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September 25, 2020

Dementia and Culture

Reuel S. Amdur

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With three-quarters of new immigrants coming from Africa and Asia, we need to give attention to the peculiar health needs of this population. One aspect of the problem is how we address dementia, including Alzheimer's. Dementia mainly affects older people, 65 plus. There are roughly 25,000 new cases annually in Canada. A quarter of people over 85 are afflicted. The disease is seen by people from various cultures in different ways.

Ngozi Iroanyah spoke of her experience.  She is a third-year Ph.D. student at York University studying health policy and equity.  She made a web presentation for the Social Planning Council of Ottawa on September 15.  In her talk, Iroanyah gave a glimpse of the cultural aspect of dementia care in her family.  Her father suffers from dementia, and she has been discussing with family the eventual necessity of long-term care as his condition deteriorates.  One relative reacted with outrage: “We care for our older people ourselves.”  The idea of such a placement was inconceivable.

In her talk, she spoke of culture and language and their impact on dealing with dementia.  If the health care provider does not speak the person’s language and the patient does not speak English, there is a barrier.  In some languages there is no word for dementia.  Additionally, there is the problem of doctor-speak, a language that even native English-speakers may find baffling. 

Different cultures experience dementia in their unique ways.  For some it has a negative connotation.  For others it may be neutral or even positive.  As a result, if it is seen as “no big deal,” a family may delay in seeking care.  Some may see dementia as shameful, not only for the individual but also for the family.  Thus, if someone has dementia that fact may mark the family off as one to avoid.  A younger person in the family may be seen to be undesirable as a potential marriage partner.  Because of the feeling that the family needs to care for its elders, guilt may get in the way of arranging care. 

People of different cultures may feel that they are not seen in the care process, that they are not treated as individuals. There is a need for culturally appropriate resources and information.  In the process of negotiating a treatment relationship, the health care provider needs to be culturally knowledgeable and skilled in engaging the culturally different patient. 

There is a Western understanding of dementia, but it is sometimes seen differently in other cultures.  Even where it is seen as negative, the degree of negativity may be less.  Others may have a totally different sense of it.  There needs to be an awareness of the difference, and each patient must also be seen as a whole person, not just as someone with dementia.  He is a retired shopkeeper, a husband, a parent, a member of a religious organization, etc.

Iroanyah spoke of fitness.  For brain health, reading is important for young people. When we get older, especially as cognitive functions decline, verbal communication becomes more important.  Of course, we also need to continue to maintain physical fitness throughout life.

She argued that equality is not enough in health care.  There is also the matter of equity, meaning that services are available to people in whatever state they find themselves.  Part of equity involves making services accessible in terms of hours of service, location, and suitable delivery model—one-on-one?  group? family?

Community-based programs for different cultural groups need to be culturally relevant and sensitive. Health promotion around dementia needs to reduce stigma and increase awareness.  It helps if cultural outreach involves staff including members of that cultural community.  Other providers need training in cultural competence and trust building.

She emphasized a need for more research on immigrant seniors facing dementia, focusing on the various immigrant populations.  As well, she would like to see community-based research and race-based data collection as related to health.

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