Informal carers

Challenges faced and needs to be addressed

Carers are persons who provide care (usually unpaid) to someone with a chronic illness, disability or other long lasting health or care need, outside a professional or formal employment framework. Those who are carers often don’t think of themselves as carers, because they consider it as natural to take care of their child with special needs, their spouse, who has been involved in an accident, their frail, elderly parent or neighbour. That makes it difficult to collect reliable figures about the numbers of carers.

In some countries there is now a question about caring in the census with however some difficulties to retrieve comparable EU data due to different data collection approaches. Another problem with statistics is that often only the adult population is represented in the sample, but we know that very young children can be involved in the care of a sibling or a parent or grandparent with mental health or other chronic health problems. By the same token very old citizens are often excluded or underrepresented in samples, but quite a few old people e.g. aged spouses or neighbours give each other a considerable amount of support. So it is likely that official figures underestimate the real number of carers.

However, in a draft report by the European Foundation for the Improvement of Working and Living Conditions of the European Quality of Life Survey 2011-12 (a representative household survey of people aged 18 and over, to be published in the fall of 2013) there are several interesting data about carers in the 28 EU countries.

In this survey (for short EQLS) it has been found that of the sample of over 35.000.

  • 6% provided care every day,
  • 4% several days a week and
  • 5 % once or twice a week.
  • Another 10% reported to be involved in care less than once a week.

In all, 15% of the respondents provided care at least once or twice a week. 

Caring has, of course, a great impact on the lives of carers, but there are two domains where the consequences are especially acute: income and carers’ health.

Income

Some carers have to leave the labour market for good, others decide to reduce their hours or accept a less demanding job, some can use an early retirement scheme. All these steps mean a reduction in income. Apart from that, carers are usually faced with extra expenses e.g. for travel, extra heating, more laundry, diet foods and the like. It is likely that affluent carers will be more inclined to hire some paid help on the market, so that their burdens are lighter than those of carers in the lower socio-economic strata.

A study on the Cost of Caring 2013 by Carers UK in which more than 4,000 carers were surveyed, most of them with a high care burden, showed that:

  • A third (34%) were unable to afford their utility bills
  • Almost half (45%) were cutting back essentials like food and heating in order to make ends meet
  • 54% were in fuel poverty
  • Most carers had cut back on holidays (78%), leisure activities (74%) or going out with friends and family(74%).
  • 40% were falling into debt as a result of caring.

In some countries, like Ireland and England there are allowances for carers with no or a very low income, in Finland carers can make a contract with their municipality and get a certain amount of money for the work they do. In other countries like Germany, Austria and Italy there are allowances for the cared-for person, but in those cases it is at the discretion of the cared-for person whether they will pay their carer or use the money for other expenses. Whatever is the case, if carers receive some money it is not comparable with what a paid care worker would earn.

The global economic crisis affects carers in more than one way. Like any other citizen they have to deal with more chances to be made redundant, inflation, lower net incomes and reduced allowances for themselves and/or the cared-for person, but because of cutbacks on the formal services access becomes more difficult and when services are no longer available or affordable it is usually the carer who fills that gap, which results in more work for carers and less net income.

Health

Caring can be physically and psychologically very demanding. Quite often carers have not had any training for this “job”, and because they do not know how to do the work properly they may incur problems, for instance they may get back injury trying to get a patient out of bed. And caring can also be quite a mental strain.

Carers often feel they cannot be missed. Who else would do the caring, so they ignore any symptoms and try to avoid seeing their GPor postpone necessary treatment. It is clear that this does not contribute to their good health.

The State of Caring Report 2013 of Carers UK states that 84% of carers said that caring has a negative impact on health.

Carers are as different as the population as a whole and so are the people they care for. On top of that, each relationship between carer and the person they care for is unique. So how can we generalize?

The following text relates to carers with a heavy care load of fully or nearly fully dependent persons e.g. a young child with a severe handicap or a frail elderly person with both physical and cognitive problems.

Accessing relevant information

Medical information: First of all there is info on the health problem of the person they care for. What does this health problem entail? How will the condition develop, what treatment and what medicines are available, who are good doctors, good hospitals? The problem is not that there is not enough information, the problem is that there is too much information. How to find medical information that is clear, reliable and applies to the particular situation at hand?

Information re entitlements and services for patient and carer: The same goes for information concerning social security and health and social care provisions. What is the patient entitled to, how to apply for the relevant provisions? How to use the system in the best way? And in some cases: what does the market offer? What is the quality of the services? Quite often carers do not realise that there are also certain provisions for themselves and because they do not know, they do not apply for them. It is important that carers get this kind or information in an early stage of their caring career. 

