European research project on informal caregivers

In the Netherlands, approximately five million people provide informal care to their spouses, parents, children or other relatives or friends with health issues. This can be quite a burden, especially if the informal caregiver also has a job and a family of their own. How can we support informal caregivers and ensure that they are able to continue to provide care without becoming overburdened, which would cause a major problem to society? That is the main focus of the European research project led by Mariët Hagedoorn, Professor of Health Psychology at the UMCG.

The increasing number of people, especially elderly individuals, who need long-term care and the decreasing number of informal caregivers is not only a problem in the Netherlands, but throughout Europe. The care system relies heavily on the provision of informal care, so the burden on informal caregivers is ever-increasing.

To put things into perspective: 34% of the European population provides informal care. This group provides no less than 80% of all long-term care given. Therefore, it is no surprise that these people often become overburdened and eventually drop out.

Mariët Hagedoorn explains: ‘Many people are not aware that they are, in fact, informal caregivers. An informal caregiver provides unpaid care to a relative or friend with a chronic illness, disability or other long-lasting health or care need. The care provided may vary between doing groceries for an elderly neighbour for one hour a week and caring for an ill father for almost 24 hours a day. Although care may be provided for a short period of time, e.g. in cases of the flu, it usually involves long-term care. We are particularly concerned about the people who provide long-term, intensive informal care. How can we offer them adequate support to prevent them from becoming overburdened?’

Broad network

Two years ago, Hagedoorn initiated the large-scale European project ENTWINE*, in which 15 early-stage researchers for high-quality PhD training in the Netherlands, the United Kingdom, Italy, Israel and Sweden examine informal care at various levels and from different perspectives.

‘Together with experts in various fields, such as technology, policymaking, economics, psychology and sociology, we focus on how to make informal care sustainable so that people receive the care that they need without informal caregivers becoming overburdened’, Hagedoorn describes.

For instance, the researchers examine several psychological factors, including why people are willing to provide informal care and which arrangements can be made by informal caregivers and recipients so that sustainable care is achieved. Geographical factors also have a huge impact on the willingness whether or not to provide informal care – for example, it matters a great deal if an aunt with care needs lives in your village or an hour’s drive away.

To get a better understanding of the needs and experiences among informal caregivers and recipients, the researchers are asking people from nine countries to fill in a questionnaire twice in one year. Hagedoorn adds: ‘In addition, they are also welcome to fill in a very brief questionnaire each week. This provides us with a great deal of information because we can see which aspects and changes have long-term effects.’

Anti-stress robot

The research also focuses on existing solutions and how these can be further developed. In the United Kingdom, for instance, a research project is investigating a robot helping informal caregivers to relax by sensing what mood they are in and by responding to it.

‘We are also testing existing e-health programmes to support our target group’, Hagedoorn says. ‘How can you take control of a situation? How can you find a balance between care tasks and other goals in life? Various exercises are available to help people make the right choices. We are also trying to find out whether these tools must be tailored to the needs of, for instance, young informal caregivers. The majority of informal caregivers are between forty and sixty years of age, and usually care for their spouse or parent. However, there are also youngsters or even children who care for an ill parent, for instance.’

Training project

Hagedoorn emphasizes that the research project is not intended to solve all problems. ‘It is a training project. Our aim is to train these fifteen early-stage researchers for high-quality PhD training so that they will continue to be able to perform research or other work focused on informal care, such as work in businesses or organizations that focus on policymaking.’

‘Hopefully, we will gain a lot of knowledge, based on which we will be able to make specific guidelines and advice available via e-health tools and to home care services, general practitioners and hospitals. We have a major consortium involving many people who are and will continue to be working together, aiming at solving new problems in this field.’

In the Netherlands, approximately five million – i.e. one in three – people aged 16 years and over provided informal care in 2020. In this group, 830,000 people provided long-term care (for more than three months) as well as intensive care (for more than eight hours a week). Among them, 460,000 people (9.1%) felt heavily burdened.