What is going on?
‘Earlier research has already shown that informal caregivers with a migration background provide longer and more intensive informal care than is usual in the Netherlands. My own research into informal carers with a Turkish, Moroccan, Moluccan, Chinese or Surinamese background shows that they often find it difficult to formulate a clear request for help with a loved one with dementia. And once they have managed to make contact, they feel misunderstood by the professionals. As a result, they often receive too late or not the right support and there is a threat of overload, or even worse.’
Menal Ahmad is a postdoctoral researcher at the Vrije Universiteit in Amsterdam and obtained her PhD with this research at the University of Humanistics in Utrecht.
‘Conversely, care providers feel powerless because contact with informal carers with a migration background is often difficult. They want to help, but they often don’t know how. For example, a case manager told me that she was completely stuck when a client told her that dementia was seen as a curse in the family. She felt that she did not have the right cultural knowledge to discuss this. While: it is not necessarily culturally determined to see dementia as a curse. For the informal carer it is often more about a lack of knowledge about dementia than about culture.’
Why is it a problem?
‘Due to the aging of migrants who have come to the Netherlands in recent decades, the number of informal carers with a migration background will increase rapidly. In addition, research has shown that non-Western elderly people in the Netherlands more often suffer from cardiovascular disease, loneliness and diabetes – the risk factors for developing dementia. I fear that the current formal care is not yet sufficiently equipped to cope with this increase.
‘From my conversations with care providers it became clear that they mainly link the difficult contact to cultural differences. There are unconscious biases in this, such as the assumption that Dutch people with a migration background do not ask for professional help because they share care tasks with people from their large network of family, friends and their community. In reality, caring for someone with dementia usually falls on the shoulders of one person, usually the wife or daughter.
‘That is not to say that culture does not play any role, but factors such as the social class and migration background of an informal caregiver often weigh more heavily. Someone who grew up in the countryside in Turkey and has little education will take longer to find their way to formal care than a Turkish Dutchman who was born in the Netherlands in a middle-class family and who has studied.
Religion can also play a role. Many informal carers draw strength from their faith to take care of the care or feel a strong moral obligation from their religious convictions to keep it up, even if it is no longer possible. But a person is always much more than the cultural group with which he or she identifies. In order to reach all informal carers, it is therefore important to understand the individual experiences and needs of informal carers.’
What has to happen?
‘Both informal carers with a migration background and care providers notice how important it is to build up a relationship of trust. It really doesn’t take that much: it makes a difference if a care provider tries to find out the background of an informal carer during the first meeting. Where and how did he grow up, and what role does that play in the care that is provided? With more personal knowledge, it quickly becomes clear what an informal carer needs. Currently, the questions from healthcare professionals are often mainly aimed at, for example, mapping out the stage of dementia.
‘It is also very important that professionals in contact with informal carers bear in mind that the latter want recognition. Those who care for a husband or mother with dementia for a long time are proud of that. The well-intentioned question from a healthcare professional whether people have already ‘thought about a nursing home’ hits hard, because it gives the impression that they want to take care of that care. It would already make a huge difference if you emphasized that the informal carer can continue to care for that loved one.’
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