments of Dementia in People with Down syndrome and Intellectual Disabilities, 2017, [McCarron, M., Carroll, R., Mulryan, N., Reilly, E., Dunne, P., McGlinchey, E., McCallion, P., ]
McGlinchey, E., McCarron, M., McCallion, P, The impact of Cognitive Training on Executive Function in Adults with Down syndrome, 2016 IASSIDD World Congress, Melbourne, 15-19 August 2016, 2016
McGlinchey, E., McCarron, M., McCallion, P, Examining the relationship between cognitive reserve and levels of executive function: Results from the BEADS study, 2016 IASSIDD World Congress, 15-19 August 2016, 2016
McGlinchey, E., McCarron, M., McCallion, P, Conducting a feasibility study on cognitive training with adults with Down syndrome: Methodology and lessons learned, 2016 IASSIDD World Congress, Melbourne, 15-19 August 2016, 2016
McGlinchey, E., McCarron, M., McCallion, P, Findings in relation to change in EF scores, IASSID Congress, Melbourne, Australia, 15th - 19th August, 2016
McGlinchey, E., McCarron, M., McCallion, P, Conducting a feasibility study on cognitive training with adults with Down syndrome: Methodology and lessons learned, 2016 IASSIDD World Congress, Melbourne, 1519 August 2016, 2016
McGlinchey, E., McCallion, P., McCarron, M, Cognitive reserve: Implications for research in dementia for people with down syndrome, Faculty of Health Sciences Research Day, Trinity College, Dublin, 16th September, 2015
Mac Giolla, Phadraig C., El-Helaali, R., Nunn, J H., Burke, E., McCallion, P., McGlinchey, E., McCarron, M , National levels of reported difficulty in tooth and denture cleaning among an ageing population with intellectual disabilities., 15, (3), 2014, p48 - 53
McCarron, M., O'Dwyer, M., Burke, E., McGlinchey, E., McCallion, P., Epidemiology of Epilepsy in Older Adults with an Intellectual Disability in Ireland, American journal of intellectual disabilities, 2014, p253 - 260
McGlinchey, E., McCarron, M., McCallion, P, Examining the usefulness of measures of executive function in individuals with down syndrome: A comparative review, IASSID, Vienna, July, 2014
McGlinchey, E., McCarron, M., McCallion, P, Cognitive reserve: Implications for research in dementia for people with down syndrome, IASSID, Vienna, July, 2014
MacGiolla Phadraig, C., Burke, E., McCallion, P., McGlinchey, E., Nunn, J., McCarron, M, Dental attendance among older adults , Special Care in Dentistry, 2014
Burke E, McCarron M, Carroll R, McGlinchey E, McCallion P, What it's like to grow older: the aging perceptions of people with an intellectual disability in Ireland., Intellectual and developmental disabilities, 52, (3), 2014, p205-19
Understanding the similarities and differences in aging with an intellectual disability: Linking Irish general population and intellectual disability datasets in, editor(s)R. Urbano , Using Secondary Datasets to Understand Persons with Developmental Disabilities and their Families , New York, Academic Press, 2013, pp206 - 233, [McCallion, P., Swinburne, J., Burke, E., McGlinchey, E., McCarron, M.]
