Introduction: There are multiple inequalities experienced by people from minoritised ethnic backgrounds when diagnosing dementia. One, is that the cognitive assessments are not culturally appropriate. The ACE-III has been culturally adapted for South Asian communities in the UK, specifically those who speak Urdu and Hindi. This study aims to explore service users’, family and supporters’ and staff members' experiences of the culturally adapted ACE-III.
Methods: Semi-structured interviews were undertaken with ten participants; three service users who had recently undergone the adapted assessment, three family members who supported during the assessment and four staff members who administered the assessment. The interviews were analysed using reflexive thematic analysis.
Results: Three themes were identified. ‘What Culture Though? Language Matters’ explores how the adaptations within the culturally adapted ACE-III were valuable at times but were not always helpful or relevant. The theme ‘Uncertainty Around the Purpose and Process’ focuses on the uncertainty experienced by the participants and how this impacted how it was administered and confusion when working with interpreters. Finally, ‘It’s a Start: Moving Towards Equitability’ considers how the cultural adaptations begin to address some of the inequalities in non-adapted assessments, and how to keep working towards this.
Discussion: This study highlights some of the challenges in culturally adapting a cognitive screen from the perspective of service users, their family and supporters and staff members. The cultural adaptations were valued in some respects, such as providing more familiar and relevant assessment content. However, some cultural adaptations were less helpful, and, for some, elements of the non-adapted assessment were preferable to the adapted version. The complexity and tension in personalising the assessments whilst still adhering to standard procedures in cognitive tests to maintain validity are discussed. The strengths of this study, such as this being one of the first in-depth studies to explore service user, family and supporter and staff members experiences, from a minoritised ethnic background, of culturally adapted cognitive screen as part of a memory assessment are discussed. This project has highlighted important areas for future research and provided novel insight into service user and family experiences of acculturation, the use of additional languages and personalising cognitive tests whilst maintaining the psychometric integrity of the test.
