Young people do not belong in nursing homes

Thousands of people who live with early onset Parkinson's are at risk of being institutionalised, writes Fiona Staunton 

Being diagnosed with a neurodegenerative disease should not mean your human rights are stripped away. File picture

One man with early onset Parkinson’s is climbing the Himalayas active, empowered and supported. 

Another is trapped in a care home among residents twice his age, paying €3,000 a month while his savings and spirit drain away. He can’t even go for a walk out of the grounds without permission. 

I’ve met these men — both under 65 and both with lives worth living. The man living in a nursing home is not merely another wasted life, he is a person too.

Prime Time Investigates exposed what we’ve known for years: the shameful institutionalisation of people under 65, leading to rapid physical and mental decline. Today, 1,227 remain in nursing homes. 

In 2025, the HSE asked for €8.5 million to relocate 40 people — sounds like progress, right? Until you realise only €4.8 million was allocated, enough to move just 24 people. 

Over four years, 104 people have been moved out of nursing homes, while 32 more are added every month (Wasted Lives Update, 2024). The maths doesn’t add up — and neither does the morality.

I’ve lived with early onset Parkinson’s for a decade — a condition affecting 10–20% of people with Parkinson’s, with members of our organisation symptomatic as young as 20 years old. 

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With 18,000 living with Parkinson’s in Ireland, as many as 3,600 people aged 18 to 55 are at risk of being sent to a nursing home should they experience rapid progression, or symptoms become unmanageable alone. This is not to mention the countless others living with neurodegenerative conditions.

I’ve met people living this nightmare — like a man in his 30s with Cerebral Palsy, placed in a nursing home alongside residents his parents’ age. With both parents in long-term dementia care and no community supports available, he was sent there. 

His fear? That he might never get out.

And what about the families? Under the Fair Deal scheme, 80% of a person’s assessable income and 7.5% of their assets per annum, are paid towards nursing home care. 

In the case of early onset conditions what happens to the mortgage, the family left behind, the children still in school? The financial devastation affects everyone.

I’m lucky to have a supportive husband, four amazing children, family and friends. I’m doing my best to live well. But many I’ve met aren’t so fortunate. 

They’re institutionalised, cut off from vital therapies like physio, exercise, and neurology that could slow disease progression. Their savings vanish, they’re isolated from peers, and their mental and physical health decline as their independence slips away, day by day.

This practice is not new. Nor is it an accident. The Wasted Lives report in 2021, laid bare the systemic failings, and since this, the Government repeated promises to end the institutionalisation of young people in nursing homes. 

What do these promises mean to the young man in his 30s with Cerebral Palsy? Nothing. His life hasn’t changed. The government has, but his reality has not.

Slow erosion of dignity

Having just retired from my role as a dementia adviser in Clare, I have seen how the system fails people. I’ve seen the heartbreak, the isolation, and the slow erosion of dignity. 

I’ve also seen community workers and healthcare staff stretch every resource and contact to find funding and support often forcing them to act first and ask forgiveness later in the hopes of a better outcome.

It appears that the €4.8 million allocation is a one-off fund, as there is no indication that funding has been committed for the many years that would be required to solve this crisis. That is not a strategy. It is an insult. Especially when the Government claims its commitment to ending this practice. 

What happens next year? What happens to the hundreds still living in no man’s land.

Fiona Staunton: 'Having just retired from my role as a dementia adviser in Clare, I have seen how the system fails people. I’ve seen the heartbreak, the isolation, and the slow erosion of dignity.'

We need real, long-term investment in community supports, as promised in Sláintecare. Clear exit pathways must be created for those already institutionalised and we need transparent, updated data on how many of these people are wrongly placed in nursing homes — including those stuck in hospital beds waiting for nursing home spots.

We need full, informed consent — because I can tell you now, no young person willingly chooses this as a long-term path.

This shameful practice must end. Being diagnosed with a neurodegenerative disease should not mean your human rights are stripped away. We are not statistics. We are people with hopes, with families, friends, and with futures. 

One of the myriad symptoms of Parkinson’s is a softening — and even loss — of one’s voice. However, on this issue, we will continue to shout until our voices are heard, until there are no more wasted lives.

• Fiona Staunton is a Board Member, EOPD Ireland Dementia Adviser (retired), The Alzheimer Society of Ireland Person living with Early Onset Parkinson’s Disease Parkinson’s Advocate