Take it or leave it

“At one point I thought: take it or leave it,” said Marijke, a case manager for dementia in the City of Eindhoven. Marijke was one of the fifteen participants in my cultural awareness training. Marijke’s frustration was shared by her peers. “Migrant families do not always recognize or acknowledge dementia in a family member,” Marijke continued. “Those families are often unwilling to accept our help that is available to them.”

Ellen, from Rotterdam, portrayed one of her cases. “A Vietnamese family was assigned to me last year. The father had been diagnosed with Alzheimer’s and the one of the daughters had finally contacted us for support. Had she only called us earlier!” Ellen sighed, “Not only was the father in an advanced stage of dementia, but the eldest daughter was under a lot of strain. Her younger sister was the one who had called us. She had clearly gone against the wishes of her family to go outside for help. The family had slowly become isolated.”

Anneke, who is based in The Hague, said: “Well at least they had decided themselves that an outside agency was the best way to go.”

“The one daughter, yes,” responded Ellen. “But I agree: we are often facing reluctance and sometimes outright distrust.”

Dementia in migrant communities is an increasing problem in the Netherlands and worldwide. The number of patients diagnosed with dementia increases at a rate more than double of that of native Dutch. There are a number of reasons for this increase. Until recently, the mean age for migrants was well below 65.The original migrants are getting older now and these older, first generation, members of these communities are often more susceptible to the health risks associated with poor diet, lack of exercise and smoking and, consequently, to the risk of vascular dementia through conditions such as heart disease and diabetes. Individual cases become complex because of delayed consultation for diagnosis, fear of discrimination and cultural stigma.

Ellen, Anneke, Marijke and the others discussed different families with a migrant background – mostly families from South East Asia, Turkey, Eastern Europe, North Africa and the Caribbean – in their practice. They agreed that there were certain common tendencies amongst these families: lack of trust, concealing the dementia and keeping it within the family were only a few of the aspects mentioned.

I asked the group to discuss a few Dutch family cases in their practice and list the differences they observed from the migrant families. All agreed that the differences were profound and that this challenged them as caretakers: rather than using the ‘Dutch approach’, they had to now navigate carefully through the cultural nuances that were often “rough seas” for the families concerned. “Dutch families actively seek external help even if this is not yet assigned to them,” Ellen said. “There is immediate trust in the relief we can offer. That is in contrast with many of the migrant families.” The others agreed. There is no immediate trust.

“Would I trust external care takers as easily if I would be an expat?” It was Willem from Amsterdam posing this rhetorical question. The group was unanimous in their response.

“Yes, I think my initial reaction to the offer of external care would be to grant trust, as long as the organization involved is certified, of course.” Marijke voiced the sentiment of the group.

“Or is there more to it than just trust?” I asked. The group pondered my question. Trust for sure, but most had also sensed shame, a tendency ‘to keep it within the family’. And was it shame because of the stigma of dementia or the shame of being seen as letting the family down if one would not provide the care?

“In the Netherlands we might feel guilty of sending a parent off to a nursing home or have outside support services attend to the need of the elderly. But we do not feel shame. It is accepted that we have our own lives. Children, jobs, many activities. It is how our parents raised us; to lead our own lives,” said Julie.

“And we do not have a moral obligation to be the sole caretaker – this strong sense of needing to fulfill a duty, a deeply rooted obligation towards the elderly,” added Ellen. “The elder daughter of the Vietnamese family, a mom of three with a part-time job, was compelled, at her own expense, to go through great length in caring for her father. She once told me that she did this to gain his blessings.”

The group realized that in other cultures there is a precarious balance between shame, inner pride and duty. If a family member suffers from Alzheimer’s, this balance is put to the test. Perhaps, because of the stigma of dementia, to save face in the community but also because of fear of condemnation? The group summarized: “Trying to keep it within the family,” said one. “Conflict between shame and inner pride,” said another. The result is often a long stage of denial and concealment, and finally isolation.

“The Korean way of thinking, I was once told by a third-generation teenager with roots in Korea,” said Marijke, “is that caring for the elderly is a responsibility and fulfilling this obligation is associated with a deep feeling of ‘saving face’”.

The group of dedicated case managers recognized the deeply rooted cultural differences that emerge when family members become seriously ill, exacerbated in cases of dementia. By sharing their experiences and understanding the deeper values in these communities the Dutch care takers learned to accept that the relationship between individuals is developed differently in the Netherlands than in many other cultures. The Dutch society is built on individuality, many others on collectivism.

During the training the care takers’ frustration of not being accepted, let alone involved, in an early stage was transformed to understanding and accepting cross-cultural issues such as trust, saving face and obligation. ‘Take or leave it’ is not an option. The option is to accept and address these issues and provide enough opportunity to build trust, avoid loss of face and allow younger generations to fulfill their duties. Caring for these sentiments is caring for the person suffering from dementia as well as for the family doing their best to cope with difficult times and trying to be a local on foreign soil.