McCarron, M., Swinburne, J., Burke, E., McGlinchey, E., Carroll, R., McCallion, P, Patterns of multimorbidity in an older population of persons with an intellectual disability: results from the intellectual disability supplement to the Irish longitudinal study on aging (IDS-TILDA)., Research in developmental disabilities, 34, (1), 2013, p521 - 527
McGlinchey, E., McCallion, P., Burke, E., Carroll, R., McCarron, M, Exploring the Issue of Employment for Adults with an Intellectual Disability in Ireland, Journal of applied research in intellectual disabilities, 26, (4), 2013, p335 - 343
McCarron, M., McGlinchey,E., Burke, E., O'Dwyer, M., McCallion, P., Epidemology of epilepsy in Older Adults with an Intellectual Disability, Irish Journal of Medical Science Volume 182 Supplement 6 DOI 10.1007/s11845-013-0985-z, 61st Annual & Scientific Meeting of the Irish Gerontological Society, Croke Park, 20-21 September, 2013
McCallion P, Burke E, Swinburne J, McGlinchey E, Carroll R & McCarron M, Influence of environment, predisposing, enabling and need variables on personal health choices of adults with intellectual disability., Health, 5, (4), 2013, p749 - 756
Burke, E., McCallion, P., McGlinchey, E., McCarron, M., , The Ageing Perceptions of Older Adults with an Intellectual Disability in Ireland, 14th Healthcare Interdisciplinary Research Conference & Student Colloqium, School of Nursing & Midwifery, Trinity College Dublin, November 2013, 2013
McGlinchey E, McCallion P, Burke E, Carroll R & McCarron M, Exploring the issue of employment of adults with an intellectual disability in Ireland., JARID, 26, (4), 2013, p335-43
McGlinchey, E., McCallion, P., Burke, E., McCarron, M., Examining the area of Employment for Adults with an Intellectual Disability, 14th Healthcare Interdisciplinary Research Conference & Student Colloqium, School of Nursing & Midwifery, Trinity College Dublin, November, 2013
McCarron, M., Swinburne. J., Burke. E., McGlinchey, E., & McCallion, P, Physical health and multiple morbidity in Irish people with an intellectual disabiltiy as they age., IASSID World Congress, Halifax, Canada, July , 2012
McGlinchey, E., Carroll, R., McCarron, M., McCallion, P, An Exploration of the Employment Status of people over forty with an Intellectual disability in Ireland, Irish Gerontology Society Conference, University College Cork, 2012
McGlinchey, E., McCallion, P., Carroll, R., Burke, E., McCarron, M, Behavioural Health of Older Adults wiht an Intellectual Disability: Findings from the Intellectual Disability, 2012 IASSIDD World Congress , Halifax, Canada, 2012
McGlinchey, E., McCallion, P., Swinburne, J., Carroll, R., McCarron, M., Life Long Learning and Employment in Older Irish Adults with an Intellectual Disability., IASSID World Congress, Halifax, Canada, July, 2012
McCallion, P., Swinburne, J., Burke, E., McGlinchey,E., Carroll, R., McCarron, M., Health Care Utilisation by Adults with an Intellectual Disability Ageing in Ireland., IASSID World Congress, Halifax, Canada, July, 2012
McGlinchey, E., Carroll, R., McCarron, M., McCallion, P, The importance of learning and employment opportunities in social development and well being of older adults wiht an intellectual disability in Ireland, IDS@UL, 2012, 2012
McGlinchey, E., McCallion, P., Carroll, R., Burke, E., McCarron, M, Behavioural Health of Older Adults wiht an Intellectual Disability: Findings from the Intellectual Disability, Interdisciplinary Research Conference, Optimising Health in the 21st Century, 2012
Non-Peer-Reviewed Publications
McCarron, M., Allen, A.P., Buttery, N., Dennehy, H., Kennelly, S., Corr, C., Dunne, P., Daly, L., McCallion P., McGlinchey, E., Voices of Experience: Building Post-Diagnostic Dementia Support Guidelines for People with an Intellectual Disability. Brief Report, 5, Trinity College Dublin, January, 2024
McCarron, M., Daly, L., McCallion, P., Allen, A.P., Buttery, N., Dennehy, H., Kennelly, S., Corr, C., Dunne, P., McGlinchey, E., Post-Diagnostic Dementia Support Guidelines for People with an Intellectual Disability, 17, Trinity College Dublin, March, 2024
Eimear McGlinchey, Cognitive Reserve and Down syndrome, Alzheimer Association Cognitive Reserve and Down syndrome Professional Interest Area, 28/11/2023, 2023, Alzheimer Association
