The challenges of achieving timely diagnosis and culturally appropriate care of people with dementia from minority ethnic groups in Europe

Gove, Dianne; Nielsen, T. Rune; Smits, Carolien; Plejert, Charlotta; Rauf, Mohammed Akhlak; Parveen, Sahdia; Jaakson, Siiri; Golan-Shemesh, Daphna; Lahav, Debi; Kaur, Ripaljeet; Herz, Michal Karen; Thyrian, Jochen René; Georges, Jean

doi:10.1002/gps.5614

Cited by 27 publications

(35 citation statements)

References 37 publications

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“…In this regard, the proportion of Italian CCDDs using interpreters (10.5%) was found to be markedly lower than that documented in two previous surveys of dementia services conducted in 15 European countries (44%–56% of services) [12] and in the UK (65% of services) [32]. It is also important that CCDDs provide information material, possibly culturally adapted and translated into the main languages spoken by migrants living in Italy, to raise awareness about dementia, fight stigma and negative stereotypes, and enhance health literacy among diverse individuals [9,10].…”

Section: Discussionmentioning

confidence: 94%

“…The occurrence of cognitive disturbances in migrants poses additional challenges to the diagnostic approach and provision of care. Language difficulties, low education, and poor health literacy can postpone help‐seeking and constitute significant barriers to diagnosis [9,10]. The cognitive assessment can be biased by the limited availability of culture‐sensitive tests and normative data as well as by the difficulty of resorting to cultural mediators and interpreters [11,12].…”

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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A nationwide survey of Italian Centers for Cognitive Disorders and Dementia on the provision of care for international migrants

Canevelli

Cova

Remoli

et al. 2022

Euro J of Neurology

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Background More than 500,000 dementia cases can be estimated among migrants living in Europe. There is the need to collect “real world” data on the preparedness of healthcare services to support the inclusion of migrants in the public health response to dementia. The present study aimed (i) to estimate the number of migrants referred to Italian memory clinics (Centers for Cognitive Disorders and Dementia [CCDDs]) and (ii) to identify possible barriers and resources for the provision of diversity‐sensitive care. Methods A survey of all Italian CCDDs was conducted between December 2020 and April 2021. An online questionnaire was developed to obtain information on the number of migrants referred to Italian CCDDs in 2019, the challenges encountered in the diagnostic approach, and possible facilitators in the provision of care. Results Overall, 343 of the 570 contacted CCDDs completed the survey questionnaire (response rate: 60.2%). Nearly 4527 migrants were referred to these services in 2019. Migrants accounted for a median 1.1% (IQR: 0.9%–2.8%) of overall CCDD referrals. More than one‐third of respondents reported that the number of migrants referred to their facilities had increased in the last 5 years. The overall quality of the migrants' cognitive assessment was deemed to be very poor or insufficient in most cases. A minority of CCDDs had translated information material on dementia and reported the possibility to contact cultural mediators and interpreters. Conclusions A relevant number of migrants are being referred to Italian CCDDs that are still not adequately prepared to deliver diversity‐sensitive care and support.

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Section: Discussionmentioning

confidence: 94%

Section: Introductionmentioning

confidence: 99%

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A nationwide survey of Italian Centers for Cognitive Disorders and Dementia on the provision of care for international migrants

Canevelli

Cova

Remoli

et al. 2022

Euro J of Neurology

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“…There are challenges for early and reliable diagnosis in people with a migration background. These challenges may be due to, for example, language barriers, cultural differences, and the use of conventional cognitive tests [4,8].…”

Section: Challengesmentioning

confidence: 99%

“…Foreign born patients seek care for memory disorders to a lesser extent than native born patients [8],…”

Section: Logistic Regressionmentioning

confidence: 99%

Diagnostic Accuracy of the Swedish Version of the Rowland Universal Dementia Assessment Scale (RUDAS-S) for Multicultural Cognitive Screening in Swedish Memory Clinics

Torkpoor

Frolich

Nielsen

et al. 2022

JAD

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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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The structural and social determinants of Alzheimer's disease related dementias

Adkins‐Jackson

George

Besser

et al. 2023

Alzheimer's & Dementia

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Introduction The projected growth of Alzheimer's disease (AD) and AD‐related dementia (ADRD) cases by midcentury has expanded the research field and impelled new lines of inquiry into structural and social determinants of health (S/SDOH) as fundamental drivers of disparities in AD/ADRD. Methods In this review, we employ Bronfenbrenner's ecological systems theory as a framework to posit how S/SDOH impact AD/ADRD risk and outcomes. Results Bronfenbrenner defined the “macrosystem” as the realm of power (structural) systems that drive S/SDOH and that are the root cause of health disparities. These root causes have been discussed little to date in relation to AD/ADRD, and thus, macrosystem influences, such as racism, classism, sexism, and homophobia, are the emphasis in this paper. Discussion Under Bronfenbrenner's macrosystem framework, we highlight key quantitative and qualitative studies linking S/SDOH with AD/ADRD, identify scientific gaps in the literature, and propose guidance for future research. Highlights Ecological systems theory links structural/social determinants to AD/ADRD. Structural/social determinants accrue and interact over the life course to impact AD/ADRD. Macrosystem is made up of societal norms, beliefs, values, and practices (e.g., laws). Most macro‐level determinants have been understudied in the AD/ADRD literature.

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The challenges of achieving timely diagnosis and culturally appropriate care of people with dementia from minority ethnic groups in Europe

Cited by 27 publications

References 37 publications

A nationwide survey of Italian Centers for Cognitive Disorders and Dementia on the provision of care for international migrants

A nationwide survey of Italian Centers for Cognitive Disorders and Dementia on the provision of care for international migrants

Diagnostic Accuracy of the Swedish Version of the Rowland Universal Dementia Assessment Scale (RUDAS-S) for Multicultural Cognitive Screening in Swedish Memory Clinics

The structural and social determinants of Alzheimer's disease related dementias

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