Who’s caring for the carers?

ALMOST half of Clare family carers interviewed for a new study reported significant health conditions, compromising their ability to provide long-term care for a dependant.

This is just one of the startling findings to emerge from a quantitative survey of the mobility patterns and social contacts of almost 140 family carers in Clare.
Commissioned by Caring for Carers Ireland, which is based in Ennis, the study found stress and failing health are commonplace among carers. It warned that many carers do not find time to look after their own health on a preventative basis or attend a doctor when feeling unwell.
Detailed one-to-one interviews were carried out with 17 family carers with an average age of 75 years, approximately equal to the average age of the general sample surveyed.
Eleven of these carers look after a husband or male partner, two care for their wives and four for a parent. Fourteen are female and three are male.
Just under half of those interviewed had significant diagnosed health conditions that compromise their capacity to care; conditions such as Parkinson’s disease, coeliac, cardiac conditions, poor eyesight and diabetes.
Almost a quarter of them reported that they are very stressed or “down”, “depressed” or “demoralised”.
One of the most striking aspects of the daily lives of family carers is the extent to which they feel isolated, stressed and lonely. Focus group participants outlined the demanding and time-consuming requirements of their caring function, the way it disconnects them from previous social networks and the lack of ongoing respite opportunities.
The study identified, “71% of family carers of older people ranked their social life as either non-existent, very little, or confined to attending Caring for Carers Group meetings”.
Of the 17 family carers interviewed in one group, six cannot leave the person they care for alone at any time and five can only leave for a maximum of one hour. Half of the group said they either have no friends or just one friend.
Less than half leave their home daily, those who do either go to work or to the local shop as a way to get out and experience some level of social contact. A quarter of those interviewed only get out of the home weekly or less. For most carers, hobbies are a thing of the past.
Carers expressed the feeling of being trapped in their own homes and can only, with difficulty, get out to mass. “Going to weddings and funerals is impossible now.”
Others stated, “You get very cut off especially if you can’t drive or can’t leave the person you are caring for”  I am not asked to go out by my friends anymore”. 
Funded by Clare Local Development Company, this exploratory study by independent local researcher, Joe Saunders, was conducted to determine the level of social contact and the extent of isolation experienced by older people and family carers and to examine the use of technology and the factors affecting take-up amongst this group.
The overall group surveyed included 50 people over 65 ,drawn from seven spatially representative electoral divisions. In addition, individual interviews were held with 17 family carers and focus groups were held across the county involving 78 family carers. These partially overlap with the individual interviews. In total, talmost 140 people participated in the study, either through the survey, individual interviews or focus groups.
The general study found 22% of carers only see family on a monthly or less frequent while 28% see two or less non-family contacts during a month. Up to 30% get no visitor to their home in a typical week.
Take-up rates for mobile phone, computer and broadband technologies remain low for over 65s. Only 58% use a mobile phone and 24% use a computer. Just 20% of those with broadband availability subscribe to the service. There is a very low awareness of monitoring technologies with the exception of panic buttons.
Speaking at the official launch, Caring for Caring Ireland chief executive officer, Mary McMahon said carers provided the backbone of the health and social care service.
She said they play a pivotal role in the wellbeing of children and adults with severe disabilities, frail older people and people who are terminally ill.
Ms McMahon hopes the recent carers’ census will help policy makers understand the undervalued contribution of full-time carers, who work more than three times longer than the average employed worker.
Mayor of Clare, Councillor Christy Curtin said he is aware of the vital role played by the West Clare Family Resource Centre, which provides meals and a wide range of services to 60 elderly people, which is part of the “real Ireland”.
“Caring for the elderly is the most noble profession. While resources are limited, we must ensure that carers are supported and that cutbacks don’t affect marginalised groups, such as carers,” he said.
Ger Kennedy of Clare Local Development Company said this project is a good example of what could be achieved by accessing money through the LEADER Rural Development Programme and invited submissions about similar projects.
CFC chairperson, Eilish Smith cited a case of a couple who lost all their social skills to communicate with people, having cared for their disabled daughter for 39 years.
Joe Sanders said it was a “privilege and a humbling experience” to hear real-life accounts of the daily battles experienced by carers as part of his research work for the project.
Mr Sanders stressed the next challenge is to ensure the report doesn’t gather dust on a shelf and hopes it will be used to bring about improvements for carers.
Innovation and programme manager, Brigid Barron provided a comprehensive report of the initiatives introduced and supported by the organisation, including the friendly call service, home library service, Telecare, senior alert scheme and social care networks to help combat the sense of isolation being experienced by older people and family carers.
Ms Barron pledged the group would ensure this report is not just left on a shelf.
Eamonn O’Shea from NUIG stressed it is important that communities are organised to support family carers considering cutbacks in health and social expenditure will get worse over the coming years.