New research by Trinity staff has shown that the risk of developing dementia is much higher for people with Down Syndrome than it is for the general population.
Researchers followed 77 Irish women with Down Syndrome over the age of 35 and annually assessed them for symptoms of dementia. Over a 20-year period, 97.4 per cent of participants developed dementia. The average age for the onset of dementia among participants was 55 years. Researchers have put the risk of developing dementia by age 65 at 88 per cent for people with Down Syndrome. Only an estimated five to seven per cent of people aged 65 years and older have dementia among the general population.
These findings, published in the Journal of Intellectual Disability Research, are similar to those from other studies, but this is the first comprehensive longitudinal study in Ireland on the issue.
Prof Mary McCarron, the principal investigator for the Irish Disability Supplement to the Irish Longitudinal Study on Ageing (TILDA), which carried out this research, has called on the government to implement urgent changes in assessment practices, care planning, education and support for people with Down Syndrome given the high prevalence of dementia among this group. Until this study, it was believed that people with Down Syndrome only live an average of three to five years after developing dementia. This latest research suggests they live an average of seven years after developing the disease, which has implications for the care and resources they need.
At a recent presentation to an all-party Oireachtas committee on dementia, McCarron highlighted the need for people with Down Syndrome to be assessed for dementia at much younger ages than is necessary for other groups. International recommendations call for assessments beginning at 35 years of age for people with Down Syndrome, but McCarron points out that many Irish people with Down Syndrome are not diagnosed with dementia until the condition has reached an advanced stage.
She also called for the use of assessment tools appropriate for people with Down Syndrome, specific training for experts and clinicians in working with people with Down Syndrome and for people with Down Syndrome to be included in clinical trials for new treatments for dementia. Currently, people with various disabilities are often excluded from such trials, but McCarron believes a population at such high risk of dementia should not be excluded.
In a press statement, 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.”
TILDA, which was established in 2006, is a large study examining the social, economic, and health circumstances of over 8,000 community-dwelling adults aged 50 years and older, living in Ireland. The TILDA study is also connected to 13 other similar international longitudinal studies on ageing, which allows cross-country comparisons of health, wealth and happiness among older adults.
