In 24 of 31 EU countries (77.5 percent) and three of four EFTA countries, there are documents at the national level with recommendations, guidelines, or policies for the care of PwD. The 27 EU and EFTA countries have a total of 43 documents. Most of these are guidelines (30). Only three countries (Scotland, Norway, and Switzerland) have policies. In addition, seven recommendations for action and three reports/strategies were taken into account. Eight countries (Greece, Italy, Croatia, Liechtenstein, Lithuania, Cyprus, Slovakia, and Poland) have no such documents (Table 1). Fifteen documents from 11 EU countries (Belgium/Flanders, Denmark, Germany, England, Ireland, Northern Ireland, Austria, Scotland, Sweden, Spain, and Wales) and the EFTA country Norway consider the topic of migration. Twenty-eight documents from 13 EU and two EFTA countries do not refer to it. Norway and Sweden have a chapter on migration (Table 2). Most other countries refer only briefly with individual sentences or short sections to specific aspects of this topic. In addition to country-specific differences, there are document type-specific differences. While none of the three reports/strategies refers to migration, two of seven recommendations, 11 of 30 guidelines and two of three policies have a reference.
[Table 1 near here]
Table 2: Reference of the national dementia care guidelines of the EU/EFTA countries to migration
Countries
|
Migration reference of national guidelines
|
Subthemes related to migration
|
Migrant-related needs, services, and recommendations for action
|
Reference to migration
|
Chapter on migration
|
Needs
|
Dementia diagnosis
|
Care
|
Care-inequalities
|
Service access
|
Utilization of formal services
|
Care barriers
|
Suitability screening tests
|
Identification of special needs
|
Specific services available
|
Recommendations for action
|
Norway
|
Х
|
Х
|
Х
|
Х
|
Х
|
Х
|
Х
|
Х
|
Х
|
Х
|
Х
|
Х
|
Х
|
Sweden
|
Х
|
Х
|
Х
|
Х
|
Х
|
Х
|
Х
|
Х
|
Х
|
Х
|
Х
|
Х
|
Х
|
Northern Ireland
|
Х
|
―
|
Х
|
Х
|
Х
|
Х
|
Х
|
Х
|
Х
|
Х
|
Х
|
―
|
Х
|
Spain
|
Х
|
―
|
Х
|
Х
|
Х
|
Х
|
―
|
Х
|
Х
|
Х
|
Х
|
―
|
Х
|
Scotland
|
Х
|
―
|
Х
|
Х
|
Х
|
Х
|
Х
|
―
|
Х
|
―
|
Х
|
―
|
Х
|
Belgium (Flanders)
|
Х
|
―
|
Х
|
―
|
Х
|
Х
|
Х
|
―
|
Х
|
―
|
Х
|
―
|
Х
|
England, Wales
|
Х
|
―
|
―
|
Х
|
Х
|
Х
|
Х
|
―
|
―
|
Х
|
―
|
―
|
Х
|
Denmark
|
Х
|
―
|
Х
|
Х
|
―
|
―
|
―
|
―
|
―
|
Х
|
Х
|
Х
|
―
|
Germany
|
Х
|
―
|
―
|
Х
|
―
|
―
|
―
|
―
|
Х
|
―
|
―
|
―
|
Х
|
Austria
|
Х
|
―
|
―
|
Х
|
―
|
―
|
―
|
―
|
―
|
Х
|
―
|
―
|
―
|
Ireland
|
Х
|
―
|
―
|
Х
|
―
|
―
|
―
|
―
|
―
|
Х
|
―
|
―
|
―
|
Bulgaria
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
Estonia
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
Finland
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
France
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
Iceland
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
Latvia
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
Luxembourg
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
Malta
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
Netherlands
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
Portugal
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
Romania
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
Switzerland
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
Slovenia
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
Czech Republic
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
Hungary
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
―
|
Overview of country-specific guidelines and policies
Austria: The medical guideline for integrated care for dementia patients from 2011 notes that neuropsychological tests for differential diagnosis must take into account a person's sociocultural background and language skills. Furthermore, reference is made to the Mini-Cog-Screening-Test, whose significance is not affected by linguistic and cultural differences [30].
