A retrospective analysis of the ethnicity of individuals referred to a tertiary neuropsychology service in the United Kingdom.

Objective: Ethnic minorities comprise approximately 18% of the UK population and are at high risk of developing neurological conditions. Despite this, there is little information regarding their access to neuropsychology services. This study evaluated whether ethnic minorities were proportionally represented in a tertiary neuropsychology department in the UK in accordance with census data for the region. We also aimed to highlight which ethnic groups were over- and underrepresented. Method: Anonymised demographic data of 3429 outpatient and 3304 inpatient referrals to an adult UK neuropsychology department was collected. These data were compared to the 2021 UK census data for the region. Results: Ethnicities in both the outpatient referrals (χ2(15) = 24066.55, p < .001) and inpatient referrals (χ2(15) = 35940924.75, p < .001) are significantly different from the Census. All ethnic minorities were underrepresented in adult neuropsychology referral data for both outpatient settings (-0.06% to -4.66%) and inpatient settings (-0.01% to -4.99%). Pakistani individuals were the most underrepresented across all settings, followed by individuals from an African background. Conversely, individuals of White British ethnicity were overrepresented in both outpatient settings (+10.73%) and inpatient settings (+15.68%). Conclusions: The UK ethnic minorities were not referred to a neuropsychology service relative to regional population prevalence. This contradicts their increased susceptibility for risk of neurological conditions but may also indicate the inaccessibility of neuroscience services for ethnic minorities. Replicating this study across different regions and gathering data on prevalence rates for different neurological conditions across ethnicity is recommended. Additionally, improving accessibility of neuropsychology services for British ethnic minorities should be prioritised.

A new tool for assessing the cultural adaptation of cognitive tests: demonstrating the utility of the Manchester Translation Evaluation Checklist (MTEC) through the Mini-Mental State Examination Urdu.

BACKGROUND: Low- and middle-income countries contribute to the majority of dementia and mild cognitive impairment cases worldwide, yet cognitive tests for diagnosis are designed for Western cultures. Language and cultural discrepancies mean that translated tests are not always reliable or valid. We propose a model for culturally adapting cognitive tests, one step of which is to assess the quality of any translation and cultural adaptation undertaken. We developed the Manchester Translation Evaluation Checklist (MTEC) to act as a tool for quality assessment and demonstrated its use by assessing a popular cognitive test that had been adapted. AIMS: Assess quality of the translation and cultural adaptation of the Urdu Mini-Mental State Examination developed for a Pakistani population. METHOD: Two raters completed the MTEC for the Mini-Mental State Examination (MMSE) Urdu and compared feedback. All authors were fluent in English and Urdu and familiar with Pakistani culture. RESULTS: Raters had 78.5% agreement across the MTEC. The MMSE Urdu was appropriately translated and retained grammar and verb tense, but three questions had spelling errors. Across 20 MMSE questions, 5 required further cultural adaptation because the questions were not understandable in daily use, comfortable to answer, relevant to the language and culture, and relevant to original concepts. CONCLUSIONS: The MTEC highlighted errors in the MMSE Urdu and demonstrated how this tool can be used to improve it. Future studies could employ the MTEC to improve existing translated measures of health assessment, particularly cognitive tests, and act as a quality check when developing new adaptations of tests and before psychometric validation.

Developing guidelines for the translation and cultural adaptation of the Montreal Cognitive Assessment: scoping review and qualitative synthesis.

