72% of family carers have never received respite - State of Caring 2024 Survey reveals

DFI Member Organisation Family Carers Ireland today unveiled its ‘State of Caring 2024’ Survey, revealing an alarming and deteriorating situation for family carers across the country. The extensive survey, with responses from 2,127 family carers, highlights the crushing impact of systemic neglect, financial strain and a deepening housing crisis.

Key findings include:

• 76% of carers report severe or moderate loneliness.
• 74% of family carers surveyed said that the people they support do not receive sufficient formal support.
• 72% have never received respite.
• 69% find it difficult to make ends meet (with 29% of those struggling financially cutting back on essentials such as food and heat).
• 49% have paid privately for products or services that should be publicly provided to support their caring role.
• 34% said their accommodation is not suitable to meet the needs of the person they care for.
• 23% missed at least one mortgage or rent payment over the past year, with 17% of mortgage holders missing a payment.

Family carers continue to face significant challenges in securing adequate support, with 74% reporting insufficient formal support for those they care for. The percentage surveyed who have never accessed respite care has risen from 66% in 2022 to 72% in 2024, highlighting ongoing inadequacies and gaps in the support system. This worrying increase underscores the health system's failure to meet family carers' basic needs and emphasises the urgent need for comprehensive and effective reforms to provide adequate support and respite services.

The survey uncovers the harsh realities family carers face in securing stable and appropriate housing necessary for effective caring, with almost 1 in 5 (17%) of mortgage holders having missed a mortgage payment in the past year. Over one-third of those in private rental (35%) and those in local authority housing (32%) have missed a payment in the past year, adding a layer of uncertainty and stress.

One carer shared, “We are in constant fear of an eviction notice coming through the door. That alone, has a negative impact on our outlook. Then with the security issues, no maintenance being carried out on the house, inadequate insulation. It all has a negative impact on daily life. Our landlord knows we won’t question anything as we have nowhere else to go.”

Moreover, over a third of family carers reside in homes that are not suitably adapted, lacking essential accessibility features such as ramps and grab bars. This situation is exacerbated by the inadequacy of the Housing Adaptation Grant, which has not been increased in over a decade, forcing many to rely on family and friends, personal loans, or community help to make necessary modifications.

The financial burdens extend beyond housing, with many family carers experiencing reduced earning capacities and heightened economic pressures that challenge their ability to provide care. This financial strain is evident as more than a third report household incomes below €30,000 annually, significantly less than the national median.

Family carers who are struggling financially often must make difficult decisions and cut back on spending. Among the 69% of carers experiencing financial distress, 29% are cutting back on essentials such as food and heat and 16% have struggled to pay utility bills. These figures highlight that significant numbers of carers are facing fuel and food poverty, with some reporting having to rely on food banks and charities like St Vincent de Paul to get by.

Catherine Cox, Head of Communications and Policy at Family Carers Ireland, commented on the findings, saying, "This survey reveals a harrowing truth - family carers are being pushed to the brink. Despite promises of reform, they have been abandoned in a broken system. The report paints a bleak reality, echoing the persistent struggles highlighted for many years and emphasising the urgent need for a transformative approach to supporting family carers and providing them with the recognition, resources and respect they deserve.

"We are calling for immediate action to relieve the burdens experienced by family carers across Ireland. Urgent measures such as the abolition of the means test for Carer’s Allowance, appropriately benchmarking the payment and ensuring it is not taxed; eliminating the postcode lottery of supports and services that exists through the full implementation of the Carers’ Guarantee promised in the Programme for Government; and increasing the Housing Adaptation Grant and ensuring fair rent practices are crucial to easing the challenges faced by carers. Additionally, incorporating universal design principles in housing, along with vastly improved access to respite care and the establishment of a statutory home support scheme, are vital steps to ensuring the sustainability of care in the home."

Click here to read the survey in full. 

ENDS