World Down Syndrome Day Summit explores 20 years of Trinity research into Down syndrome and dementia

Minister Finian McGrath, Ms Mei Lin Yap and Professor Mary McCarron at the TCAID summit in Dublin to mark World Down Syndrome Day 2019.

The Trinity Centre for Ageing with an Intellectual Disability (TCAID) marked World Down Syndrome Day 2019 yesterday by hosting a summit that presented 20 years of research and explored the latest in the science surrounding Down syndrome and dementia.

Research findings from TCAID and others means that Ireland now has one of the richest data sets in the world on the health and well-being of adults with an intellectual disability. This research has shown that the risk of dementia is very high in people with Down syndrome.

By 65 years of age, 80% of people with Down syndrome will develop dementia with the average age of onset at 52 years of age. This compares to a prevalence of dementia in the general population of between 4.6% and 8.6% in people at 65 years and older.

Persons with Down syndrome now live to older age, largely due to improved care and the commitment of families and people with Down syndrome themselves, to improve their lives. Despite these improvements, people with Down syndrome continue to experience greater and more complex health and social issues than their peers in the general population.

Speaking at yesterday’s event, Director of TCAID and Principal Investigator of IDS-TILDA Professor Mary McCarron said:

There are still many aspects of Down syndrome and dementia that we do not understand.

Today’s summit brings together national and international experts to discuss and explore the latest research from Ireland and abroad, and to look at ways to assess and care for people with dementia and Down syndrome. In Ireland people with Down syndrome and their carers struggle to get a diagnosis of dementia and post diagnostic supports are sketchy and variable.

There is a real and pressing urgency in Ireland to develop skills in dementia recognition and assessment for people with Down syndrome and other forms of intellectual disability; we need valid diagnostic standards, and we need to determine what specific neuropathology actually causes dementia.

Professor McCarron emphasized the importance of focusing on prevention of dementia and brain health. Winner of the 2019 Health Research Board Impact Award, Professor McCarron seeks to change this. She said: “We can learn a lot more if we work together. That is why today’s summit is crucial on World Down Syndrome Day as we hear about research taking place in Ireland and abroad. Successful research requires that people with an intellectual disability, their carers, service providers and family members collaborate if we are to advance happy, healthy ageing for all. Otherwise ageing in poor health for this population will be an empty prize.”

Professor McCarron also spoke of the problems associated with accessing mainstream memory clinics for people with Down syndrome: “Access is often based on chronological age which is not suitable for a population that uniquely can develop dementia in their 40s or 50s and be denied access to a service because they are not over 65 years of age. Healthcare professionals in mainstream memory clinics often lack the appropriate skillset and expertise to assess and diagnose dementia in this population which is often highly complex.”

Another critical issue highlighted at the summit is that people with Down syndrome are often absent from clinical trials and prevention studies despite our knowledge of their increased susceptibility with a genetic pre disposition to develop dementia. Professor McCarron emphasizes the urgency of focusing on prevention and brain health.

Attendees at yesterday’s TCAID summit at St Jame’s Hospital to mark World Down Syndrome Day 2019.

Details were announced by Professor McCarron of the opening of the first National Memory Clinic for people with Down syndrome and other forms of Intellectual Disability. “We are particularly pleased to be announcing these details on World Down Syndrome Day,” she said. More details on the launch of the Clinic will come in due course.

Minister of State with special responsibility for disabilities Finian McGrath opened yesterday’s summit and said: “Research must always stay ambitious if we are to find ways to prevent or slow down the development of dementia in anyone at risk. People with Down syndrome may well hold the key to unlock our understanding of dementia, meaning that everyone working in the area of dementia research– every person in our society – can potentially benefit.”

 The summit presented national and international research on Down syndrome, looking at prevalence of dementia in this population, the challenge of developing assessment instruments, and the need for post-diagnostic support once someone receives a diagnosis of dementia. Exciting discoveries in biomarkers and retinal research may provide opportunities to detect dementia when it starts, so that people with Down syndrome have every chance to slow down the process.

Mei Lin Yap, a woman with Down syndrome, made a presentation on her own experiences which will include a screening of ‘Ageing with PrIDe’, a documentary on a day-in-the-life of Mei Lin as she explores ageing research and identifies opportunities to improve her health and well-being in advance of her 30th birthday.  ‘Ageing with PrIDe’ can be viewed here: https://www.youtube.com/watch?v=S2kgoeXp67E

Ms Mei Lin Yap who presented her own experience of ageing with Down syndrome at the summit.

The summit was supported by the HSE’s National Dementia Office, the National Federation of Voluntary Bodies Providing Supports to People with Intellectual Disability and the Daughters of Charity Disability Support Service.