Dealing with the health and social care systems

Once the carers have found out what is available and where they should go for the necessary medical and social services they have to access these services. Often this is not easy. They may have to phone in at a given time, they must make appointments and will have to take their relative there. The more specialized the medical and social services get, the more services the carer must get in contact with. The carer has to fit all this into a logical pattern of successive visits and integrating the outcomes into a care scheme that is viable for carer and cared-for person. 

The requirements the services make of the cared-for person and his/her carer are sometimes contradictory or hard to carry out and the carer has to resolve such problems. 

When social care is involved carers may have to deal with problems such as:

  • unreliable or low quality services: care workers don’t show up for unclear reasons and the carer has to do the job,
  • the services send different workers all the time, so that the carer has to explain the situation time and again,
  • or the care worker ignores the carer and does not follow the advice given by the carer, who knows the caree and has her own routine of caregiving and housekeeping, which is disturbed by the paid care worker.

In short, carers are not only the primary source of help and support for the person they care for, they are also case manager, replacement worker and trouble shooter.

Juggling care and other responsibilities

Carers also have a life of their own. There are other family members who need their attention and time, a working carer has to deal with the requirements of the job, there is housekeeping to be done and many people have obligations in their free time as a member of an organisation or group e.g. a sports’ team or as a volunteer.

For non-carers it is often difficult to manage their working and private lives, but for working carers the situation is a lot more demanding. At the same time carers are often taken for granted by policy makers and formal care providers who don’t take into account what consequences their decisions have for carers. Carers are always pressed for time

Because of the crisis ever more tasks are relegated to carers, but carers cannot cope if they do not get support. Unfortunately in most cases the support for carers is largely insufficient or even non-existing. But if carers get overworked there are two patients instead of one.

Although most carers report that they get a great deal of satisfaction out of caring for a loved one, at the same time they feel they do not get the recognition they deserve for the enormous amount of work they do.

In summary it can be said that carers do a great deal of hard work, in fact they are the cornerstone of the entire care system but they are not recognized as an important partner in care. Their contributions are taken for granted and their interests are often ignored. Carers badly need more recognition.

How SmartCare helps addressing these needs

In this project the integration of health and social care is to be achieved to a large extent by the use of ICT.

It is to be expected that most carers will have access to a computer, a tablet or an i-pad, but on the other hand, but we cannot take for granted that everyone has access.

We have seen that the financial situation of many carers is rather precarious, so they cannot be expected to make extra costs for any equipment that may be required, which means that equipment must be made available for those carers who need this.

Secondly carers will have to work with new programmes and they will have to get instruction.

They must feel comfortable with the new tools they get, before they are left alone to use them.

The systems that are used need to be as simple as possible and easy to understand for the user. 

Recognition of the role of carers: In the system, that will be developed, carers should be recognised as one of the partners in care and should have their own place in the new system.

Tailored information: It should be made easier for carers to find the kinds of information they need (as described above) . The information should be tailored to their particular case, so that they need not spend a lot of time searching the web to find the information they want.

Case management by the system: If all providers of health- and social care participate, they should be able to see what each of them does or prescribes. Their actions will be coordinated. The system itself should be able to discover where the gaps are, or where the risks are that something will go wrong. The relevant professional and/or the carer should be warned by the system. The carer will no longer need to act as care manager.

Easier access to health and care professionals: It will be easier for the carer to have a personal contact with the doctors, nurses or care workers. Carers will not have to phone or make an appointment with these professionals when they have questions. If the system works well and if all those who participate do what they are supposed to do (like giving an answer the same day), this will save time for carers and reassure them.

Monitoring the cared-for person: If the ICT allows the carer to see and talk with the cared-for person from a distance this will give the carer a lot more freedom. It allows him/her to follow what the caree is doing without having to be present all the time. The fact that professionals will monitor the caree as well and the knowledge that the carer will be alerted if something happens also contributes to the reassurance of the carer.

Making a broader use of ICT: People who are already working with ICT know that computers can be used for many purposes, but new users may not be aware of other functions than those they will be taught in the context of this project. Nonetheless, computers may be very helpful to give a new dimension to the life, especially of the cared- for persons when they learn how to get in touch with friends and family, make new friends with the help of the computer, join discussion groups, find people with the same hobbies, play games etc. When the cared-for person has more life satisfaction this will make the carer’s task lighter.

Carers can help their carees to use some of these other functions of ICT and the project may help carers to do this by providing them with programmes and ideas to encourage the cared-for person to use these other functions.

A risk: As was mentioned before, carers get many more responsibilities as a result of the cut backs in the formal care system. It is likely, that with the new equipment, carers will be on line most of the time. The risk is, that more and more of the monitoring will also be relegated to carers. If that happens, carers will still be on duty 7x24 and that is precisely one of the main reasons why caring is so burdensome: there is never a pause.