Belgium (Flanders): The Memorandum from 2019 states that the number of older people with an Italian, Moroccan or Turkish background is increasing [31]. The reference framework for quality of life, housing and care for people with dementia from 2018 explains that the increasing diversity in Western societies poses challenges for caregivers. Cultural and ethnic background affects the view of dementia and which aspects of care are considered important. In some cultures, dementia is strongly tabooed. People from these cultures need to be better informed and their awareness of dementia should be increased. Current care services for migrants offered by nursing homes are inadequate. Therefore, nursing homes are recommended to take into account the culture-specific needs of PwM without falling into stereotyping and overculturalization [32].
Denmark: The policy on the diagnosis and treatment of dementia from 2013 and the policy on the diagnosis of mild cognitive impairment and dementia from 2018 describe the problem of linguistic and cultural differences complicating the diagnosis of people from certain ethnic groups and note that the number of older people from non-Western countries is increasing. The screening tool RUDAS (Rowland Universal Dementia Assessment Scale) has been validated for PwM [33].
England and Wales: The NICE Guideline Assessment for management and support for people living with dementia and their carers from 2018 indicates that people from minority ethnic groups have less access to health and social services. In addition, some diagnostic tools are not appropriate for cultural differences and language deficits, leading to biased outcomes among certain population groups. Health and social service providers are recommended to consider the appropriateness of cultural and linguistic differences when selecting diagnostic tests. In general, service providers should design their services to be accessible to people from ethnic minorities [34]
Germany: According to the S-3 guideline from 2016, a person's sociocultural background and language competence can influence the results of diagnostic tests for dementia. It is recommended that neuropsychological tests for differential diagnosis of questionable or mild dementia take into account a person's sociocultural background and language skills [35].
Ireland: The Dementia - Diagnosis and Management in General Practice guideline from 2019 identifies the problem in which a person's cultural background can affect their performance in cognitive impairment screening tests. Two instruments are mentioned that are particularly appropriate for ethnic minorities, the MIS (Memory Impairment Screen) and the Mini-Cog Screening Test [36].
Northern Ireland: The NICE-SCIE Guideline on supporting people with dementia and their carers in health and social care from 2007 identifies people from black and ethnic minority communities as a group with special linguistic, cultural, religious and spiritual needs. It classifies ethnic minorities as a risk group for underdiagnosis and a lower level of care. Causes are communication difficulties, culturally and linguistically inadequate care, stigmatization, family pressure, and a lack of knowledge about care options. In addition, non-native English-speaking people are identified as vulnerable to the effects of dementia, and people from Africa, the Caribbean, and Asia are identified as a risk group for dementia. Care providers are recommended to develop special support services, special information material and culturally oriented training for ethnic minorities. With regard to dementia screening tests for non-native speakers and language barriers, the use of independent interpreters and the provision of information in the preferred language are recommended [37].
Norway: The Professional Policy for Dementia from 2017 attributes special needs (other ideals, ideas, and desires regarding information and self-determination) to people with minority backgrounds and considers them vulnerable to misdiagnosis of dementia and lower utilization of healthcare services. The central problem identified is that the cultural and linguistic background of immigrants complicates diagnosis and that existing cognitive tests are not suitable as assessment tools for this population. Therefore, the use of the intercultural screening test RUDAS is recommended for this group, as well as an extended assessment by the specialist medical service and a neuropsychological examination. In addition, the Ministry of Health and the Competence Center for Migrant and Minority Health (NAKMI) has published information on dementia in four different languages (Norwegian, English, Polish, and Urdu) and a brochure on interpreters in the health system [38].
Scotland: The Dementia Care Standards from 2011 note that language, cultural and ethnic barriers pose a challenge to communication in dementia treatment. The diagnostic tools are based on the needs of the majority population. Ethnic minority groups do not receive special attention in dementia diagnostics. National care services should ensure that PwD from black and ethnic minority groups are given timely access to the assessment of cognitive impairments. In addition, communication and language support should be offered in the case of language, cultural and knowledge barriers [39].
