BackgroundThe 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.MethodsWe 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.ResultsWe deemed 32 papers suitable for analysis. 7 translation steps were identified and we determined which items of the ACE-III are culturally dependent.ConclusionsThis 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.

ObjectiveOver 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.MethodDatabases 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.ResultsA 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.ConclusionsThis 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.

ObjectivesOur 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.MethodWe 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.ResultsWe 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.ConclusionOur 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.

Background: We aimed to devise a methodology on developing and implementing guidelines for culturally adapting any cognitive test. We demonstrated this through developing guidelines for culturally adapting the Addenbrooke’s Cognitive Examination Version III (ACE-III) and utilising them to develop an ACE-III Urdu for a British South Asian population. Methods: We had a several stage qualitative study. We collated information from our systematic review on the translation and cultural adaptation of the ACE-III and its predecessors, and feedback from previous adaptors of the ACE-III to identify steps for cultural adaptation. We formatted these into question-by-question guidelines. These guidelines were used with feedback from focus groups with cognitively healthy older British South Asians and a consensus meeting with relevant experts, to develop an ACE-III Urdu. Results: Our systematic review found 32 adaptations and we received feedback from seven adaptors to develop guidelines for culturally adapting the ACE-III. Through the use of these guidelines, two focus groups with 12 participants, and a consensus meeting of two psychiatrists with a South Asian background and familiarity with cognitive assessments and cultural adaptation, the ACE-III Urdu was developed. Conclusions: We developed a set of guidelines for culturally adapting the ACE-III that can be used by future adapters 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 culturally adapt the measure.

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.

BackgroundCurrent literature highlights higher prevalence rates of sleep difficulties amongst adults with an intellectual disability. However, no synthesis has been conducted to assess the effectiveness of existing interventions in this population. Thus, the aim of this review was to assess the effectiveness of sleep interventions in adults with an intellectual disability (ID).MethodEight databases were searched to identify interventions for sleep difficulties amongst adults with an ID. The study quality was assessed with the Risk Of Bias In Non‐randomised Studies – of Interventions. Nine studies (n = 97) were eligible for inclusion in the review.ResultsThere was a notable study on heterogeneity in terms of the population, study design, intervention studied, sleep assessment and outcome assessments used. Eight of the nine studies reported improvement in sleep following intervention. However, these findings need additional support as only 97 participants involving a variety of interventions and measurement systems were used across all studies. Furthermore, eight of the nine studies had serious to critical risk of bias. The only study identified as having low risk of bias was a placebo‐controlled randomised controlled trial for the use of melatonin.ConclusionsThis review highlights the need for objective measures such as actigraphy and studies with greater experimental control investigating sleep interventions in adults with ID.

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.

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.