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Trinity Centre for Ageing and Intellectual Disability

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Introduction to Research Theme: Dementia

People with Down syndrome represent the world’s largest population with a genetic predisposition to Alzheimer’s disease (AD). Everyone with Down syndrome has the neuropathological hallmarks of AD by age 40, and a cumulative risk of 88% of developing Alzheimer-type dementia (DS-AD) by age 65. The most common cause of Down syndrome is an extra copy of chromosome 21 – trisomy 21. Amyloid precursor protein (APP) is produced by chromosome 21; consequently, people with Down syndrome overexpress APP, leading to the development of amyloid plaques – the hallmark of AD.

While people with an intellectual disability from other aetiologies don’t have a genetic risk for Alzheimer’s disease, the risk for developing dementia is approximately 5 times higher than in the general population.

Diagnosis and assessment for dementia for people with an intellectual disability is challenging because of pre-existing level of intellectual disability and there is no standardised assessment protocol.

The research completed by the Centre

  • Advances standardization and validation of assessment instruments.

  • Examines biomarkers of Alzheimer’s Disease in people with Down syndrome.

  • Offers practical strategies for care, and design of living environments.

  • Builds valuable information on improving service provision and quality of life for people with Down syndrome and dementia.

  • Promotes future planning and services provider strategy development for those with dementia and Down syndrome.

  • Ensures person-centred and dementia appropriate end of life care

Projects Under the Dementia Theme

  • IDS-TILDA

  • PREVENT Dementia -DS

  • Best Practice Post-Diagnostic Guidelines for Dementia for People with an Intellectual Disability 

  • Mortality and Dementia in People with Down syndrome

  • Supporting Brain Health in People with Down syndrome in South Africa

  • Longitudinal Research in AVISTA

  • Cognitive Stimulation Therapy in People with Intellectual Disability and Dementia 

Work within IDS-TILDA is expanded with additional studies that include The 20 year Longitudinal Study on Dementia and Down Syndrome; Brain Exercises for Adults with Down Syndrome (BEADS Study) and development of a memory clinic model offering timely screening, assessment and post diagnostic support. This work has informed the design dementia friendly living environments at the Daughters of Charity Disability Support Service which received the 2014 Specialist Care Centre of the Year and the 2014 Building Project of the Year Irish Healthcare Centre Awards. At the official opening Minister of State Kathleen Lynch TD said the two homes 'will serve as a model for all dementia care initiatives in Ireland. They are not just about new construction and interior design, they also include innovative programming approaches. The development has potential to influence the strategies that will be considered and implemented for all persons with dementia.' Work under this theme is closely linked with the Global Brain Institute in Trinity College and with the All-Ireland Institute on Palliative and Hospice Care

Collaborations and Impact

  • Global Brain Health

  • Horizon 21 European Down syndrome Consortium

  • Dementia Trials Ireland

  • National Task Group in Intellectual Disabilities and Dementia

  • Down syndrome Ireland

Dementia Team