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BACKGROUND AND PURPOSE: The aim of this study was to examine the discriminative validity of the Brief Assessment of Impaired Cognition (BASIC) case-finding instrument in a general practice (GP) setting and compare it with other widely used brief cognitive instruments. METHODS: Patients aged ≥70 years were prospectively recruited from 14 Danish GP clinics. Participants were classified as having either normal cognition (n = 154) or cognitive impairment (n = 101) based on neuropsychological test performance, reported instrumental activities of daily living, and concern regarding memory decline. Comparisons involved the Mini-Mental State Examination (MMSE), the Montreal Cognitive Assessment (MoCA), the Rowland Universal Dementia Assessment Scale (RUDAS), the Mini-Cog, the 6-item Clock Drawing Test (CDT-6) and the BASIC Questionnaire (BASIC-Q). RESULTS: BASIC demonstrated good overall classification accuracy with an area under the receiver operating characteristic curve (AUC) of 0.88 (95% confidence interval [CI] 0.84-0.92), a sensitivity of 0.72 (95% CI 0.62-0.80) and a specificity of 0.86 (95% CI 0.79-0.91). Pairwise comparisons of the AUCs of BASIC, MMSE, MoCA and RUDAS produced non-significant results, but BASIC had significantly higher classification accuracy than Mini-Cog, BASIC-Q and CDT-6. Depending on the pretest probability of cognitive impairment, the positive predictive validity of BASIC varied from 0.83 to 0.36, and the negative predictive validity from 0.97 to 0.76. CONCLUSIONS: BASIC demonstrated good discriminative validity in a GP setting. The classification accuracy of BASIC is equivalent to more complex, time-consuming instruments, such as the MMSE, MoCA and RUDAS, and higher than very brief instruments, such as the CDT-6, Mini-Cog and BASIC-Q.
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OBJECTIVE: With increasing international migration, societies have become increasingly diverse worldwide. Although neuropsychological assessment is influenced by several diversity characteristics, language barriers have repeatedly been identified as one of the main challenges to cross-cultural neuropsychological assessment in migrant populations. Importantly, neuropsychologists are often required to conduct interpreter-mediated neuropsychological assessments without any graduate training or continuing education on the topic. To address this gap, the objective of this paper is to provide guidelines for interpreter-mediated neuropsychological assessment. METHOD: A European Consortium on Cross-Cultural Neuropsychology (ECCroN) task force conducted a conceptual literature review and provided recommendations for good practice and working principles to inform the preparation and administration of interpreter-mediated assessments. RESULTS: ECCroN takes the position that it is the responsibility of neuropsychologists, as well as the institutions or organizations that employ them, to ensure effective communication between themselves and their patients. This may be accomplished by preparing for an interpreter-mediated assessment by engaging an appropriate interpreter, which in most circumstances will be a professional in-person interpreter speaking the same language(s) or dialect(s) as the patient, and considering practical, language, and cross-cultural issues. During the assessment, reasonable steps should be taken to proactively manage the proceedings and adopt a communication style that facilitates effective patient-directed communication, and when interpreting test data and determining formulations and diagnoses, the limitations of interpreter-mediated assessment should be carefully considered. CONCLUSION: Adhering to the provided recommendations and working principles may help neuropsychologists provide competent interpreter-mediated neuropsychological assessments to linguistically diverse patients.
