Half of carers for people with dementia struggling to make ends meet, study finds

More than half of carers for people with dementia are struggling to make ends meet and 12 per cent are having “great difficulty”, a study published on Tuesday finds.

Conducted by the Alzheimer’s Society of Ireland (ASI), the report highlights the stark impact of the cost-of-living crisis on carers, the vast majority of whom are women.

The study draws on survey data gathered online by the Family Carers of Ireland last year, focusing on extracted anonymised data relating to 129 carers who specifically care for people with dementia.

The average age of respondents was 53 and most were long-term carers for their parents or parents-in-law, or spouse or partner. Almost half (44 per cent) said they spent between 140 and 168 hours per week doing care work. Just over half (52.7 per cent) were in receipt of carer’s allowance and of those who disclosed their income, almost one in three earned €20,000 or less.

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A total of 55 per cent were “having difficulty making ends meet” and 12 per cent said they were having “great difficulty making ends meet”.

[ More than two-thirds of family carers experiencing financial distress, survey finds ]

Almost one-fifth (17.8 per cent) were cutting back on household essentials, 22.5 per cent had to cut back on seeing friends and family, and in some cases carers had fallen into rent or mortgage payment arrears.

“The wellbeing of people who care for and support loved ones living with dementia is at serious risk of deteriorating as Ireland navigates the current cost-of-living crisis,” the report says. “An already stressful and complex situation with significant health risks is being exacerbated by financial strain.

“This data paints a stark picture of carers (generally women) who are struggling financially, limited in their social interactions with friends and family, and not feeling valued for the work that they do in society.”

It calls for the carer’s allowance to be included as a qualifying payment for fuel allowance in Budget 2024, and an increase in the capital disregard for those under 70 to €50,000 “in line with the disregard for people aged over 70″.

Clodagh Whelan, advocacy manager at the Alzhiemer’s society, said family carers for people living with dementia are at the frontline of dementia care in Ireland, providing care which is independently valued at more than €800 million per year.

“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,” she said.

The Alzheimer’s Society of Ireland, she added, is “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 said publishing the report was intended “to amplify the experience of people affected by dementia throughout Ireland, to say ‘We hear you, and we know you are struggling’”.

[ Hope on the horizon for families of thousands of Alzheimer’s patients ]

“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,” she added.

The Alzheimer’s Society of Ireland also called for an increase in the weekly rate of the carer’s allowance to support people affected by dementia adequately.

“The once-off payments allocated in Budget 2023 are very welcome, but the weekly rate remains insufficient to meet the needs of struggling carers. The €200 cost-of-living lump sum due to be paid to long-term social welfare recipients in April 2023 should include carers who receive the annual carer’s support grant as a stand-alone payment, as was the case with the cost-of-living payments in November 2022,” the report adds.

“There are over 64,000 people living with dementia in Ireland, which is expected to double to 150,000 by 2045,” notes the report. “Over 180,000 people in Ireland are or have been carers for a family member or partner with dementia, with many more providing support and care in other ways.”

Dr Laura O’Philbin, research and policy manager at the society, said family carers experienced “significant financial challenges” as they contended with the cost of living crisis.

Last month, Independent TD Marian Harkin proposed reform of the carer’s allowance system in a private member’s motion in the Dáil. She said the value to the State of all carers, not just dementia carers, was estimated to be €20 billion annually.

In response, Minister for Social Protection Heather Humphreys said the main income supports provided by the department include carer’s allowance, carer’s benefit, domiciliary care allowance and the carer’s support grant.

“Spending on these payments in 2023 is expected to be in the region of €1.6 billion,” she said.

Ms Humphreys added that while she had already made “a number of improvements within the social welfare system to enhance the supports available for our carers”, continuing to advocate for carers would be “a priority for me once again in this year’s budget”.

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