BACKGROUND: Ethnic minorities in countries such as the UK are at increased risk of dementia or minor cognitive impairment. Despite this, cognitive tests used to provide a timely diagnosis for these conditions demonstrate performance bias in these groups, because of cultural context. They require adaptation that accounts for language and culture beyond translation. The Montreal Cognitive Assessment (MoCA) is one such test that has been adapted for multiple cultures. AIMS: We followed previously used methodology for culturally adapting cognitive tests to develop guidelines for translating and culturally adapting the MoCA. METHOD: We conducted a scoping review of publications on different versions of the MoCA. We extracted their translation and cultural adaptation procedures. We also distributed questionnaires to adaptors of the MoCA for data on the procedures they undertook to culturally adapt their respective versions. RESULTS: Our scoping review found 52 publications and highlighted seven steps for translating the MoCA. We received 17 responses from adaptors on their cultural adaptation procedures, with rationale justifying them. We combined data from the scoping review and the adaptors' feedback to form the guidelines that state how each question of the MoCA has been previously adapted for different cultural contexts and the reasoning behind it. CONCLUSIONS: This paper details our development of cultural adaptation guidelines for the MoCA that future adaptors can use to adapt the MoCA for their own languages or cultures. It also replicates methods previously used and demonstrates how these methods can be used for the cultural adaptation of other cognitive tests.

Developing and implementing guidelines on culturally adapting the Addenbrooke's cognitive examination version III (ACE-III): a qualitative illustration.

BACKGROUND: Cognitive tests currently used in healthcare and research settings do not account for bias in performance that arises due to cultural context. At present there are no universally accepted steps or minimum criteria for culturally adapting cognitive tests. We propose a methodology for developing specific guidelines to culturally adapt a specific cognitive test and used this to develop guidelines for the ACE-III. We then demonstrated their implementation by using them to produce an ACE-III Urdu for a British South Asian population. METHODS: This was a several stage qualitative study. We combined information from our systematic review on the translation and cultural adaptation of the ACE-III with feedback from previous ACE-III adaptors. This identified steps for cultural adaptation. We formatted these into question-by-question guidelines. These guidelines, along with feedback from focus groups with potential users were used to develop ACE-III Urdu questions. Clinical experts reviewed these questions to finalise an ACE-III Urdu. RESULTS: Our systematic review found 32 adaptations and we received feedback from seven adaptors to develop the guidelines. With these guidelines and two focus groups with 12 participants a sample ACE-III Urdu was developed. A consensus meeting of two psychiatrists with a South Asian background and familiarity with cognitive tests and cultural adaptation finalised the ACE-III Urdu. CONCLUSIONS: We developed a set of guidelines for culturally adapting the ACE-III that can be used by future adaptors for their own language or cultural context. We demonstrated how guidelines on cultural adaptation can be developed for any cognitive test and how they can be used to adapt it.

Recruitment and methodological issues in conducting dementia research in British ethnic minorities: A qualitative systematic review.

OBJECTIVE: Identifying existing recruitment and methodological issues within dementia research conducted in UK studies that included ethnic minorities. METHODS: We searched for and included any publication detailing dementia research in the UK that included any ethnic minority. The search results and all titles and abstracts were screened according to the inclusion criteria followed by screening of the full texts. We extracted data regarding the recruitment and methodological issues faced by the researchers. This data was combined and listed, and related issues were grouped into overarching themes and subthemes. RESULTS: Of 52 publications suitable for analysis, 33 provided data collated into six themes: attitudes and beliefs about dementia in ethnic minority communities, recruitment process, data collection issues, practical issues, researcher characteristics, and lack of published research and normative data. These themes allowed us to identify three areas responsible for addressing these recruitment and methodological issues: community and patient education, health services, and researchers' training. CONCLUSIONS: This is the first review identifying recruitment and methodological issues within UK dementia research that included ethnic minorities. We now have a compilation of reported existing issues and a framework of areas responsible for addressing them and devising solutions.

Cultural validation of the Addenbrooke's Cognitive Examination Version III Urdu for the British Urdu-speaking population: a qualitative assessment using cognitive interviewing.

