High-risk rates for dementia for people with Down syndrome- Trinity study

The 20-year study published in the ‘Journal of Intellectual Disability Research’ also found significantly earlier onset than in the general population and high risk rates for dementia for people with Down syndrome.

Lead author and principal investigator for the Irish Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA), Professor Mary McCarron said that the results means that there must be urgent changes in diagnosis and assessment practices, care planning, education and support.

“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,” said Prof McCarron.

“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.

“Clinical support and education should be provided to family and staff caregivers. We need tailored dementia specific day programmes and residential options, as well as care approaches which are stress free and environments which are dementia capable.”

The key findings of the report included that 97.4 per cent of the women assessed developed dementia over the 20 year period. In the general population, the estimated prevalence rates are 5-7 per cent in people aged 65 years and over

The risk of developing dementia in people with Down syndrome is 23.4 per cent at age 50, 45 per cent by age 55 and 88 per cent by the age of 65.

These risk rates are significantly higher than in the general population.