Major research summit on Down syndrome

Big focus on higher risk of dementia
  • Deborah Condon

People with Down syndrome have a much higher risk of developing dementia, however it can be a struggle for them to get a diagnosis, a major summit in Dublin has been told.

The summit was hosted by the Trinity Centre for Ageing and Intellectual Disability (TCAID) at Trinity College Dublin (TCD) to mark World Down Syndrome Day (March 21).

Thanks to research findings from TCAID and others, Ireland now has one of the richest data sets worldwide on the health and wellbeing of adults with an intellectual disability. This research has shown that the risk of dementia is very high in people with Down syndrome.

In fact, by the age of 65, 80% of people with Down syndrome have dementia, with an average onset of 52 years. The prevalence of dementia among those aged 65 and older in the general population is 4-8%.

According to TCAID director, Prof Mary McCarron, there are still many aspects of Down syndrome and dementia that we do not understand.

"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," she said.

Meanwhile, Prof McCarron emphasised to the summit that collaboration is key.

"We can learn a lot more if we work together. That is why this 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," she commented.

Prof McCarron also highlighted the problems people with Down syndrome have in accessing mainstream memory clinics.

"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," she noted.

Prof McCarron announced details of the opening of the first national memory clinic for people with Down syndrome and other forms of intellectual disability, and said that she was ‘particularly pleased' to make the announcement on World Down Syndrome Day.

Another speaker at the summit was Mei Lin Yap, who has Down syndrome. Her documentary, Ageing with PrIDe, can be viewed here.

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.


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