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MORE THAN 1,200 people under the age of 65 in Ireland are living in nursing homes designed for much older people, leaving them frustrated and calling for alternatives.
In many cases, these people are in nursing homes due to a lack of availability of more appropriate housing and care services.
One report identified that many people in this situation are dissatisfied with their care and living conditions – but progress has been slow to help individuals who wish to move to alternative housing arrangements.
One man has described to The Journal his despair and frustration at having no choice other than to live in a nursing home, despite being much younger than other residents and having different support needs.
John* is in his 50s and has Friedreich’s Ataxia, a progressive condition that causes damage to the nervous system. John is a university graduate but has high physical support needs and cannot carry out tasks like writing or using the bathroom alone.
For most of his adult life, John’s carer was his mother, whom he lived with. Speaking to The Journal, he described his mother as his “hero” and said her work was “Trojan” – she was fastidious in her care for John, even as her own health started to decline.
His mother’s workload was “constantly increasing”, John said, due to poor availability of supports.
John’s mother died in 2023. After her death, John was admitted to a nursing home.
He said that he was led to believe his stay in the nursing home would only be temporary, given that his age and support needs were very different from most of the nursing home’s residents, but that he was later pushed to sign a contract to stay.
John was later moved to another nursing home where he said he experienced difficult conditions and insufficient support. He was told that he was going to be moved to another nursing home in a different county, which would be further away from his family and his mother’s grave – or that his only other choice was that an ambulance would be called to take him to an Emergency Department and that he would then be discharged to any part of the country based on bed availability.
John was also told that he needed to agree to sign up to the Fair Deal scheme – the HSE scheme that assesses an individual’s income and assets and calculates an amount for them to pay towards nursing home care – or he would be sent to a hospital. John said he felt pressured into signing up to the scheme, and that he has also been told that 80% of his Disability Allowance will be used each week towards his care.
Living in a nursing home is causing John significant distress, he explained.
His needs are different from those of most of the other residents. He feels he does not receive the type of supports that he needs from staff and does not have access to appropriate activities — nor is there anything there that brings him joy and fulfilment.
“I don’t want to think of myself still being here in five years,” John said.
In Ireland, the situation faced by John and many other physically disabled adults in his position is that there a lack of availability of residences that cater to physical disabilities, as opposed to nursing homes or facilities for people with intellectual disabilities.
As of January 2025, there were 1,249 people under the age of 65 in nursing homes in Ireland.
Most are between the age of 50 and 64, with some – around 14% – under the age of 50.
In 2021, an Ombudsman report called Wasted Lives investigated the conditions experienced by people living in nursing homes under the age of 65.
The report found that many people in this situation are dealing with financial challenges on a daily basis and many are paying for nursing home care even if it is not their preference to continue living there.
The Ombudsman said this cohort of people do not always have a meaningful say in decisions that profoundly affect their lives.
Additionally, their quality of life can be impacted by being placed in a nursing home designed for people who are older than them with a different set of needs – and under the care of staff who have been trained for different needs to their own.
The report said social programmes and recreational activities in nursing homes are often not focused on the needs and preferences of younger residents and that younger people in nursing homes often feel lonely and have little opportunity to leave the nursing home during the day.
The Ombudsman made a series of recommendations to the government and the HSE, including that ring-fenced budgets should be allocated to improving the quality of life of under-65s in nursing homes and to support them entering more appropriate living arrangements.
The report also recommended that the HSE and Department of Health draw up strict procedural guidelines for processing Fair Deal applications to ensure that the individuals involved are giving fully informed consent.
Figures shared by the HSE last year show there has been an average of 32 individuals under the age of 65 entering a nursing home every month.
In a statement to The Journal, the HSE said that it has been working to address the findings of the Wasted Lives report, which included budgets of €3 million and €13.5 million in 2021 and 2022 respectively to support under-65s in nursing homes to move to homes of their choosing in the community.
Since 2021, 102 people have been supported to move to homes of their choosing in the community where this is their wish, the HSE said.
It added: “Plans are at an advanced stage to support 18 people to move in the short to medium term… In addition, a further 154 people who need to continue in their nursing home placement have benefitted from Enhanced Quality of Life Supports (EQLS) funded by the U65 programme.”
“These supports include personal devices, transport, social care, vocational, therapeutic supports and personal assistant hours, which aims to improve a person’s quality of daily life while in a nursing home,” the HSE said.
“The reasons for someone’s continued placement in a nursing home can be due to their assessed need, a lack of suitable alternative placement in the community, or for many it is due to their current personal will and preference,” it said.
“Disability services recognise that personal will and preference are changeable and that there needs to be planned engagements with people to better understand their reasons why they may wish to stay.”
The Department of Disability, led by Fianna Fáil Minister Norma Foley, is responsible for disability care in Ireland.
In a statement to The Journal, a spokesperson for the department said that a nursing home “can be an appropriate care option where the person concerned has a clinically assessed complex medical and social care requirement that cannot be supported in the person’s home”.
The department spokesperson acknowledged that “for some people under the age of 65, nursing homes are not an appropriate placement and alternative, more sustainable supported living solutions are needed to give them greater independence and choice in their daily lives”.
They stated that demand for disability residential placements in Ireland is high and “exceeds that which can be currently provided”.
“Under 65s is but one group of individuals seeking residential places (where both the housing and support elements are provided). The availability of appropriate housing as well as challenges in recruiting staff have been cited as barriers to successful transitions,” the spokesperson said.
“Measures to prevent young persons from entering nursing homes continue to be supported through a range of services including respite, home support and personal assistance services.”
According to Disabled Women Ireland, a disability rights advocacy organisation, thousands of disabled people in Ireland are living in unsuitable accommodation, whether that be be in institutions, in homes not adapted to their needs, or with families when they would rather live independently.
“Too many disabled people are living in places that they shouldn’t be, places they haven’t chosen themselves,” a spokesperson for the organisation said to The Journal.
They said that a lack of accessible housing, sky-high housing costs coupled with the cost of making homes accessible, and barriers to accessing support for living independently all create an “incredibly challenging and isolating situation for disabled people”.
They said that public health policies like the HSE’s Time to Move On from Congregated Settings are a start but are “too slow a change for disabled people up and down the country who are losing years and decades of their lives”.
“The government really needs to step up its commitments so that more disabled people don’t live and die within the four walls of an institution with no home to call their own.”
For John, the lack of more appropriate options other than nursing homes for physically disabled adults under 65 is a serious failure on the part of Ireland’s health service.
“I worry about what will happen to me if I lose the ability to speak or have an accident,” John said.
“I don’t want to be here forever,” he said.
“How many other people are like me across the country? How can it be justified?”
*Name changed to protect privacy
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