Understanding engagement in diet and dementia prevention research among British South Asians: a short report of findings from a patient and public involvement group

Yi J Sim; Rebecca F Townsend; Susanna Mills; Rachel Stocker; Emma Stevenson; Claire McEvoy; Andrea M Fairley

doi:10.1111/jhn.13316

Understanding engagement in diet and dementia prevention research among British South Asians: a short report of findings from a patient and public involvement group

J Hum Nutr Diet. 2024 May 7. doi: 10.1111/jhn.13316. Online ahead of print.

Authors

Yi J Sim¹, Rebecca F Townsend^{1

2}, Susanna Mills^{2

3}, Rachel Stocker^{1

2}, Emma Stevenson^{1

2}, Claire McEvoy⁴, Andrea M Fairley^{1

2}

Affiliations

¹ School of Biomedical, Nutritional and Sport Sciences, Newcastle University, Newcastle upon Tyne, UK.
² Human Nutrition and Exercise Research Centre, Centre for Healthier Lives, Population Health Sciences Institute, Newcastle University, Newcastle upon Tyne, UK.
³ Population Health Sciences Institute, Faculty of Medical Sciences, Newcastle University, Newcastle upon Tyne, UK.
⁴ Centre for Public Health, School of Medicine, Dentistry and Biomedical Sciences, Queen's University Belfast, Belfast, UK.

PMID: 38713734
DOI: 10.1111/jhn.13316

Abstract

Background: Dementia is a global public health challenge. Evidence suggests that individuals from South Asian communities are an at-risk group for dementia, partly as a result of early and cumulative exposure to known dementia risk factors, such as obesity and type 2 diabetes. There needs to be more culturally appropriate community engagement to increase awareness of dementia and identify better strategies to encourage participation in dementia-related research.

Methods: We aimed to better understand the barriers and facilitators towards engaging with, and participating in, diet and dementia related research among British South Asians. This was achieved using a public and patient involvement (PPI) approach. A community-based, engagement event involving information sharing from experts and roundtable discussions with South Asian communities (n = 26 contributors) was held in June 2023 in Newcastle-upon-Tyne, UK. Collaboration from preidentified PPI representatives (n = 3) informed the content and structure of PPI activities, as well as recruitment. Data were synthesised using template analysis, a form of codebook thematic analysis. This involved deductively analysing data using relevant a priori themes, which were expanded upon, or modified, via inductive analysis.

Results: The findings highlighted the importance of trust, representation and appreciation of cultural barriers as facilitators to engagement in diet and dementia risk reduction research. Consideration of language barriers, time constraints, social influences and how to embed community outreach activities were reported as driving factors to maximise participation.

Conclusions: This PPI work will inform the design and co-creation of a culturally adapted dietary intervention for brain health in accordance with the Medical Research Council and National Institute for Health and Care Research guidance for developing complex interventions.

Keywords: dementia; diet; public and patient involvement; research engagement; risk reduction.

Grants and funding

The Faculty of Medical Sciences at Newcastle University