Over half of carers of people living with dementia struggle to make ends meet, with some even falling into arrears on their mortgage, a new report has revealed.

The report, The Cost of Living While Caring, has been released by the Alzheimer Society of Ireland (ASI). It provides an overview of the financial challenges faced by family carers of people with dementia.

Over 180,000 people in Ireland are, or have been, carers for a family member or partner with dementia, with many more people providing care and support in other ways.

The report focused on 129 family carers in 2022. The average age of carers was 53 and three in four were female. Almost 40% had been caring for between five and nine years, while 44% cared for someone for 140-168 hours per week.

Some 70% were caring for a parent or parent-in-law, while 21% were caring for a partner.

The report found that 55% were struggling to make ends meet, with 12% admitting they have “great difficulty” making ends meet.

Almost 18% of carers said that they were cutting back on household essentials, while 22% had cut back on seeing family and friends.

Furthermore, almost 5% of people had fallen into arrears with mortgage payments, while over 5% had fallen into arrears with utilities.

According to Clodagh Whelan, ASI advocacy manager, family carers “are at the frontline of dementia care in Ireland”.

“They make huge personal sacrifices to ensure their loved one is safe and looked after. What we are hearing from those families is that their situation and stress is made worse by financial concerns. We at The ASI are particularly concerned to learn that families affected by dementia are cutting back on social opportunities for financial reasons because we know dementia can be a lonely and isolating disease,” she commented.

She said that she hopes this report will “amplify the experience of people affected by dementia throughout Ireland”.

“We also publish this report to outline several measures that the government could take to support those families. While the data is from 2022, our engagement with people affected by dementia in 2023 continues to paint a stark and worsening picture of their financial situation,” Ms Whelan noted.

Measures the ASI is calling on the government to implement include:

-Increasing the weekly rate of Carer’s Allowance to support people affected by dementia adequately

-Including Carer’s Allowance as a qualifying payment for Fuel Allowance to support the rising cost of fuel and household bills and increasing the capital disregard for those under 70 to €50,000 in line with the disregard for persons over 70

-Recognising the costs of caring in the allowable deductions for Carer’s Allowance, including medical expenses and fuel.

This report was the result of a collaboration between the ASI and Family Carers Ireland (FCI). According to FCI research manager, Dr Nikki Dunne, the findings clearly show that existing financial supports “are inadequate”. Furthermore, amid the current cost of living crisis, “the situation is sadly becoming bleaker”.

“It is not good enough that many family carers receive payments which fall well short of the established minimum essential standard of living. Around one in eight recipients of Carer’s Allowance receive a reduced rate while thousands of full-time family carers are excluded from the scheme entirely due to their means. The government must urgently reform the Carer's Allowance scheme to address the hardship that so many families are experiencing,” she insisted.

The full report can be viewed here.