The demand for caregiving is growing, the result of which is that care is increasingly being delivered by a mix of formal and informal providers. One of Job van Exel’s topics of enquiry is: who, then, bears primary responsibility for caregiving? "But we shouldn’t make a mountain out of a molehill."
TEXT: Yasmina Aboutaleb
Once when he was still a young and unsuspecting researcher, Job van Exel included his telephone number on a questionnaire he was sending out to a sample of a few hundred informal carers. He found himself fielding calls from full-time carers for the next three weeks. Some were calling with simple queries about the questionnaire, or to say that it was nice to have someone finally pay attention to carers. But some were calling in desperation, and were on the phone for up to an hour and a half telling him about how they’d been referred from one agency to the next or about the abuse they’d suffered as carers.
The young researcher quickly deduced that there was a much bigger story behind the ones he was hearing. The accounts also motivated him to do something to improve the visibility of the four million informal carers in the Netherlands. Now a professor at the Erasmus School of Health Policy & Management, Van Exel remains just as devoted to this objective.
Do you have any personal experience of caregiving?
"My sister has Down's syndrome, so my parents have been informal carers since I was a boy. Thus I’ve had a close familiarity with caregiving for quite a while. I helped, too, with babysitting and other chores, though I wouldn't really call that caregiving."
When may someone be considered a caregiver?
"According to the Netherlands Institute for Social Research (SCP), an informal carer is anyone who provides informal care for at least eight hours a week for three months. Informal carers often provide unpaid care to a friend or family member because that person is old or sick and needs help. This caring relationship arises from a social relationship, so the carer is always someone you already know. The social relationship makes it different from volunteering, because that’s something we usually do for strangers. Most people don’t immediately consider themselves carers, especially if what they’re doing doesn’t feel especially demanding. People will often say they’re just helping their brother or mum. They see it as coming with the territory, and the fact that what they’re doing has a name often isn’t something they’re aware of. The term 'informal care' is policy language."
How does providing informal care affect people?
"Many informal carers spend up to twenty hours a week providing care, with some doing so round the clock. As you can imagine, if your charge has advanced dementia, you need to be on hand 24/7; you can't leave them alone for a minute. Or if your son has respiratory problems, you have to be there to make sure he doesn’t suffocate. So it’s not surprising that some carers feel that this is a full-time job. Fortunately, they’re in the minority. When you delve into people’s experiences of providing care, you find it comprises a mix of positives and negatives. Regarding the latter, people often find the experience stressful and physically demanding, and it can have a major psychological effect. You find yourself suddenly having to do all sorts of things for someone close to you that you never did before, like giving your mother a bath, for instance. That’s psychological demanding. Living with someone who’s sick on its own affects us negatively. These negative aspects often overshadow the positives, with the stressful elements claiming prominence. But many caregivers also say they’re happy to do what they do, because they too would want someone close caring for them if they needed it. Some derive satisfaction from being caregivers; it gives them a sense of purpose. So it's a mix of pros and cons. And the weighting of the various experiences changes over time. It takes a while to get used to the situation when it's new, so it all feels negative; but you slowly begin to see the positives. That said, if the situation goes on for long, and the prospects of the recipient’s recovery look slim, the outlook can tilt back to negative."
"When you ask informal carers how they’d feel to be relieved of the burden of caring, almost half say they’d be unhappier than they are now."
Does informal care have a bad image?
"In informal care surveys, we often ask people to grade their level of happiness. Then we ask: suppose you could have someone of your choosing relieve you of all of your informal care tasks; how happy do you think you’d be then? About a third to half say they’d be unhappier. This is why we shouldn’t make a mountain out of a molehill, but rather try to emphasize the positives so that more people are willing to provide care. And care-related policy must aim to support people, especially those providing long-term care, to help them stay the course. That was part of our reason to give informal care more visibility. The effect of caregiving by people outside the formal healthcare sector never used to be considered, but that has changed, particularly as an increasing number of people are doing it. Our ageing population is resulting in more and more people needing care, while the number of people who can provide care is falling. And the latter are also the ones that we rely on to earn an income. The circumstances thus create a dual responsibility for the younger demographic."
What’s the current focus of your research on informal care?
"We and the SCP have done quite a lot of research on informal care for specific debilitating conditions, and on informal care in general. But there remain a number of interesting issues to explore. Given the changing composition of the population, it would be interesting to study informal care from a cultural perspective. Are their differences in the way people providing informal care see themselves depending on their cultural background? Does the motivation to provide care differ? We know too little about this. Research has shown, for example, that Surinamese and Moroccan carers are less likely to consider what they do unusual. There are cultural components on both the giving and receiving end of the informal care equation. Would you like someone to care for you? Would you like to provide care? Are you part of a network of carers or will one person be primarily responsible? Having a parent come live with you isn’t common in the Netherlands, whereas it is in many other countries. The entire social network is different. And that determines whether informal care will or won’t be a problem, and whether it is likely to be voluntary. We don’t have a specific policy on this at the moment.
The demand for caregiving is growing, the result of which is that care is increasingly being delivered by a mix of formal and informal providers. Who, then, bears primary responsibility for caregiving? A home care assistant or district nurse is often responsible for monitoring the condition of the person receiving care. If others at the same address also perform this task, coordination of the role may prove somewhat difficult.
Another problem is that of contracting regions, areas where young people are leaving while a relatively old population remains, resulting in a limited pool of informal caregivers. People in these regions will likely have to organise themselves differently, with older people looking out for each other more. But they will probably also have to go without care more often than their counterparts in other regions. We would like to know how networks in these regions are organising themselves, and how best to coordinate policy with this."