McGlinchey, E., Bray, F., Fortea, J., Yap, M-L., Kennelly, S. & McCarron, M., Complex Joy: A Celebration of Brain Health in People with Down Syndrome, Creative Brain Week 2023, Science Gallery, Trinity College Dublin, 9th March, 2023
McCarron, M., Mc Causland D., Wormald, A., McGlinchey, E., MacGiolla Phadraig, C., Brennan, D., and Burke, EA, Longitudinal Dynamics in the Ageing of People with an Intellectual Disability: Evidence from IDS-TILDA, Data and Knowledge Sharing and Dissemination, Department of Children, Equality, Disability, Integration and Youth, Dec 8th 2023, 2023, IDS-TILDA and Department of Children, Equality, Disability, Integration and Youth
Fallon, M., McGlinchey, E. & McCarron, M., Modifiable lifestyle factors associated with age of dementia diagnosis., Horizon 21 Consortium F2F Meeting., Munich, Germany., 15th - 16th June, 2023
Darren McCausland, Andrew P. Allen, Margaret Haigh, Fintan Sheerin, Eilish Burke, Eimear McGlinchey, Fidelma Flannery, Niamh Mulryan, Philip McCallion and Mary McCarron, Overcoming Adversity: The Continuing Impact of COVID-19 on People Ageing with an Intellectual Disability in Ireland. Findings from the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA) COVID-19 Sub-Study, Trinity College Dublin, December, 2021
Marianne Fallon & Dr. Eimear McGlinchey, Promoting Brain Health Across the Lifespan: People with an Intellectual Disability, Learning Disabilities and Dementia Community of Practice meeting, Online- Wales, 15th July 2021, 2021, Rebecca Hamner, Public Health Wales
McCarron, Mary; McCausland, Darren; Allen, Andrew; Luus, Retha; Sheerin, Fintan; Burke, Eilish; McGlinchey, Eimear; Flannery, Fidelma; McCallion, Philip, The impact of COVID-19 on people ageing with an intellectual disability in Ireland, Dublin, December, 2020
McCarron, M., McCausland, D., Allen, A.P., Luus, R., Sheerin, F., Burke, E., McGlinchey, E., Flannery, F., & McCallion, P., THE IMPACT OF COVID-19 on People Ageing with an Intellectual Disability in Ireland 2020 - Evidence from Wave 4 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA), Dublin, December, 2020
2. McGlinchey, E., Burke, E., McCallion, P., Haigh, M., O'Donovan ,M., McCarron, M. , Health and Well-Being of Older Adults in St Joseph's Intellectual Disability Service: Baseline Report., Trinity Centre for Ageing and Intellectual Disability, Dublin, 2018
Mary McCarron, Philip McCallion, Rachael Carroll, Eilish Burke, Eimear McGlinchey, Mary-Ann O'Donovan, Darren McCausland, Fintan Sheerin, Maire O'Dwyer, Sinead Foran, Caoimhin MacGiolla Phadraig, Niamh Mulryan, Juliette O'Connell and Judy Ryan., Health, Wellbeing and Social Inclusion: Ageing with an Intellectual Disability in Ireland Evidence from the First Ten Years of The Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA) Wave 3 IDS-TILDA, Trinity College Dublin, 2017
McCarron, M., Burke, E., McGlinchey, E., McCausland, D., O'Dwyer, M., O'Donovan, M.A., McCallion, P., Value for Money and Policy Review of Disability Services in ireland, Value for Money and Policy Review of Disability Services in ireland, Hawkins House, 2015
McCarron. ,M., McCallion, P., Carroll, R., Burke, E., McGlinchey, E., McCausland, D., Cleary, E., Shivers, C., Advancing Years, Different Challenges: Wave 2 IDS-TILDA, 2014
McGlinchey, E., McCausland, D., McCarron, M., Burke, E., McCallion, P. , Advancing Years, Different Challenges: Wave 2 IDS-TILDA: An Accessible Report. , Dublin: Trinity College Dublin, 2014
Mary McCarron, Philip McCallion, Rachael Carroll, Eilish Burke, Eimear Cleary, Darren McCausland, Eimear McGlinchy, Mary Ann O'Donovan, Niamh Mulryan, and Carolyn Shivers, Advancing Years, Different Challenges: Wave 2 IDS-TILDA. Findings on the ageing of people with an intellectual disability., Dublin, 2014
McCarron. M., Swinburne. J., Burke, E., McGlinchey, E., Mulryan, N., Andrews, V., Foran, S., & McCallion. P., Growing Older with an Intellectual Disability in Ireland 2011; First Results from the The Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing., 2011
McCarron, M., Swinburne, J., Burke, EA., McGlinchey, E., Mulryan, N., Andrews, V., Foran, S. and McCallion P. , Growing Older with an Intellectual Disability in Ireland, First results from the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing -An Accessible Report. , Accessible version, Trinity College Dublin, 2011
