Take It or Leave It
By Jan Vincent Meertens
“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 15 participants in my cultural awareness training. Her 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 the help that is available to them.”
Ellen, from Rotterdam, described one of her cases. “A Vietnamese family was assigned to me last year. The father had been diagnosed with Alzheimer’s and 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 ask for outside help. The family had slowly become isolated.”
Anneke, who is based in The Hague, said: “Well at least they decided themselves that an outside agency was the best way to go.” “The one daughter, yes,” responded Ellen. “But I agree: we often face reluctance and sometimes outright distrust.”
Dementia in migrant communities is an increasing problem in the Netherlands and worldwide. The number of migrant patients diagnosed with dementia is increasing at a rate more than double that of the 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.
'Was it shame because of the stigma of dementia or the shame of being seen as letting the family down should one not provide the care?'
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 talk about a few Dutch family cases in their practice and list the differences they observed compared with 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 carefully navigate 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. This, in contrast with many of the migrant families.” The others agreed. There is no immediate trust.
“Would I trust external caretakers as easily if I were 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, and 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 should one not provide the care?
“In the Netherlands we might feel guilty about sending a parent off to a nursing home or having outside support services attend to the needs of our 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.
'By sharing their experiences and understanding the deeper values in these communities, Dutch caretakers learn to accept that the relationship between individuals develops differently'
“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 to great lengths to care 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, this is because of the stigma of dementia, and the need to save face in the community, but also because of a 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 period 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 that fulfilling this obligation is associated with a deep-seated feeling of ‘saving face’.”
The group of dedicated case managers recognized the deeply-rooted cultural differences that emerge when family members become seriously ill, which can be exacerbated in case of dementia. By sharing their experiences and understanding the deeper values in these communities, the Dutch caretakers learned to accept that the relationship between individuals develops differently in the Netherlands than in many other cultures. Dutch society is built on individuality, many others on collectivism.
During the training, the caretakers’ frustration of not being accepted, let alone involved, in an early stage was transformed into an understanding and acceptance of 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 that is doing their best to cope with difficult times and trying to be a local on foreign soil.