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OBJECTIVES: This study aims to evaluate the diagnostic accuracy and reliability of a new, brief questionnaire, 'Brief Assessment of Impaired Cognition- Questionnaire' (BASIC-Q) for detection of cognitive impairment, primarily developed for use in primary care. BASIC-Q has three components: Self-report, Informant report, and Orientation. Self-report and Orientation are completed by the individual and Informant report is answered by a close relative. METHODS: We included 275 participants ≥ 70 years, without a prior diagnosis of dementia, and with a close relative who agreed to participate as an informant. Participants were included prospectively in 14 general practices in urban and rural Denmark using a convenience sampling method. The Repeatable Battery for the Assessment of Neuropsychological Status (RBANS), the informant-completed Functional Activities Questionnaire (FAQ) and reported memory concern were used as a reference standard for the classification of the participants' cognitive function. RESULTS: BASIC-Q demonstrated a fair to good diagnostic accuracy to differentiate between people with cognitive impairment and normal cognition with an area under the ROC curve (AUC) of 0.84 (95% CI 0.79-0.89) and a sensitivity and specificity of 0.80 (95% CI 0.72-0.87) and 0.71 (95% CI 0.63-0.78). A prorated BASIC-Q score derived from BASIC-Q without Informant report had significantly lower classification accuracy than the full BASIC-Q. The test-retest reliability of BASIC-Q was good with an intraclass correlation coefficient of 0.84. CONCLUSION: BASIC-Q is a brief, easy-to-use questionnaire for identification of cognitive impairment in older adults. It demonstrated fair to good classification accuracy in a general practice setting and can be a useful case-finding tool when suspecting dementia in primary health care.
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Disfunción Cognitiva , Demencia , Humanos , Anciano , Demencia/diagnóstico , Reproducibilidad de los Resultados , Disfunción Cognitiva/diagnóstico , Encuestas y Cuestionarios , Sensibilidad y Especificidad , Atención Primaria de Salud , Pruebas NeuropsicológicasRESUMEN
BACKGROUND: Cognitive assessment for foreign-born individuals is suboptimal. The Multicultural Cognitive Examination (MCE) was developed for use in culturally, linguistically and educationally diverse populations. The MCE includes the Rowland Universal Dementia Assessment Scale (RUDAS) and performs assessment of memory, verbal fluency, and visuospatial function. OBJECTIVE: To compare the psychometric properties of the Swedish version of the Multicultural Cognitive Examination (MCE-S) with the Swedish versions of the RUDAS (RUDAS-S), the Mini-Mental State Examination (MMSE-SR), and the Clock Drawing Test (CDT), and to explore the ability of the MCE-S test to differentiate patients with and without dementia in a multicultural population. METHODS: 117 outpatients at four memory clinics were tested using the MCE-S to complement the routine cognitive assessment. RESULTS: Significant differences between patients with and without dementia were observed for all MCE-S components. There were significant differences between foreign-born and Swedish-born patients in the MMSE-SR, but not in the MCE-S or the RUDAS-S. The MCE-S, had good diagnostic performance for detecting dementia (AUC, 0.82), and was at least as good as the RUDAS-S alone (AUC, 0.79). The MCE-S also distinguished Alzheimer's disease (AD) from non-AD dementia. Contrary to expectations, the MCE-S was also at least as good as the MMSE-SR among the Swedish-born patients. CONCLUSIONS: The MCE-S is adequate for detecting dementia in both foreign-born and Swedish-born populations. Based on the cultural diversity of general society, adapted cognitive tests that can be used for everyone are practical and beneficial for both patients and health-care professionals. Further studies are needed within primary care.
