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In a study of older Irish women with Down Syndrome, almost all had dementia 20 years later

At the end of the long-term study, 97.4% of participants had developed dementia.

File photo. The report authors are urging testing for dementia at an earlier stage than the rest of the population.
File photo. The report authors are urging testing for dementia at an earlier stage than the rest of the population.
Image: Shutterstock/Dan Kosmayer

A LONG-TERM study on adults with Down Syndrome in Ireland has found that people with this condition are at a much higher risk of developing dementia than the general population.

The study followed 77 women with Down Syndrome over the age of 35 for 20 years. In that time 97.4% of the women assessed had developed dementia. The prevalence rates of dementia in the general population over the age of 65 ranges between 5% and 7%.

The average age that the women were diagnosed with dementia was 55 years, which is almost four years later than the international average.

The report’s authors have urged the government to introduce measures to ensure that services and care for older people with Down Syndrome are reflective of the points highlighted in their research.

Much higher risk

The researchers calculated the risk of people with Down Syndrome developing dementia at different ages.

At age 50, there was a 23.4% risk. This rises to 45% by age 55, and then to 88% by the age of 65.

The researchers also said that the average length of survival for dementia sufferers with Down Syndrome was seven years, rather than three to five as previously thought.

“This new data has major implications from a care and resource perspective,” they said.

Furthermore, almost 80% of people with Down Syndrome and dementia will develop new onset epilepsy.

Policy changes

The fact that dementia diagnoses are made later in Ireland than the international average means that many are only diagnosed at a very advanced stage, according to lead study author Professor Mary McCarron.

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Professor McCarron reiterated a number of measures that are needed to offer care and support for people with Down Syndrome and their families as they get older, having addressed TDs and Senators on the matter recently.

She urged introducing dementia assessments for people with Down Syndrome at a stage far earlier than is usual for the general population.

McCarron also called for the establishment of specialist memory clinics, with trained and experienced staff, to offer advice and support to patients and their families.

A greater number of experts trained to specifically work with this population, and enhanced education programmes for healthcare professionals in diagnosing early onset dementia would also be welcome.

McCarron said: “We now have the statistics for Ireland, and clearly radical changes need to be made in order to respond and address the needs of this often vulnerable group of people to help diagnose, support, treat and help prevent dementia.

We need to support people with Down syndrome and dementia to live in the home of their choice with their family or friends for as long as possible.  Supports should include appropriate dementia specific respite services for family and/or peers in group homes.

This study from the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing was published in the Journal of Intellectual Disability Research.

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Sean Murray

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