Research Expertise
Projects
- Title
- Including the Voices of Experience in Developing Accessible Post-Diagnostic Dementia Support Guidelines for People with an Intellectual Disability
- Summary
- People with an Intellectual Disability (ID) are at greater risk of developing dementia than the general population. In particular, those with Down syndrome (DS) are the world's largest group with a genetic risk for Alzheimer's disease (AD), given overexpression of the amyloid precursor protein (APP) gene located on chromosome 21. Despite this high risk, services, both in the general population and ID specific services are ill prepared to provide post-diagnostic support to people with an ID and dementia and their carers, meaning unequal and inadequate access to supports for many across the country. There is currently little systematic research to guide development of post-diagnostic supports for people with ID. With its recent establishment, the National Intellectual Disability Memory Service (NIDMS) in Ireland will offer an accessible systematic approach to diagnosis, resulting in an increased need for post-diagnostic supports for people with ID. The aim of the study, therefore, is to develop accessible best practice guidelines for post-diagnostic dementia supports for people with an intellectual disability in Ireland. This will be achieved through: 1) Identifying current guidelines/recommendations on post-diagnostic dementia care nationally and internationally for the general population and for people with ID. 2) Understanding the current landscape of post-diagnostic dementia support for people with an intellectual disability in Ireland. 3) Understanding the lived experience of accessing and using post-diagnostic dementia support services for people with ID/DS and their families and desires for post-diagnostic services. 4) Identifying gold standard approaches/guidelines to post diagnostic dementia care from specialist ID service providers. The resulting guidelines will identify needed adjustments, and make recommendations for all services on how best to provide post-diagnostic dementia supports to people with ID and their families/carers.
- Funding Agency
- Health Research Charities Ireland
- Date From
- 01/01/2021
- Date To
- 01/11/2023
- Title
- PREVENT dementia -DS
- Summary
- This study will examine the effect of Alzheimer's disease pathology on the organisation of brain networks in people with Down syndrome compared to people in the general population who are at high risk of Alzheimer's disease and people who are at low risk of Alzheimer's disease. People with Down syndrome are at high risk of Alzheimer's disease (AD) because genetic reasons. However, they are typically excluded from Alzheimer's disease prevention research. Including people with Down syndrome in this type of research is important from an equity perspective and could also help us to understand the development and progression of Alzheimer's disease for all. The PREVENT study, is part of an international study examining early biomarkers of Alzheimer's disease in the general population in mid-life and before clinical stages of the disease. This pilot will adapt the PREVENT protocol so that it is suitable for people with Down syndrome. The neuroimaging, blood and neuropsychological data collected in this process will then be analyzed. The organisation of brain networks in people with Down syndrome who don't have any symptoms of Alzheimer's disease will be compared to people from the PREVENT study at high risk for Alzheimer's disease and at low risk for Alzheimer's disease. Neurofilament light protein is a protein that can be measured in the blood and has been found to be a reliable marker of Alzheimer's disease pathology in people with Down syndrome. The association between this protein in relation to the organisation of brain networks in people with Down syndrome will be examined. The relationship between the organisation of brain networks and scores on neuropsychological assessments will be examined. This will give us a better understanding of the early cognitive changes as a result of Alzheimer's disease in people with Down syndrome. Through establishing the adapted PREVENT protocol, this pilot will inform the development of a large national study - PREVENT dementia - DS.
