Irish people with intellectual disability who have participated in a 10-year study on ageing “have made an immense contribution to the understanding of dementia”, according to the leader of the research.
Trinity College’s professor of ageing and intellectual disability Mary McCarron said it had led to “an awakening across Ireland” and given voice to people who were marginalised, many of who had never had a proper health evaluation.
Known as the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-Tilda), it was the first of its kind in the world. It has been monitoring ageing in Ireland among people with an intellectual disability above the age of 40. More than 700 people have taken part, and have remained with the study since its inception.
One of the first steps was to ask participants to send in a picture of themselves and say what ageing meant to them, Prof McCarron said. “Within two weeks, we had 250 responses. We began the conversation that continues today.”
The inclusive approach meant people with intellectual disabilities are now teaching fieldworkers and designing resource materials, which “challenges assumptions about what people with intellectual disability can do”.
More than 150 people with intellectual disabilities, their families and carers attended a celebratory event in TCD on Tuesday, which also marked the opening of the new Trinity Centre for Excellence in Ageing and Intellectual Disability.
Prof McCarron said people with an intellectual disability continue to present with greater and more complex health and social issues at much younger ages than peers in the general population. “Frequently the health problems of people with an intellectual disability go unrecognised and, as a result, are unmet, especially in areas such as medication management, mental health, dementia, bone health and end-of-life care,” she added.
IDS-Tilda found people with an intellectual disability were nearly twice as likely to be consistently lonely, compared to the wider population.
A key concern revealed in the study was that 80 per cent of participants could not find their way around their community alone showing a severely limited potential for independence. IDS-Tilda’s impact on healthcare and policy was indicated by its research which revealed up to 80 per cent of people with Down syndrome develop dementia by 65 years of age, said Prof McCarron. It had established the need for regular dementia assessments for people with an intellectual disability as well as for planning post-diagnostic supports.
Sandra Flanagan, one of a family of 12 children, who became the main carer for her sister Maggie, said in the past it was a case “getting on with it”. Ten years on, the study had given her “peace of mind” and Maggie a “care road-map” which included her future wishes and support needs.
A priority area for IDS-Tilda is the movement of people with intellectual disability from institutional care to community dwellings. Its TCD team is working with service providers, assessing how health, quality of life and social participation are impacted by changes in living circumstances.
Prof McCarron said Ireland was now the recognised leader in ageing and intellectual disability research, with one of the richest data sets in the world. This encouraged the university to launch the Trinity Centre for Ageing and Intellectual Disability.
The Government’s policy of moving people with an intellectual disability from institutional settings to community-based alternatives is to feature an international summit on ageing with an intellectual disability in TCD this week.
