Culturally Adapting Evidence on Dementia Prevention for Ethnically Diverse Communities: Lessons Learnt from co-design

ABSTRACT

Objectives

40% of dementia cases can be prevented by addressing 12 lifestyle factors. These risk factors have increased presence in ethnic minorities, yet dementia prevention messages have not reached these communities. This article investigates the experience of co-designing a dementia prevention animated film with 9 ethnic groups in Australia.

Methods

Evidence-based recommendations were adapted through an iterative process involving workshops with a stakeholder advisory committee and nine focus groups with 104 participants from the Arabic-, Hindi-, Tamil-, Cantonese-, Mandarin-, Greek-, Italian-, Spanish-, and Vietnamese-speaking communities. Data were analyzed using the Normalization Process Theory.

Results

Cultural adaptation involves consideration of the mode of delivery, imagery and tone of the resource being developed; ensuring cultural adequacy; anticipating the need of the end-users; and managing linguistic challenges associated with working across multiple languages.

Conclusions

Learnings from this co-design process offer valuable insights for researchers and program developers who work with ethnic minority groups.

Clinical Implications

• Adaptation across cultures and languages is a negotiation not a consensus building exercise

• Linguistic adaptation requires consideration of the education levels, and linguistic and intergenerational preferences of community members

• Co-designing across multiple languages and cultures risks “flattening out” key aspects of cultural specificity.

KEYWORDS:

• Australia
• dementia
• prevention
• ethnic minorities
• co-design
• animated film

Acknowledgments

The authors acknowledge the members of the Stakeholder Advisory Committee for their guidance and expertise; the organizations across Australia that facilitated the focus groups with the communities; and the community participants themselves that gave generously of their time and views.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability of statement

All 10 versions of the animation are freely available on https://www.nari.net.au/adapt

Additional information

Funding

The project was funded by a health promotion grant from the Department of Health’s Public Health and Chronic Disease Program [Grant No 4-EB20CXJ]. The authors confirm that the funding body had no involvement in the research.