- Funding Agency
- Alzheimer's Association, Alzheimer's UK, Global Brain Health Institute
- Date From
- 01/09/2021
- Date To
- 31/08/2022
- Title
- arly Biomarkers of Alzheimer's Disease in People with Down syndrome
- Summary
- People with Down syndrome (DS) have a genetic predisposition to Alzheimer's disease (AD) but have typically been excluded from AD prevention research. Including people with DS is important from an equity perspective and to provide insight into the development and progression of Alzheimer's disease. The PREVENT study, is part of an international study examining early biomarkers of AD in the general population in mid-life and before clinical stages of the disease. This pilot will adapt the PREVENT protocol so that it is suitable for people with DS, and will include people from 20-29, before the onset of AD pathology. Neuroimaging, blood and neuropsychological data collected will be analysed. Specifically, the organisation of brain networks in people with DS prior to the onset of AD pathology will be analysed and it's association with Neurofilament Light (NfL), a protein measured in blood examined. NfL has been found to be a reliable marker of AD pathology in people with DS. This study will give a better understanding of the earliest changes in the AD process in people with DS. Through establishing the adapted PREVENT protocol, this project will inform the development of a large national study - PREVENT dementia - DS.
- Funding Agency
- Deans Rersearch Initiative
- Date From
- 01/07/2021
- Title
- IDS-TILDA
- Summary
- Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing Wave 5
- Funding Agency
- Health Research Board
- Date From
- 01/11/2021
- Date To
- 01/11/2024
- Title
- Meaning in Life in Older Adults with Intellectual Disability: findings from the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA).
- Funding Agency
- Health Research Board
- Date From
- 13/06/2022
- Date To
- 12/08/2022
- Title
- Development of a Multimodal intervention framework for Alzheimer"s Disease in people with Down Syndrome
- Summary
- People with Down syndrome (DS) represent the world"s largest population with a genetic predisposition to Alzheimer"s disease (AD). Virtually everyone with DS has the neuropathology of AD by the age of 40, and yet this population have largely been excluded from both pharmacological and non-pharmacological trials in AD. The FINGER study has shown the effectiveness of non-pharmacological intervention in the general population, but has, up until now not included people with an intellectual disability. The MINDS working group aims to address this inequity through developing a multimodal intervention framework for AD in people with DS, targeting social and lifestyle factors with the aim of delaying cognitive decline and increasing quality of life in this population. Given the ubiquity of AD pathology in people with DS, early intervention could prevent or delay later complications. The intervention used in the general population needs to be adapted to take into account the unique needs of people with DS, including pre-existing intellectual disability, support structures and living arrangements. The MINDS working group will leverage existing connections of the Horizon 21 European Down syndrome Consortium and will establish networks with the WW FINGER study to develop this intervention framework. A collective intelligence approach will be used across two workshops in order to do this. People with DS and their family carers will inform and support the development of the intervention framework throughout the process, leading to the establishment of a Europe wide PPI network for brain health in people with DS. The resulting intervention framework will be available to the wider research community to support those working with this underserved population.
- Funding Agency
- Joint Partnership Neurodegenerative Research (JPND)
- Title
- Raising Awareness of Down syndrome in South Africa
- Summary
- We aim to better understand the situation for people with DS in SA, to plan how to address inequities as identified by them. To do this we will: - Hold workshops to: o Identify shared learning between Ireland, Spain and South Africa as well as wider global perspectives o Discuss the existing strengths in SA o Plan how best to include the voices of people with DS and their families o Address accessibility and consent issues - Engage the Down syndrome association of SA and other DS services - Co-develop next project stages
- Funding Agency
- Atlantic Institute
- Date From
- July 2023
- Date To
- July 2024
Recognition
Representations
Journal Reviewer Journal of Intellectual Disability Research
Reviewer for Research in Developmental Disabilities
Reviewer for Journal of Applied Research in Intellectual Disabilities
Chair of LEAP Committee in School of Nursing and Midwifery
Journal Reviewer for Journal of Intellectual Disabllities
Journal reviewer for International Journal for Geriatric Psychiatry
Journal reviewer for Environmental Research and Public Health
Journal reviewer for Journal of Policy and Practice in Intellectual Disabilities
Journal reviewer for Neurobiology of Ageing
Journal reviewer for Intelligence
International Advisory Committee for Journal of Intellectual Disabilities