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Trastornos del Conocimiento , Demencia , Humanos , Demencia/diagnóstico , Suecia , Trastornos del Conocimiento/diagnóstico , Pruebas Neuropsicológicas , Diversidad Cultural , CogniciónRESUMEN
OBJECTIVE: This study aimed to compare Greek Australian and English language normative data with regard to impairment rates yielded within a healthy Greek Australian older adult sample. We also examined whether optimal cut scores could be identified and capable of sensitively and specifically distinguishing between healthy Greek Australians from those with a diagnosis of Alzheimer's disease (AD). METHOD: Ninety healthy Greek Australian older adults and 20 demographically matched individuals with a diagnosis of AD completed a range of neuropsychological measures, including the Wechsler Adult Intelligence Scale-Fourth Edition, Greek Adaptation (WAIS-IV GR), verbal and visual memory, language and naming, and executive functions. Impairment rates derived from the use of either Greek Australian or English language normative data were calculated and compared, using a 1.5 standard deviation criterion to denote impairment. Receiver operating characteristics curve analysis was used to investigate the sensitivity and specificity of alternate cut scores. RESULTS: Impairment rates derived from the Greek Australian normative data showed that rates of impairment generally fell within the expected 7% range. In contrast, impairment rates for all tests derived using English language normative data were significantly higher and ranged from 11%-66%. Comparisons between healthy and AD participants with moderate dementia showed significant differences across all measures. Area under the curve results ranged from .721 to .999 across all measures, with most tests displaying excellent sensitivity and specificity. CONCLUSIONS: English language normative data were found to be inappropriate for use with Greek Australian elders, potentially leading to erroneous diagnostic outcomes. The use of minority group specific normative data and associated cut points appear to partially ameliorate this issue. Clinical implications are discussed alongside future research directions.
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Enfermedad de Alzheimer , Humanos , Anciano , Grecia , Australia , Enfermedad de Alzheimer/diagnóstico , Enfermedad de Alzheimer/psicología , Pruebas NeuropsicológicasRESUMEN
OBJECTIVE: Despite recent advances in cross-cultural neuropsychological test development, suitable tests for cross-linguistic assessment of language functions are not widely available. The aims of this study were to develop and validate a brief naming test, the Copenhagen Cross-Linguistic Naming Test (C-CLNT), for the assessment of culturally, linguistically, and educationally diverse older adult populations in Europe. METHOD: The C-CLNT was based on a set of standardized color drawings. Items for the C-CLNT were selected by considering name agreement and frequency across five European and two non-European languages. Ambiguities in some of the selected items and scoring criteria were resolved after pilot testing in 10 memory clinic patients. The final 30-item C-CLNT was validated by verifying its psychometric properties in 24 controls and 162 diverse memory clinic patients with affective disorder, mild cognitive impairment, and with dementia. RESULTS: The C-CLNT had acceptable scale reliability (coefficient alpha = .67) and good construct validity, with moderate to strong correlations with traditional language tests (r = .42- .75). Diagnostic accuracy for dementia was good and significantly better than that of the Boston Naming Test (areas under the curve of .80 vs .64, p < .001), but was poor for mild cognitive impairment. Only 3% of the variance in C-CLNT test scores was explained by immigrant background, while 6% was explained by age and years of education. In comparison, these proportions were 34 and 22% for the BNT. CONCLUSIONS: The C-CLNT has promising clinical utility for cross-linguistic assessment of naming impairment in culturally, linguistically, and educationally diverse older adults.
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Disfunción Cognitiva , Demencia , Humanos , Anciano , Reproducibilidad de los Resultados , Lingüística , Disfunción Cognitiva/diagnóstico , Lenguaje , Pruebas Neuropsicológicas , Demencia/diagnósticoRESUMEN
Frontotemporal dementia (FTD) is one of the leading causes of dementia before age 65 and often manifests as abnormal behavior (in behavioral variant FTD) or language impairment (in primary progressive aphasia). FTD's exact clinical presentation varies by culture, language, education, social norms, and other socioeconomic factors; current research and clinical practice, however, is mainly based on studies conducted in North America and Western Europe. Changes in diagnostic criteria and procedures as well as new or adapted cognitive tests are likely needed to take into consideration global diversity. This perspective paper by two professional interest areas of the Alzheimer's Association International Society to Advance Alzheimer's Research and Treatment examines how increasing global diversity impacts the clinical presentation, screening, assessment, and diagnosis of FTD and its treatment and care. It subsequently provides recommendations to address immediate needs to advance global FTD research and clinical practice.
