Dementia does not discriminate. It can be found anywhere in the world. However, the way dementia is viewed differs between communities, because dementia itself is in part a culturally determined phenomena. It relies on our ability to name and give form to a collection of changes. Some South Asian groups do not even have a word for dementia in their language. Our culture and ethnicity determines how we understand dementia, what stigmas we may associate it with, the care people with dementia receive, and the way we experience it. Alzheimer’s Australia has investigated how dementia is perceived differently in culturally and linguistically diverse communities in Australia. Their study provides important insights into how dementia is viewed and how this impacts on the experience PwD and their carers have.
In her book “Dementia, Culture and Ethnicity: Issues for All?” Dr Julia Botsford explores the importance of acknowledging that an individual’s experience of dementia will be impacted on by their culture and ethnicity. TV, film, and literature are increasingly important for shaping our cultural understanding of dementia. As the issue of dementia has become increasingly high profile over the last few years, our awareness and understanding of the cultural and ethnic impact on the way we experience dementia has improved.
What is dementia?
The cultural meanings attached to dementia within societies are not universal, and the way we understand dementia is affected by gender, social class, ethnicity, and individual biography. Western culture has a relatively consistent understanding of dementia as a result of brain disease. In this context, dementia is viewed as a medical condition caused by several diseases, and it is recognised that both the person with dementia (PwD) and their carers can benefit from acknowledging the condition and seeking support. However, understandings of dementia are culturally shaped, and many communities view dementia as a natural part of the aging process or as a mental illness or ‘madness’. This means that in many communities dementia is not as easily acknowledged, and may be stigmatised. There are now world-wide programs to destigmatize dementia.
Living in a community, where dementia is not easily recognised can isolate individuals, as they may feel ashamed because of their condition. Similarly, family members may feel that inappropriate behaviour could be embarrassing and increase social isolation by reducing contact with friends.
With globalisation more and more people have migrated to different countries, and often people may speak more than one language. However, as dementia progresses, it is not uncommon for bilingual people to lose the ability to speak the more recently learned language. This can present a significant problem, especially if the PwD reverts to their native language that may not be understood by those caring for them.
Providing care for PwD
How our community understands and approaches dementia has a huge impact on the care a PwD will receive as it affects:
Understanding and acknowledging the nuances of ethnicity and culture, and the issues that come with these are key to providing the right kind of support for people. Dementia services now acknowledge the importance of “cultural competence”. Cultural competence means that professionals are aware of their own identity and how it might be perceived, and have an open mind to everyone they come in contact with.
In the future it will become increasingly important that policy makers and dementia services are aware of how culture and ethnicity affects an individual’s experience of dementia.