Who cares for the carers?

Caring for a loved one is difficult at the best of times, but reduced services, economic insecurity and an ageing population have made life tougher for people minding elderly or disabled relatives. ROSITA BOLANDlooks at carers' changing role

FAMILY CARERS ARE often invisible, under the radar, even though their numbers are increasing all the time. In the 2006 census, 160,917 citizens identified themselves as carers. The figure for last year’s census, which will be published in November, is expected to be much higher, at about 8 per cent of the adult population, according to a recent Quarterly National Household Survey. Yet despite the growing number of people who care for their parents, spouses, children and other family members, fewer resources have been available to support them since the cuts in public spending.

This year alone the HSE’s National Service Plan, which aims to save €750 million, includes 500,000 fewer hours of home help, a vital service for many carers. Other planned cuts include the closure of up to 900 public nursing-home beds. By the end of this year, 630 private beds from the Fair Deal nursing-home scheme, which helps provide affordable private nursing-home care, will also have been cut.

“A third of carers are older people, so emigration of family members is placing an additional burden on these people. It’s another layer of support going out of the network and makes life harder for them,” says Eamon Timmins of Age Action Ireland.

“We’re also seeing an older generation emigrate this time, along with younger people, which wasn’t the case in the 1980s. The parents of those older children wouldn’t have been expecting them to go now.

“And if you look at our ageing population, and the current numbers of younger people emigrating, then you have to ask the question: who’s going to be stepping in to help care for parents in the future?”

MANY PEOPLE DO NOTwant to contemplate the difficult, emotive questions around health. Who's going to take care of you when you're elderly? What will happen if you have a serious long-term illness long before you're elderly? Can, or will, someone in your family take responsibility for a relative, such as a parent, who can no longer take care of themselves?

It is human nature to hope for the best of health throughout life. Nobody chooses to think of themselves as becoming ill or dependent, or to think of the people closest to them being in that situation either. But people can fall ill at any stage of life, and they do get old.

Keeping people, particularly older people, at home as long as possible and out of institutions is agreed to be the best model of care. It also saves the State a considerable sum of money.

The Carers Association is a countrywide organisation with 16 support centres. In 2009, it published a report, Carers in Ireland: A Statistical and Geographical Overview. Using data from the 2006 census, the association estimated that carers were contributing 3.7 million hours of care a week, worth €2.5 billion a year. It estimates that carers now save the State €4 billion a year.

Along with other advocacy organisations, the Carers Association campaigned for a change to the census question asked of carers: “Do you provide regular unpaid personal help for a friend or family member with a long-term illness, health problem or disability?” qualified by a note: “Include problems which are due to old age. Personal help includes help with basic tasks such as feeding or dressing.” The question was asked only of people over 15.

Last year the question was also asked of under-15s. In November, when the CSO releases its carers data, the number of young carers will become known for the first time.

TO RECEIVE HOME HELP, a person being cared for must be over 65 and have a level of dependency. "The most common problems carers have is that many services are aimed at under 18s and over 65s," says Catherine Cox of the Carers Association. "In between those ages, the services are very inconsistent."

The maximum home help a carer can usually expect to receive is one hour five days a week. The help does not officially include nursing or medical aid; it is meant only to aid with shopping, laundry and light housework, although many home helps unofficially assist with tasks showering, dressing, feeding and other tasks.

In a statement to The Irish Times, the HSE said: “There will be reductions of 4.5 per cent nationally in the level of home help hours provided, but this reduction will be compensated by a more rigorous approach to the allocation of these supports to ensure that the people most in need receive them by deprioritising non-personal care.”

The main payment for family carers is the carers’ allowance – €204 a week if the carer is under 66 and €239 if over. According to Cox, only a third of full-time carers receive this allowance, as it is means-tested.

The reduction in home-help hours is just one additional challenge facing family carers. The recession and the consequent number of people leaving the country to look for work elsewhere have had a very specific knock-on effect for some families.

The CSO published a Quarterly National Household Survey module on carers in 2010. It found that four in 10 carers look after a parent or parent-in-law; that four in 10 were the sole carer of the person they looked after; and that half of all carers cared for someone in the same household.

The survey also looked at the impact of caring on the life of the carer, by using a “strain index” score. Two thirds of those surveyed reported that their own lives had been affected by their responsibilities. Disturbed sleep, coping with distressing behaviour, financial strain, and an adverse effect on their own mental and physical health were among the problems carers reported as a result of caring for a family member. More than a third of those surveyed admitted “feeling completely overwhelmed by their caring responsibilities”.

These are some of their stories.

The numbers: How many carers are there, and how much work do they do?

565,393Number of people in the Republic over the age of 65 according to the 2006 census

50,000The approximate number of family carers looking after someone with at least one symptom of dementia, an umbrella term for various conditions that damage brain cells, including Alzheimer's

3.7mThe number of hours a week that carers contribute, according to a Carers Association estimate based on the 2006 census.

€2.5bnThe annual value to the State of that care in 2006

467,926Number of people in the Republic over the age of 65 according to last year's census

160,917Number of people over the age of 15 who identified themselves as carers – that's 4.8 per cent of the population – in the 2006 census

60,703The number of carers in the 2006 census – or 38 per cent – who were male

100,214The number of carers in the 2006 census – or 62 per cent – who were female

270,000The number of people the Carers Association estimates will have identified themselves as carers in last year's census. The figure is due to be published in November; part of the rise will be because this new statistic will include, for the first time, people under 15 who identified themselves as carers