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Enfermedad de Alzheimer , Demencia Frontotemporal , Humanos , Anciano , Demencia Frontotemporal/diagnóstico , Demencia Frontotemporal/terapia , Demencia Frontotemporal/psicología , Enfermedad de Alzheimer/diagnóstico , Enfermedad de Alzheimer/terapia , Pruebas Neuropsicológicas , Lenguaje , Europa (Continente)RESUMEN
INTRODUCTION: According to previous estimates, 40% of dementia cases globally may be attributed to 12 potentially modifiable risk factors. METHODS: We calculated national population attributable fractions (PAFs) for each risk factor and modeled the effects of proportional reductions in risk factor prevalence on dementia prevalence by calculating potential impact fractions (PIFs) for each factor. RESULTS: The overall adjusted PAF for all risk factors was 35.2%. Physical inactivity, hearing loss, hypertension, and obesity accounted for 64% of the total prevention potential. The overall adjusted PIF was 4.1% at 10% risk factor prevalence reduction and 8.1% at 20% risk factor reduction. DISCUSSION: Estimates of the potential for the prevention of dementia should be based on country-specific data on risk factor prevalence, as estimates based on global risk factor prevalence have limited relevance from a national perspective. Physical inactivity, hearing loss, hypertension, and obesity could be primary targets for prevention of dementia in Denmark. HIGHLIGHTS: Overall adjusted PAF for potentially modifiable dementia risk factors was 35%. Physical inactivity, hearing loss, hypertension, and obesity had the largest prevention potential. Estimates of prevention potential should be based on national risk factor prevalence.
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Demencia , Pérdida Auditiva , Hipertensión , Humanos , Factores de Riesgo , Obesidad/epidemiología , Obesidad/prevención & control , Hipertensión/epidemiología , Hipertensión/prevención & control , Demencia/epidemiología , Demencia/prevención & control , Pérdida Auditiva/epidemiología , Pérdida Auditiva/prevención & control , Dinamarca/epidemiologíaRESUMEN
The population of non- or low-literate adult immigrants studying a new language is large and growing in many countries. The aim of this study was to develop and validate a new instrument for the assessment of cognitive impairment that may hinder literacy learning in adult non- or low-literate L2 learners, the Cognitive Assessment of Literacy Learning Difficulties (CALL), in a language center setting. This was a case-control study in which the CALL was validated in adult non- or low-literate students, or students who were not literate in the Latin alphabet, in nine Danish language centers. Educator classification of students with very slow progression in learning basic Danish literacy was used as a benchmark for literacy learning difficulties. Classification was further based on the number of lessons participants had required to pass tests during Danish language program levels. An acceptable discriminative validity (AUC 0.76; specificity 0.94, sensitivity 0.64) for literacy learning difficulties (n = 32) versus schooling and sex matched control participants (n = 28) was found. In comparison, years of formal schooling had an AUC of 0.58. Age had a small effect on the ability of the CALL to predict literacy learning difficulties (OR = 1.097, p = 0.013), whereas sex and years of schooling did not. CALL was found to be a valid instrument for identification of cognitive impairment that may hinder literacy learning in adult non- or low-literate L2 learners in a Danish language center setting.
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Lenguaje , Alfabetización , Humanos , Adulto , Estudios de Casos y Controles , Escolaridad , CogniciónRESUMEN
OBJECTIVE: To examine the clinical utility of Wechsler Adult Intelligence Scale-IV (WAIS-IV) Matrix Reasoning in limited educated recently arrived immigrants in Denmark. METHOD: Participants were 64 limited educated (0-9 years' education) independently living adult immigrants primarily from Middle Eastern and Sub-Saharan African countries who completed WAIS-IV Matrix Reasoning as well as demographic, and medical questionnaires. RESULTS: Thirty-eight participants (59%) scored more than two standard deviations below the Scandinavian mean (scaled score < 4). Performances were significantly associated with years of education but not with occupational status, years of residence in Denmark, or Danish language skills. The most common error types were repetition errors (15.84%) and incomplete correlate errors (10.47%), with a strong trend for a higher proportion of repetition errors in participants with <5 years of education. CONCLUSIONS: The findings indicate that WAIS-IV Matrix Reasoning underestimates cognitive functioning in limited educated recently arrived immigrants, thus calling its clinical utility into question.
