Big dementia risk for people with Down syndrome

80% will develop it by age 65
  • Deborah Condon

People with Down syndrome have a significantly increased risk of developing dementia, however many struggle to get a diagnosis, experts have said.

Research from Trinity College Dublin has shown that the risk of dementia is very high in people with an intellectual disability, particularly those with Down syndrome.

In fact, by the age of 65, 80% of people with Down syndrome will develop dementia, compared to between 4-8% of the general population aged 65 and older.

This issue was highlighted during the inaugural webinar of the National Intellectual Disability Memory Clinic in Tallaght University Hospital (TUH).

The webinar was jointly organised by the partners of the clinic - the Trinity Centre for Ageing and Intellectual Disability (TCAID) at Trinity College Dublin, Tallaght University Hospital (TUH) and the Daughters of Charity Disability Support Service.

It highlighted the fact that people with intellectual disabilities are now living longer thanks to improvements in health and social services. However, despite this, they continue to experience greater and more complex health and social care issues than their peers in the general population.

Many also struggle to get a diagnosis and this can leave their carers overwhelmed. The earlier a diagnosis is made, the sooner appropriate supports can be put in place.

The memory clinic at TUH aims to address some of those issues directly by providing diagnosis and post-diagnostic support, and promoting prevention strategies and brain health.

The clinic is a pilot service that is run on a part-time basis from TUH. It runs in parallel with the mainstream Memory Assessment and Support Service in the hospital and uses the expertise of an advanced nurse practitioner and a clinical nurse specialist from the Daughters of Charity Disability Support Services.

The clinic can take referrals from GPs or psychiatrists who have a concern about someone with an intellectual disability. Its executive director is Prof Mary McCarron, a recognised global expert in dementia among the intellectual disability population.

"For families and caregivers, there has been a real struggle to get a proper diagnosis of dementia. Now that the national clinic is up and running, we are seeing a need to understand dementia and to provide advice on what can be done, both around medication and other interventions, and how families and caregivers can be supported as the condition progresses.

"At the same time, we must also promote brain health and dementia prevention within this population," she commented.

Prof Sean Kennelly is clinical director of the memory clinic at TUH. He pointed out that over time, the hospital has developed "as a centre of excellence for dementia care and cognitive research".

"We know from the mainstream memory assessment and support service that is running since 2016 that proper diagnosis is the vital first step towards providing the kinds of supports that people need. And the earlier we can diagnose, the better. Without diagnosis, health services cannot move forward with a patient," he said.

The webinar was supported by the 'Dementia: Understand Together' campaign and was held to held to mark World Alzheimer's Day (September 21).

 


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