Dr. Eimear Mc Glinchey

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.

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.

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.

Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing Wave 5