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Trastornos del Conocimiento , Solución de Problemas , Adulto , Humanos , Escalas de Wechsler , Pruebas Neuropsicológicas , Cognición , Trastornos del Conocimiento/psicologíaRESUMEN
AIMS: Visuospatial skills are frequently assessed with drawing tests. Research has suggested that the use of drawing tasks in low educated groups may lack the ability to discriminate healthy individuals from clinical populations. The aims of this study were to investigate the validity of visuoconstructional tests in a sample of older Greek Australian immigrants and compare their performances to a matched sample of patients with Alzheimer's disease (ad). METHOD: We assessed visuoconstructional performances in a sample of 90 healthy older Greek Australians, with a primary school level of education, and compared performances to a demographically matched sample of 20 Greek Australians with a diagnosis of ad on four visuoconstructional drawing tests: Greek cross, four-pointed star, intersecting pentagons, and the Necker Cube. RESULTS: While healthy participants tended to outperform the ad group on most copy tasks, high fail rates within the healthy sample were observed for the intersecting pentagons and Necker cube (78% and 73% fail rates, respectively) when using established clinical cut-off scores. High rates of curved angle, omission, distorted relation between elements, spatial disorganization and three-dimensional design errors were found across the four-pointed star, intersecting pentagons, and the Necker cube in both healthy participants and those with ad. Exploratory receiver operating characteristic curve analysis revealed that, with perhaps the exception of the Greek cross, meaningful sensitivity and specificity could not be reached for the four-pointed star, intersecting pentagons, and Necker cube. CONCLUSION: Cognitively healthy immigrants with low education appear to be at a disadvantage when completing visuoconstructional drawing tests, as their performance may be misinterpreted as indicating cognitive impairment. Future research is needed to identify alternative approaches to assess visuoconstructional ability in culturally and linguistically diverse older cohorts with limited education.
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Enfermedad de Alzheimer , Disfunción Cognitiva , Procesamiento Espacial , Anciano , Humanos , Enfermedad de Alzheimer/diagnóstico , Australia/epidemiología , Disfunción Cognitiva/diagnóstico , Grecia/etnología , Pruebas Neuropsicológicas , Emigrantes e Inmigrantes/psicología , Emigrantes e Inmigrantes/estadística & datos numéricos , ArteRESUMEN
Due to increasing cultural, linguistic, and educational diversity in older populations across Europe, accurate assessment of cognitive functioning in people from diverse backgrounds becomes increasingly important. This paper aims to provide a state-of-the-art review of cognitive assessment in culturally, linguistically, and educationally diverse older populations in Europe, focusing on challenges and recent advances in cross-cultural assessment. Significant work has been carried out on the identification of challenges in cognitive assessment in culturally, linguistically, and educationally diverse older populations and on development and validation of cross-cultural cognitive tests. Most research has addressed the influences of language barriers, education and literacy, and culture and acculturation and in particular, the European Cross-Cultural Neuropsychological Test Battery (CNTB) and the Rowland Universal Dementia Assessment Scale (RUDAS) are well-validated across European countries. However, cross-cultural cognitive assessment is largely still a developing field in Europe, and there is a continuing need for developments within the field.
