Aging is something that affects everyone — but for adults with intellectual disabilities, the journey is often very different. This week on Disability Matters, Dr. Eilish Burke from Trinity College Dublin joined host John Comiskey to talk about IDS-TILDA — the Intellectual Disability Supplement to the Irish Longitudinal Study on Aging — a groundbreaking national study exploring how adults with intellectual disabilities experience aging in Ireland.
How the Study Began
IDS-TILDA was founded in 2007 by Professor Mary McCarron as a sister study to the well-known TILDA project led by Professor Rose Anne Kenny. While TILDA examines aging in the general population, IDS-TILDA focuses specifically on adults with intellectual disabilities — a group often excluded from large-scale research until now.
As Dr. Burke explains:
“People with intellectual disabilities are living longer than ever before — especially those with Down syndrome. Decades ago, many didn’t live past childhood. Now, we have people living well into their 70s. That’s a tremendous success story — but it also brings new challenges.”
Who Took Part
The study began by sampling 10% of adults with intellectual disabilities in Ireland using the National Disability Database. The participants were aged 40 and over, reflecting the fact that aging-related health issues often appear earlier in this group.
About 55% of the participants are women, and while most are registered for disability services, many others in Ireland remain uncounted — living independently or outside formal systems.
The Role of Families and Carers
Families remain at the heart of care. IDS-TILDA includes a special strand focusing on carers, capturing the voices of parents and siblings supporting loved ones at home.
“The love families have for their children and siblings shines through,” says Dr. Burke. “But we also heard about exhaustion, loneliness, and patchy respite support. For some, it’s like a postcode lottery — access depends on where you live.”
One recurring theme is the fear of the future — what happens when parents grow old or pass away.
“It’s something many families avoid talking about, but planning ahead is vital,” she stresses. “We need to make it easier to have those conversations.”
Changing Living Arrangements
When IDS-TILDA began, around 50% of participants lived in residential or institutional settings. Today, that number has dropped to about 5–6%. Most now live in community group homes or independently — a major shift driven by Ireland’s congregated settings policy.
“It’s wonderful to see people living fuller, more independent lives in their communities,” says Dr. Burke.
Health and Wellbeing
The study paints a complex picture of health among older adults with intellectual disabilities:
- 72% live with two or more chronic conditions — a figure that hasn’t changed in over a decade.
- Epilepsy is particularly prevalent, affecting 38% compared with less than 1% in the general population.
- Bone health, especially osteoporosis, is a growing concern — often undiagnosed due to limited access to DEXA scans.
To address this, IDS-TILDA recently piloted a portable bone-scanning device (Ecolite) that can be used in homes or care settings. It’s already endorsed by the Irish Osteoporosis Society and could be life-changing for people with mobility or anxiety issues.
Mental Health, Relationships, and Inclusion
Over time, the study has also tracked progress in relationships, community inclusion, and human rights.
“When we started, just one person in our study was married,” notes Dr. Burke. “Now, we’re seeing more relationships, more friendships, and more involvement in clubs and community life. It’s still not equal to the general population — but the direction is positive.”
Employment and Daily Life
Employment remains one of the toughest challenges. Only 6–10% of participants are in paid work, often part-time. Supportive employers and job coaches make a big difference, but as Dr. Burke notes,
“Without work, people lose income, structure, and connection. We need to find creative ways to make work accessible while protecting essential benefits.”
Physical Activity and Health Promotion
Another key finding is the high level of sedentary behaviour — with about 86% sitting for long periods each day.
“Any movement is good movement,” says Dr. Burke. “Walking, dancing, or community exercise can improve not just physical but also mental health.”
Looking Ahead
IDS-TILDA has now entered Wave 6, with data collection continuing through 2027. Beyond research, the project’s goal is impact — influencing national policy and practice.
The team is already working with the HSE’s National Frailty Programme and the Department of Children, Equality, Disability, Integration and Youth to translate their findings into real-world improvements in healthcare, support, and education.
“We’re not just collecting data,” Dr. Burke concludes. “We’re using it to make change — in policy, in services, and in the everyday lives of people with intellectual disabilities.”
About IDS-TILDA
The Intellectual Disability Supplement to the Irish Longitudinal Study on Aging (IDS-TILDA) is led by Trinity College Dublin. It is the only study of its kind in the world, following adults with intellectual disabilities as they age.
Learn more at www.idstilda.tcd.ie.
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