One of the great quiet successes of the last fifty years in Ireland is that people with an intellectual disability are living far longer than anyone once expected. A child born with Down syndrome in the 1940s could expect to live to around twelve. Today, that same child can reasonably expect to reach their sixties. The shift has happened faster than our health and social care systems have adapted to it.
The result is a generation ageing in circumstances nobody planned for, often supported by parents in their seventies and eighties. If you are one of those parents, a sibling, a support worker or a health professional, here is what changes with age, what gets missed, and what you can put in place now.
TL;DR
- Life expectancy has risen dramatically, but services have been slower to adapt to an ageing population.
- Ireland hosts IDS-TILDA at Trinity College Dublin, the only study in the world tracking ageing in people with an intellectual disability alongside a general population study.
- Age-related conditions appear earlier and are diagnosed later, largely because of diagnostic overshadowing, where symptoms get blamed on the disability itself.
- People with Down syndrome carry a very high genetic risk of Alzheimer’s disease, often presenting in their fifties as behavioural change rather than memory loss.
- The Assisted Decision-Making (Capacity) Act 2015 replaced wardship with supported decision-making.
- Future planning, done early and written down, is the most useful thing an ageing carer can do.
What Irish research shows
Ireland’s National Intellectual Disability Database, maintained by the Health Research Board, registers in the region of 28,000 people, a growing proportion of them over 40. That may not sound old, but in this context it matters, because ageing arrives earlier. Osteoporosis, frailty and dementia can show up a decade or more sooner than in the general population.
We know this in unusual detail because of IDS-TILDA, the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing, based in Trinity College Dublin’s School of Nursing and Midwifery. It has followed people with an intellectual disability aged 40 and over since 2008, and because it runs alongside the main TILDA study, researchers can compare directly against the general older population. No other country has this.
The findings are consistent and uncomfortable. Participants carry multiple chronic conditions at rates well above the general population of the same age. Polypharmacy is widespread, with a substantial share taking five or more regular medications and a significant minority on ten or more. Epilepsy, constipation, thyroid disorders, osteoporosis and mental health difficulties all run high. Uptake of national cancer screening runs low.
Diagnostic overshadowing
If you take one clinical idea from this article, make it this one. Diagnostic overshadowing is what happens when a new symptom is attributed to a person’s intellectual disability instead of investigated as a health problem in its own right. A man in his fifties becomes withdrawn and stops joining activities, and it is recorded as a behavioural issue. It is depression, an underactive thyroid, or pain from an undiagnosed hip. A woman refuses meals and is called fussy. She has dental pain or difficulty swallowing.
The practical defence is documentation. Keep a written baseline of how the person normally walks, sleeps, eats and communicates. When you can tell a GP “six months ago she was doing X and now she is doing Y”, you have turned a vague worry into clinical information.
Dementia, and why Down syndrome is different
The gene producing amyloid precursor protein sits on chromosome 21. People with Down syndrome have three copies of that chromosome and so produce more of the protein implicated in Alzheimer’s disease across their whole lives. The result is one of the highest genetic risks of Alzheimer’s known to medicine, with symptoms commonly emerging from the early fifties onward.
It rarely looks like the dementia families expect. Early signs are more often changes in personality, mood, motivation, planning ability, continence or seizure activity than classic memory complaints, and families frequently report that something was “off” for two or three years before anyone named it. Ireland now has a dedicated national memory service for adults with an intellectual disability, based at Tallaght University Hospital. Ask your GP or disability service about that pathway rather than assuming a general memory clinic is the right door, and push for a baseline assessment while the person is well.
Where people live, and who decides
The HSE’s 2011 strategy Time to Move On from Congregated Settings committed to moving people out of institutions into ordinary homes in ordinary communities, and progress has been real but slower than promised. Designated centres are inspected by HIQA and the reports are published openly on hiqa.ie, so read them if you are assessing a service.
The bigger change is legal. The Assisted Decision-Making (Capacity) Act 2015, commenced in April 2023, abolished wardship and replaced the blunt question of whether someone “has capacity” with a decision-specific test supported by three tiers of arrangement: decision-making assistant, co-decision-maker and decision-making representative. The standard is now the person’s own will and preferences, not what someone else judges to be their best interests. The Decision Support Service oversees this and publishes accessible guidance. Families who decided informally for decades often find the shift uncomfortable, but understanding it early avoids conflict later on.
The ageing carer question
Thousands of adults with an intellectual disability in Ireland live at home with parents aged 70 and over, and many families have never had a formal conversation about what happens next, because the conversation is unbearable. Avoiding it has a cost: when the plan is unspoken, the move happens in crisis, usually triggered by a carer’s illness or death, and the person is placed wherever a bed exists rather than where they would have chosen. Better to write it down while there is time.
- A personal profile. Communication style, routines, likes, triggers, how they show pain, what soothes them. Nobody else knows this.
- A medical summary. Diagnoses, medications and doses, allergies, treating clinicians, past adverse reactions.
- A housing preference. What kind of home, in what area, near which people, given in writing to the disability service.
- Legal advice. Talk to a solicitor about your will and how an inheritance may interact with Disability Allowance means testing. Discretionary trusts are common here and carry specific tax treatment.
- An emergency plan. A named person who knows the routine and can step in for a fortnight without notice.
Practical health steps
Ireland has no national annual health check programme for adults with an intellectual disability of the kind operating in the UK, so prompting reviews falls to families and services. Ask your GP for a structured annual review anyway, and bring a written list. Check the person is genuinely on the invitation lists for BreastCheck, CervicalCheck and BowelScreen, and ask about accessible appointments and easy-read information, which the programmes do provide. Book a free medicines review with the community pharmacist. Prioritise dental care, eye tests, hearing checks and bone health, all commonly neglected and all with an outsized effect on independence and behaviour.
For support, Inclusion Ireland is the national advocacy organisation for people with an intellectual disability and their families. Down Syndrome Ireland runs local branches and specific supports around ageing and dementia. The National Advocacy Service for People with Disabilities offers free, independent advocacy, and Family Carers Ireland runs a freephone Careline.
At Críonna Health we cover ageing across the full range of circumstances, including the ones that get least attention. The people in this article have spent their lives being underestimated. Ageing well is no smaller an ambition for them, but it does take earlier planning, sharper advocacy, and someone willing to ask the awkward question before the crisis arrives.
This article is general information, not individual medical, legal or financial advice. Please speak to your GP, solicitor or disability service about your own circumstances.
📷 Photo by Samuell Morgenstern on Unsplash