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Cognición , Alfabetización , Humanos , Anciano , Pruebas Neuropsicológicas , Europa (Continente) , Escolaridad , Diversidad CulturalRESUMEN
BACKGROUND: The number of people with a migration background and dementia is increasing in Europe. All patients with suspected dementia have the right to an appropriate cognitive assessment and correct diagnosis for optimal treatment and support. Rowland Universal Dementia Assessment Scale (RUDAS) cognitive screening instrument is less affected by language, culture, and educational background, and adapted for use in multicultural populations. OBJECTIVE: To compare the diagnostic accuracy of RUDAS-S to the Swedish version of Mini-Mental State Examination (MMSE-SR) for detecting dementia in a multicultural group of outpatients in Swedish memory clinics. METHODS: We tested 123 outpatients (36 nonnative Swedish), in 4 memory clinics in Southern Sweden with RUDAS-S to supplement the usual cognitive assessment. RESULTS: RUDAS-S had moderate to good diagnostic performance for detecting dementia in a multicultural population in Sweden, with an area under the receiver operating characteristic curve (AUC) of 0.81. At a cutoff score <25 its sensitivity was 0.92, specificity 0.60, and accuracy 76%. The AUC for the MMSE-SR was 0.79. At a cutoff score <23 its sensitivity was 0.65, specificity 0.81, and accuracy 73%. CONCLUSION: RUDAS-S is at least as accurate as MMSE-SR for detecting dementia in memory clinics in Sweden and can be used for all patients undergoing a cognitive assessment, irrespective of their cultural, language, and educational background. However, there is a need for other cross-cultural cognitive tests to complement RUDAS-S to extend cognitive examination.
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Demencia , Lenguaje , Cognición , Demencia/diagnóstico , Humanos , Pruebas Neuropsicológicas , Sensibilidad y Especificidad , SueciaRESUMEN
OBJECTIVES: Proactive efforts that take language and cultural barriers into consideration may be needed to raise awareness of dementia and improve access to services in minority ethnic communities. The aim of this study was to assess the feasibility of a culturally tailored dementia information program and the immediate effects on participants' intention to seek help for memory problems, their knowledge and beliefs about dementia, and their knowledge about options for support. METHODS: A novel dementia information program, consisting of one 2-h session, was developed through a collaborative research process with primary care dementia coordinators and multicultural link workers as co-researchers. It provides basic knowledge about dementia to minority ethnic communities and can be delivered in a community setting by non-specialists. RESULTS: Six information program sessions were conducted with a total of 110 participants; 65 Turkish, 19 Pakistani, 20 Arabic-speaking, and 6 with another minority ethnic heritage. The program had a significant effect on participants' immediate knowledge and beliefs about dementia as measured with a quiz (z = -2.02, p = 0.04, d = 0.90). In a post-program focus group meeting, facilitating multicultural link workers reported satisfaction with facilitator training, adopted recruitment strategies, and content and delivery of the information sessions and provided feedback on improving the program. CONCLUSIONS: The results provide support for the feasibility of the culturally tailored dementia information program. The program has the potential to improve knowledge and beliefs about dementia and options for formal support in minority ethnic communities and seems easily implemented in existing services, and at a low cost.
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Demencia , Grupos Minoritarios , Demencia/terapia , Dinamarca , Etnicidad , Estudios de Factibilidad , HumanosRESUMEN
BACKGROUND: There is a growing number of people with dementia in minority ethnic groups in Denmark. Support for the increasing number of family carers from minority ethnic groups is crucial, as caring for a relative with dementia may negatively affect the carer's health and quality of life. The aim of this study was to determine the feasibility of a personalized intervention for family carers from minority ethnic groups. The intervention was a modified version of a culturally sensitive case-management program developed in Australia which had been shown to improve carers' sense of competence in managing dementia and their mental well-being. METHODS: A small pilot trial was used to examine the feasibility and preliminary efficacy of the intervention. Feasibility indicators included data on recruitment, retention, adherence, and fidelity. Acceptability and suitability of the intervention was explored in post-intervention interviews with family carers, and baseline and follow-up scores for outcome measures were examined. RESULTS: Ten (30%) of 33 eligible family carers consented to participate in the study, but three were lost to follow-up and seven (70%) family carers completed the trial. Intervention fidelity, acceptance, and satisfaction were high. Results for outcome measures indicated that the intervention may improve family carers' sense of competence by helping them cope better with challenges relating to caring and managing dementia and improved their satisfaction with primary care services. CONCLUSIONS: The results suggest that the intervention is feasible and worth exploring for family carers of people with dementia from minority ethnic groups in Denmark.
