Informal care

Providing informal care is a necessary and meaningful activity for many people in the Netherlands. Many others, however, find informal care difficult and burdensome. They often have to care for someone alongside a busy job and family responsibilities. Research and innovation on support for informal carers is therefore an important focus of attention for ZonMw.

Focus on the informal carer

In care for terminally ill people, a lot of attention is given to the patient. But it is at least as important to consider their informal carer. The question is how best to do this as a healthcare professional.

Every informal carer and every informal care setting is unique. Several projects have studied the different support needs of informal carers, and produced tools and training for healthcare professionals so that they can provide the necessary support. It is not however simply a matter of ticking off items on a list. A good discussion to reveal the real needs, and find solutions, is vital.

In this interview project leaders talk more about their projects and how the informal care alliance now established is leading to better support. All the tools from the research project can be found on the website (in Dutch).

Role of healthcare professionals

The Overburdened Informal Carers Quality Standard helps professional carers and nursing staff to offer the right support: both personal support for informal carers and support for the care they provide. It includes a clear procedure that provides clarity about the role of the healthcare professional.

Informal carers in the healthcare sector

No fewer than one in four healthcare workers are also informal carers. Helping them to find a better balance between work and informal care responsibilities helps keep healthcare workers healthy and fit for work. In Limburg policymakers, practitioners, researchers and various organisations are working together to implement informal care-friendly policies in healthcare organisations.

In the Informal carers in the healthcare sector: who cares? project, the combination of informal care and work is considered a key focal point, to keep healthcare workers fit for work in the long term. The project aims to implement, embed and disseminate the four-step plan for informal care-friendly policy to improve discussion of and support for healthcare workers with informal care responsibilities, to keep them fit for work in the long term.

Maintaining a balance

Besides tools to help healthcare professionals support informal carers, tools also exist for informal carers themselves. In the Netherlands, there are approximately 600,000 informal carers looking after a relative who is receiving palliative treatment. Many of them have no time for themselves, and would like to find and maintain a better balance in their lives. The new MantelzorgBalans (‘Informal Care Balance’) tool helps informal carers to find or regain the balance between care responsibilities and other activities. It includes exercises that help users think about their own boundaries, and also more in-depth information about how to arrange for home care.

Using the experience of informal carers

Caring for a loved one with dementia is a heavy burden, and the pressure on society is only likely to increase over the coming years, as current policy is to keep people with dementia living at home for longer. Many informal carers have the feeling that they are facing the situation alone and have to find all the answers themselves. While caring for their relatives, however, informal carers gain a lot of knowledge and experience, which often goes unused after their loved one has died. How can this valuable expertise be secured and shared, to support current and future informal carers? Marjolein van der Marck, senior researcher at the Radboud UMC’s Radboud Alzheimer Centre is considering this question in the GOUDMantel project.


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