Spain: The Clinical Practice Guideline on the Comprehensive Care of People with Alzheimer's Disease and other Dementias from 2009 states that cultural differences and language barriers have an impact on diagnosis, opportunities for health and social care, participation in support services and the risk of abuse related to dementia. It notes that PwD from other cultural and religious groups have special needs and that dementia care is increasingly provided by carers with migration backgrounds. It recommends the development of individual information services with consideration of culture, religion and ethnic origin as well as communication support by a cultural mediator in case of language barriers [40].
Sweden: The Dementia Care Policy from 2017 describes the right to individually and linguistically adapted information about health status and available care services for linguistic minorities. Furthermore, it recommends that stationary facilities design the physical environment of residents with dementia according to their cultural and religious needs [41]. The 2018 evaluated version of the policy points to the lower chances of early detection and the lack of appropriate drug treatment and specific care services (daycare, home care, and family care) for people with different language or cultural backgrounds. People born abroad benefit less from community support than people born in Sweden. Districts and municipalities are recommended to work more actively to diagnose dementia in people from other countries and to gain more knowledge about the examination and treatment of dementia in this group. Sweden has validated the RUDAS assessment tool for linguistic and cultural minorities and developed a training program for the use of this tool. Currently, approximately half of the Swedish districts use RUDAS [42].
Comparisons between countries
The focus of the national documents of the EU and EFTA states on the care of PwM with dementia is on early detection and diagnosis. Only Belgium (Flanders) does not take this topic into account. The main problem, identified is that the cultural background and language skills of PwM can influence the results of dementia diagnostic tests. Consequently, the focus in most countries (9 out of 12) is on the suitability of cognitive screening tools for minority groups. Norway, Northern Ireland, England, Wales, and Spain report that standardized cognitive tests such as the MMSE (Mini-Mental State Examination) or the clock test are not suitable for people with a different linguistic or cultural background. Ireland and Austria refer to cognitive screening tests such as the MIS and the Mini-Cog Screening Test, which are less prone to linguistic and cultural influences. Norway, Sweden, and Denmark point to the validity of RUDAS for people with a different linguistic or cultural background. The second central topic is the existence of care inequalities between ethnic minorities and the majority population (in 8 of 12 countries). Norway and Sweden note that PwM use fewer formal healthcare services (primary healthcare services, community support services, inpatient care services). In seven countries, the access of PwM with dementia to healthcare services is being discussed. Some countries report that PwM or ethnic minorities have less access to adequate healthcare services, and they have fewer chances of early detection and appropriate drug treatment. Six countries point to care barriers such as stereotyping or linguistic, cultural, and ethnic barriers. As a result, PwM are mentioned by several countries as a risk group for lower use of care and underdiagnosis. Seven countries identify the specific needs of PwM. They refer to a different perspective on dementia, different preferences for care and other ideals, ideas, and desires regarding information and self-determination.
Nine countries provide recommendations for the care of PwM with dementia. Norway, Sweden, Germany, England, and Wales recommend that the linguistic and cultural background of people should be taken into account when selecting diagnostic test procedures. Norway, Sweden, Northern Ireland, and Spain recommend that care providers offer specific support and information to PwD and their ethnic minority relatives, taking into account their cultural, religious, and linguistic needs. Norway, Northern Ireland, and Spain note that information in the preferred language and an independent interpreter should be offered to PwD and their carers in case of language barriers. Currently, only Norway, Sweden, and Denmark have specific healthcare services at the national level for PwM with dementia (Figure 1). Norway has published a brochure on interpreters and informational material on dementia in four different languages (Norwegian, English, Polish, and Urdu). Sweden has adapted RUDAS to people with different linguistic and cultural backgrounds and developed a training program for health professionals regarding the application of this tool. Denmark has validated RUDAS for PwM. Sweden, Denmark, England, Wales, and Belgium (Flanders) follow an integrative care model. They adapt the mainstream services of the healthcare system to people with different linguistic or cultural backgrounds. Northern Ireland recommends that healthcare providers develop specialized services for ethnic minorities. The Norwegian Directive pursues a segregative care strategy with specialized services for cognitive assessment, dementia diagnosis, and follow-up, while subsequent treatment and care are provided as part of general medical care. This study has shown that some models of good practice exist in individual countries, but in Europe, as a whole, there is a significant gap in care for PwM with dementia.