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Cuidadores , Demencia , Dinamarca , Etnicidad , Humanos , Proyectos Piloto , Calidad de VidaRESUMEN
Over the past decades European societies have become increasingly diverse. This diversity in culture, education, and language significantly impacts neuropsychological assessment. Although several initiatives are under way to overcome these barriers - e.g. newly developed and validated test batteries - there is a need for more collaboration in the development and implementation of neuropsychological tests, such as in the domains of social cognition and language.To address these gaps in cross-cultural neuropsychological assessment in Europe, the European Consortium on Cross-Cultural Neuropsychology (ECCroN) was established in 2019.ECCroN recommends taking a broad range of variables into account, such as linguistic factors, literacy, education, migration history, acculturation and other cultural factors. We advocate against race-based norms as a solution to the challenging interpretation of group differences on neuropsychological tests, and instead support the development, validation, and standardization of more widely applicable/cross-culturally applicable tests that take into account interindividual variability. Last, ECCroN advocates for an improvement in the clinical training of neuropsychologists in culturally sensitive neuropsychological assessment, and the development and implementation of guidelines for interpreter-mediated neuropsychological assessment in diverse populations in Europe.ECCroN may impact research and clinical practice by contributing to existing theoretical frameworks and by improving the assessment of diverse individuals across Europe through collaborations on test development, collection of normative data, cross-cultural clinical training, and interpreter-mediated assessment.
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Comparación Transcultural , Neuropsicología , Europa (Continente) , Humanos , Lenguaje , Pruebas NeuropsicológicasRESUMEN
BACKGROUND: Although minority ethnic families have a lower uptake of dementia care services, little research has explored how minority ethnic carers cope with and manage dementia care in their everyday lives. The aim of this study was to investigate organization of family dementia care in Turkish, Pakistani, and Arabic speaking minority ethnic families from the perspective of family carers, primary care dementia coordinators, and multicultural link workers in Denmark. METHODS: Semi-structured qualitative individual and group interviews with minority ethnic family carers, primary care dementia coordinators, and multicultural link workers. Hermeneutic phenomenology was used as theoretical framework and results were analyzed using thematic analysis. RESULTS: A total of 21 individual and four group interviews were conducted, including a total of 30 participants. A key finding was that the care responsibility was usually shared between several family members, who took turns to provide 24-hour care for the person with dementia. Rotational 24-hour care, either by having the person with dementia live with different family members or by having different family members take turns to move in with the person with dementia, emerged as a common alternative to formal care. Another important finding was that despite decreasing the burden of care of individual family carers, rotational care could be confusing and stressful to the person with dementia and could have a negative impact on the quality of life of all involved. CONCLUSION: The way minority ethnic families organize dementia care have implications for understanding and communicating about support needs. Higher reliance on shared family care should not be taken to indicate that minority ethnic communities are not in need of support from formal services.
