Diagnosis: Dementia

Are you saying I’m crazy?

When we think about the diagnosis of dementia, as medical doctors we generally think of a neurocognitive degenerative disorder. However, that may not be what our patients and their families or caregivers are thinking. In many languages the word “dementia” translates into words with numerous negative connotations. Many cultures have difficulty accepting the diagnosis of dementia.[1] As physicians, we need to be sensitive to understanding what a diagnosis of dementia means to patients and how it may affect the individual and their support network. Use of an interpreter may ameliorate some of the difficulties of communicating the diagnosis and may also prevent possible negative associations and isolation. In addition, providing education and written materials in a patient’s native language can assist caregivers and the patient with their understanding of diagnosis and prognosis.

If you search for the definition of dementia in Google, the following result is returned: “a chronic or persistent disorder of the mental processes caused by brain disease or injury and marked by memory disorders, personality changes, and impaired reasoning.”[2] And the following synonyms are offered: “mental illness, madness, insanity, derangement, and lunacy.”[2] It is not hard to see why the general English-speaking population may have difficulty digesting a diagnosis of dementia given the historical definition provided. 

What are some of the other cultural differences in perception of this diagnosis? In Arabic-speaking communities, dementia is often considered a normal part of aging, but it is also associated with having a mental illness. The word kharaf is a common term in Arabic used to describe dementia. It roughly translates to mean “unraveled, lost their mind, or speaking nonsense,” and commonly carries negative connotations.[3]

The Chinese language encompasses many dialects, and the view of dementia differs among Chinese communities. Some consider it to be a normal part of aging while others are inclined to not even discuss symptoms or the diagnosis of dementia. It is often kept secret within families. As such, there may be more incidents of social isolation of the affected individuals.[3] In traditional Chinese, dementia roughly translates to “crazy, madness, crackers, or hysterics.”[4] 

In general in Spanish, the term dementia translates equally to mean “forgetfulness” and “memory loss.”[3] However, in some of the numerous dialects it translates to “loco” or “crazy.”[3] Other translations include “insanity” and “madness.”[4] The acceptance of dementia is quite high for many Spanish-speaking communities and family support is usually quite good.[3]

Some other literal translations include “imbecility” in Russian, “madman” in Japanese, and “entrancement,” “insaneness,” and “neurosis” in Hindi.[4]

An interpreter can play an important role both in the initial assessment of a suspected dementia and in the dissemination of information to the patient and supporting individuals. Since many cultural values and attitudes are passed on through language,[5] it is important to ensure that the right messages are being transmitted. Use of an interpreter can help pass on the diagnosis of dementia and can assist with any questions arising from the patient or the family. It is important that the interpreter be advised ahead of time to not use the more negative connotations of the word “dementia.” He or she must understand the need to explain that dementia is a common term used to explain numerous degenerative brain disorders and that it is not synonymous with a mental illness. Ultimately, there is a risk that the inability to communicate effectively may lead to inadequate follow-up care and, perhaps, cultural isolation.[3]

As physicians, cultural sensitivity and attempting to explore the perceptions of the diagnosis of dementia once it has been disclosed is essential to ensuring a basic understanding of the disease for patients and their families. Hinton and colleagues found that many patients and families have had common adverse experiences related to the diagnosis of dementia due to unsatisfactory diagnosis disclosure and explanation, inadequate workup, uncaring or insensitive attitude, language barriers, and discrimination.[6] Provision of basic education on dementia and the most common contributing factors may ease the acceptance of the condition for patients diagnosed with dementia and their families. Encouraging the supporting individuals to educate themselves is also key to ensuring less social isolation and stigmatization of those diagnosed with dementia.

There are many written materials available in various languages on the Alzheimer Society of BC’s website (www.alzheimerbc.org/We-Can-Help/Resources-and-Information/Non-English-Resources.aspx). Information is currently available in English, French, Japanese, Chinese, Korean, Farsi, and Punjabi. For more dementia resources in other languages, visit the Alzheimer’s Disease International website (http://www.alz.co.uk/). 
—Lauri McCoy MD, CFPC, Geriatrics

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This article is the opinion of the Council on Health Promotion and has not been peer reviewed by the BCMJ Editorial Board.

References

1.    Bunn F, Goodman C, Sworn K, et al. Psychosocial factors that shape patient and carer experiences of dementia diagnosis and treatment: A systematic review of qualitative studies. PLoS Med 2012;9:e1001331.
2.    Google, s.v. “dementia.” Accessed 19 December 2014. www.google.ca/search?client=firefox-a&hs=8Co&rls=org.mozilla%3Aen-US%3Ao....
3.    Alzheimer’s Australia Vic. Perceptions of dementia in ethnic communities. Victoria, 2008. Accessed 19 December 2014. https://fightdementia.org.au/sites/default/files/20101201-Nat-CALD-Perce....
4.    Google Translate. Accessed 19 December 2014. https://translate.google.com/.
5.    Hadziabdic E, Hjelm K. Working with interpreters: Practical advice for use of an interpreter in healthcare. Int J Evid Based Healthc 2013;11:69-76.
6.    Hinton L, Franz C, Friend J. Pathways to dementia diagnosis: Evidence for cross-ethnic differences. Alzheimer Dis Assoc Disord 2004;18:134-144.