Issue 41 / 21 October 2019

THE current body of research on dementia does not reflect the ethnic and cultural diversity of the Australian population, leaving people from culturally and linguistically diverse (CALD) backgrounds receiving inequitable dementia care, say experts.

Writing in a Perspective published by the MJA, Associate Professor Lee-Fay Low, from the University of Sydney, and colleagues said that CALD people were under-represented in most recent research.

“Of the 15 dementia clinical trials published between 2016 and 2018, two studies reported that 33.3% and 31.6% of participants were from non-Australian backgrounds, and three studies reported that 7.1%, 12.5% and 57.0% of participants spoke English as a second language. The remaining ten studies did not report ethnicity-related data,” they wrote.

“We also searched the Australian New Zealand Clinical Trials Registry and ClinicalTrials.gov and found that 42 of the 94 currently registered active dementia clinical trials in Australia (44.7%) excluded patients not fluent in English.

“A systematic review of 96 international randomised controlled clinical trials to improve cognition related to dementia (total of 37 278 participants) found that of the 39 trials (39.4%) reporting ethnicity, pooled data showed that only 11.4% (95% CI, 7.5–15.9%) of participants were non-Caucasian.”

Low and colleagues wrote that Australian dementia research was contributing strongly to international gains in early detection and lifestyle-related risk reductions. Initiatives such as the Australian Imaging, Biomarkers and Lifestyle (AIBL) prospective risk identification study with over 1000 participants, the Maintain Your Brain online dementia risk-reduction trial with a target of 8500 participants, and the Australian Dementia Network (ADNeT) dementia registry and memory clinic network were notable.

“Given that one in three older people in this country are from a CALD background, it is important that these initiatives focus on achieving ethnic or cultural diversity in their samples, and support the participation of people with low English proficiency,” they wrote.

“At the very least, data collected on CALD variables, such as country of birth, years lived in Australia, proficiency in English and language spoken at home, must be considered in the analyses and subsequent publications.

“We believe that across all Australian dementia research, overall CALD participation should be around 30%, proportional to the total CALD population in Australia of people aged 65 years and over.”

The authors proposed four strategies for researchers that may increase CALD participation:

  • recognising diversity as a priority — grant funders should require applicants to address how they will support the inclusion of CALD populations or at least justify their exclusion;
  • funding the additional costs of translation or interpreters;
  • leveraging existing datasets to study ethnic and cultural differences in dementia; and
  • support from academic publications in encouraging reporting of variables relating to ethnicity or culture, and ethnicity-specific analysis, where appropriate.

“Finally, we might be able to increase uptake of research opportunities by CALD participants through ensuring that research questions are relevant to them, increasing awareness of dementia, and ensuring accessibility of materials, such as cultural relevance, language and level of literacy,” Low and colleagues concluded.

“Through such strategies, Australian dementia research, and Australian medical research more broadly, can more accurately reflect the ethnic and cultural diversity of the Australian population.”

The Dementia Australia website contains a section on “cultural awareness” focused on the language used to talk about dementia.

“Using the term dementia and related words in English may not always be appropriate when talking to people from culturally and linguistically diverse communities or in translation as it may be seen as offensive or disrespectful. Although the understanding of dementia is growing in the Anglo Australian community, there is still a lack of awareness of dementia in many diverse communities. In some cases dementia may be regarded as a mental illness or as a normal part of ageing.

“Words and phrases that are appropriate in one community may be offensive or of no meaning in another community. It is important to be aware of the cultural background of the person, family or community so that you can use the most appropriate language. It is always advisable to seek guidance from culturally and linguistically diverse communities on appropriate terminology where possible.”

Dementia resources for clinicians:

2 thoughts on “Dementia diversity: under-representation of ethnicity

  1. Ludomyr Mykyta says:

    A timely reminder. Some practices, such as using family members as interpreters can lead to very erroneous conclusions. I make it my rule to interview patients privately and I regularly use the Telephone Interpreter Service, who can match most dialects as well as languages. The use of teenage relatives is particularly inappropriate. I can follow most Slavonic languages, but not well enough to conduct a clinical interview. On one occasion, a teenager who was the only relative with enough English to interpret, but did not realise that I understood what he was saying was grossly disrespectful to his grandmother. I stopped him and told him that he could not speak to her like that and told him to get out before I clobbered him about the ears. Of course I would not have laid hands on him, but I did tell his father, who did.

  2. Graham Row says:

    This article raises the important but under emphasised cultural and linguistic barriers in aged care and dementia. It is said that music is a universal language and its benefits (and potential harms) in dementia are increasingly realised. Over the past decade, the community broadcaster 4MBS has broadcast a radio programme, “Silver Memories” now distributed by satellite to subscribing aged care facilities. While originally developed as age-relevant entertainment for the elderly, its benefits in dementia were identified very early. The programme takes its therapeutic responsibilities seriously and continues to evolve guided by user feedback and advice from aged care professionals. Silver Memories, being a “popular appeal” broadcast differs from other proven-effective individually-tailored music therapies but has important advantages of cost and accessibility. We are conscious of the dilemma of cultural and language diversity. We need to know if the music of Bing Crosby and Vera Lynn can penetrate language and cultural barriers but lack the resources to test it.

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