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Cuidadores/psicología , Asistencia Sanitaria Culturalmente Competente , Demencia , Etnicidad , Adaptación Psicológica , Adulto , Anciano , Demencia/terapia , Femenino , Humanos , Masculino , Persona de Mediana Edad , Grupos Minoritarios , Investigación Cualitativa , Calidad de VidaRESUMEN
OBJECTIVE: Assessment of individuals from diverse ethnic backgrounds is a major challenge in current clinical neuropsychology as most neuropsychological tests are biased by linguistic, educational, and cultural differences. The aim of this study was to examine the effects of acculturation on the newly developed European Cross-Cultural Neuropsychological Test Battery. METHOD: The study was a cross-sectional study carried out in Copenhagen, Denmark. Neuropsychological test performances of a Danish sample were compared to a culturally and linguistically diverse sample, and the effects of a number of acculturation variables were assessed using group comparisons, correlation analyses, and regression analyses. RESULTS: A total of 152 participants were included in the study: 26 were native-born monolingual Danes and 126 had culturally and linguistically diverse backgrounds: 66 were immigrants from Turkey, 41 from Poland, and 19 from former Yugoslavia. In direct comparison, the only significant difference between the Danish and culturally and linguistically diverse samples was found on Animal Fluency. However, within the culturally and linguistically diverse sample, higher and lower acculturated groups significantly differed on several measures. The main associations between neuropsychological test performance and acculturation variables were found on measures loading on processing speed and executive function. CONCLUSIONS: Overall, only limited effects of acculturation were found on the European Cross-Cultural Neuropsychological Test Battery. However, administering cross-cultural measures in the preferred language may not be sufficient to resolve challenges in cross-cultural assessment of processing speed and executive function as concept of speed and speeded performance is highly culture dependent.
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Aculturación , Comparación Transcultural , Estudios Transversales , Dinamarca , Humanos , Pruebas NeuropsicológicasRESUMEN
OBJECTIVES: To explore barriers in access to dementia care in Turkish, Pakistani and Arabic speaking minority ethnic groups in Denmark. METHOD: Semi-structured qualitative individual- and group interviews with minority ethnic family carers, primary care dementia coordinators, staff in elderly daycare, and multicultural link workers. Hermeneutic phenomenology was used as theoretical framework. RESULTS: A total of 21 individual- and 6 group interviews were conducted, including a total of 35 participants. On the service user side, barriers in access to dementia care were related to lacking language proficiency and strong cultural norms, including familial responsibility for the care of older family members and stigma associated with mental illness and dementia. On the care provider side, the available formal services were rarely tailored to the specific needs of minority ethnic service users and were often considered inadequate or unacceptable. CONCLUSION: Care practices and perceived consequences of dementia in minority ethnic communities were heavily influenced by cultural factors leading to a number of persisting barriers to accessing dementia care services. There is a simultaneous need to raise awareness about dementia and the existence of dementia care services in minority ethnic groups, to reduce stigma, and to develop culturally appropriate dementia care options.
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Demencia , Etnicidad , Anciano , Demencia/terapia , Dinamarca , Accesibilidad a los Servicios de Salud , Humanos , Grupos Minoritarios , Investigación CualitativaRESUMEN
BACKGROUND AND PURPOSE: Careful counseling through the diagnostic process and adequate postdiagnostic support in patients with mild cognitive impairment (MCI) is important. Previous studies have indicated heterogeneity in practice and the need for guidance for clinicians. METHODS: A joint European Academy of Neurology/European Alzheimer's Disease Consortium panel of dementia specialists was appointed. Through online meetings and emails, positions were developed regarding disclosing a syndrome diagnosis of MCI, pre- and postbiomarker sampling counseling, and postdiagnostic support. RESULTS: Prior to diagnostic evaluation, motives and wishes of the patient should be sought. Diagnostic disclosure should be carried out by a dementia specialist taking the ethical principles of "the right to know" versus "the wish not to know" into account. Disclosure should be accompanied by written information and a follow-up plan. It should be made clear that MCI is not dementia. Prebiomarker counseling should always be carried out if biomarker sampling is considered and postbiomarker counseling if sampling is carried out. A dementia specialist knowledgeable about biomarkers should inform about pros and cons, including alternatives, to enable an autonomous and informed decision. Postbiomarker counseling will depend in part on the results of biomarkers. Follow-up should be considered for all patients with MCI and include brain-healthy advice and possibly treatment for specific underlying causes. Advice on advance directives may be relevant. CONCLUSIONS: Guidance to clinicians on various aspects of the diagnostic process in patients with MCI is presented here as position statements. Further studies are needed to enable more evidence-based and standardized recommendations in the future.