OBJECTIVES: Our research determined whether the Addenbrooke's Cognitive Examination Version III (ACE-III) Urdu eliminated cultural bias through a qualitative assessment of its understanding and acceptability within the British Urdu-speaking population, employing cognitive interviews. METHOD: We aimed to recruit 25 participants fluent in speaking and writing Urdu, over the age of 60 years, able to give informed consent and who did not have a history of cognitive impairment. Participants were administered the ACE-III Urdu, and cognitive interviews were conducted, which involve obtaining verbal data on the individual's perception of the assessment overall, their understanding of the mental processes behind how they interpreted questions within the assessment and how they produced appropriate responses. This allows us to gauge the participants' overall thoughts on the Urdu ACE-III before applying question-formatted prompts to every ACE-III Urdu item. RESULTS: We recruited 25 participants, 12 women (48%), ranging from ages 60 years to 85 years (M=69.12, SD=6.57), all from Greater Manchester. Participants came from varied socioeconomic backgrounds, with 22 identifying as Pakistani, one as British Pakistani and two as East African. Across 19 ACE-III Urdu items, 7 required changes based on participant feedback: item 5a: fluency; items 6, 18 and 19: memory; items 12 and 13: language; and item 17: visuospatial abilities.The need for some of these changes was realised after 21 participants, due to persistently reoccurring issues, and these were applied before the last four participants. Overall, the ACE-III Urdu was considered easy and straightforward by all 25 participants, who understood items and felt the ACE-III Urdu was appropriate, not just for them, but for British Urdu speakers in general. CONCLUSION: Our cognitive interviews determined the ACE-III Urdu was acceptable, especially with regards to cultural context, but further changes were made to ensure understanding. Therefore, we adapted the ACE-III Urdu in accordance with feedback, resulting in our finalised version being culturally validated.

Dementia in UK South Asians: a scoping review of the literature.

OBJECTIVE: Over 850 000 people live with dementia in the UK. A proportion of these people are South Asians, who make up over 5% of the total UK population. Little is known about the prevalence, experience and treatment of dementia in the UK South Asian population. The aim of this scoping review is to identify dementia studies conducted in the UK South Asian population to highlight gaps in the literature which need to be addressed in future research. METHOD: Databases were systematically searched using a comprehensive search strategy to identify studies. A methodological framework for conducting scoping reviews was followed. An extraction form was developed to chart data and collate study characteristics and findings. Studies were then grouped into six categories: prevalence and characteristics; diagnosis validation and screening; knowledge, understanding and attitudes; help-seeking; experience of dementia; service organisation and delivery. RESULTS: A total of 6483 studies were identified, 27 studies were eligible for inclusion in the scoping review. We found that studies of prevalence, diagnosis and service organisation and delivery in UK South Asians are limited. We did not find any clinical trials of culturally appropriate interventions for South Asians with dementia in the UK. The existing evidence comes from small-scale service evaluations and case studies. CONCLUSIONS: This is the first scoping review of the literature to identify priority areas for research to improve care for UK South Asians with dementia. Future research should first focus on developing and validating culturally appropriate diagnostic tools for the UK South Asians and then conducting high-quality epidemiological studies in order to accurately identify the prevalence of dementia in this group. The cultural adaptation of interventions for dementia and testing in randomised controlled trials is also vital to ensure that there are appropriate treatments available for the UK South Asians to access.

Reporting of the translation and cultural adaptation procedures of the Addenbrooke's Cognitive Examination version III (ACE-III) and its predecessors: a systematic review.

BACKGROUND: The ACE-III, a gold standard for screening cognitive impairment, is restricted by language and culture, with no uniform set of guidelines for its adaptation. To develop guidelines a compilation of all the adaptation procedures undertaken by adapters of the ACE-III and its predecessors is needed. METHODS: We searched EMBASE, Medline and PsychINFO and screened publications from a previous review. We included publications on adapted versions of the ACE-III and its predecessors, extracting translation and cultural adaptation procedures and assessing their quality. RESULTS: We deemed 32 papers suitable for analysis. 7 translation steps were identified and we determined which items of the ACE-III are culturally dependent. CONCLUSIONS: This review lists all adaptations of the ACE, ACE-R and ACE-III, rates the reporting of their adaptation procedures and summarises adaptation procedures into steps that can be undertaken by adapters.