Structures for the care of people with dementia: a European comparison

Abstract

Background

Dementia is a disease that impacts people with dementia, their families, and the healthcare system. In 2018, the number of people with dementia in the EU, the European Free Trade Association (EFTA), and the UK was estimated to be 9.1 million. National dementia strategies and publications by organisations such as Alzheimer Europe outline how dementia-specific care should be designed. This study aims to provide insights into existing formal care structures, models of good practise, and gaps in dementia-specific care for people with dementia in 17 European countries.

Methods

The research is based on guided interviews with country-specific care experts. A mixed-methods approach with a combination of open and closed questions was used. All interviews were recorded and transcribed verbatim based on the transcription rules of Kuckarts (2010). For data evaluation, the qualitative content analysis model of Mayring (2014) was used.

Results

In all 17 countries, efforts for dementia-friendly care and models of good care practise exist. However, there are large differences between European countries regarding the spread of dementia-specific services. In nine countries (Bulgaria, Finland, Italy, Liechtenstein, Luxembourg, the Netherlands, Norway, Sweden, the UK), there are already nationwide structures, while in five countries (Belgium, Greece, Ireland, Portugal, Romania), services are only available in certain regions. In three countries (Austria, Denmark, Germany) dementia-specific outpatient services are widespread nationwide, whereas inpatient services are not. Simultaneously, in all countries, areas with major care gaps exist. Several European states have an urgent need for action concerning the expansion of the provision of dementia-specific services, the reduction of regional differences regarding the provision of care, the elimination of barriers to access to care, the dementia-friendliness of services, and the participation of people with dementia and their relatives in care and research.

Conclusions

To reduce the existing structural inequalities in care between and within European countries, and to establish quality-related minimum standards in the care of people with dementia, transnational concepts are needed. The EU, in cooperation with care planners, research institutions, care providers, and patient organisations, should develop European care guidelines or dementia plans that contain concrete measures, schedules, and budgets.

Background

Dementia is a disease with a comprehensive impact on people with dementia, (caring) relatives, and the healthcare system. People with dementia may experience limitations not only in cognitive abilities and behaviour [1] but also, for example, depression and anxiety [2]. Dementia is often accompanied by high rates of unmet needs. One study shows that people with dementia can have eight or even more unmet needs on average. The needs areas are pharmacological treatment and care, safety at home, social counselling and legal support as well as dehydration and poor nutrition. The needs are mostly associated with indicators of need for care but also socioeconomic and demographic factors. Furthermore, they are influenced by caregiver’s demographic and socioeconomic status and their need for care [3, 4]. The severity of dementia, behavioural problems, or psychological symptoms of people with dementia can be a cause of depression and a great burden on caregivers [5]. The literature suggests that there are unmet needs among those caring for people with dementia. A study conducted in Germany determined a number of up to six or in some cases even more unmet care needs for family caregivers. These unmet needs arise in areas such as physical and mental health or quality of life [6, 7].

Alzheimer Europe estimates in its ‘Dementia in Europe Yearbook 2019’ the number of people with dementia at approximately 9.1 million in 2018 for the EU¹, the EFTA², and the UK³. By 2050, this number is estimated to rise to approximately 16.8 million [8]. In 2015, this high number of people affected outcomes in annual costs for the treatment and care of Alzheimer’s disease in the EU-28 of €119.6 billion (for mild stages of the disease), €66.8 billion (moderate), and €45.6 billion (severe). These costs are estimated to increase to €330.4 billion (mild), €180.8 billion (moderate), and €121.3 billion (severe) by 2050 [9].

On a policy level, European countries are increasingly publishing national dementia plans (NDPs) in which they outline various areas that are relevant for the dementia-specific care of people with dementia and their caregivers [10]. There are also reports from organisations such as Alzheimer Europe, Alzheimer’s Disease International, and Alzheimer societies on how best to provide dementia-specific care. However, in practise, the care situation of people with dementia and their caregivers may be different from what is required and desired in NDPs and reports from these organisations. Furthermore, not all European countries have a NDP and there is a wide variation in the actuality of such documents. Some countries (for example Norway) regularly update their dementia action plans, while there are other countries whose NDPs are more than 5 years old.

Although the organisation of healthcare in the EU is the responsibility of individual countries, the European Commission’s objectives include protecting and improving the health of Europe’s inhabitants, making health systems more resilient, and supporting healthcare systems to modernise and digitalise. To implement these goals and make countries’ healthcare systems accessible, resilient, and effective, the European Commission’s Directorate-General for Health and Food Safety provides aid in the form of funding, coordinating exchanges between EU countries and health experts, or through health promotion activities. On this basis, it makes sense to develop an EU strategy to support people with dementia and their families, which individual states can use as a guideline [11].

The aim of this study is therefore to provide national and international care planners with insights in available formal dementia-specific support and care structures in different European countries, existing models of good care practise in Europe, and areas of dementia-specific care with gaps that create a particular need for action. By systematically presenting these insights in existing structures, models of good practise, and gaps in dementia care at the national and European levels, care planners will be shown fields of action as well as potential solutions and networking opportunities.

This study explicitly asks for the existence of dementia-specific care structures because the authors argue that, due to the major impact of a dementia condition on the living situation of people with dementia and their family members and the resulting specific needs of these people, there is a necessity for specific services tailored to these needs. Simultaneously, it is important to make the general services of health and care systems dementia-sensitive, as people with dementia still have many needs in common with people without dementia and it is important and desirable for their social and societal inclusion as well as for the quality and diversity of societies that they participate in general services. This, in turn, can lead to increased sensitivity to dementia and the needs of people with similar conditions on the side of care systems and societies.

Methods

The study presented in this paper is a mixed-methods approach with qualitative and quantitative elements. To collect the data, guided interviews with experts from different European countries were conducted. This study aimed to interview at least one national expert on dementia care and at least one expert on dementia and migration for as many EU, EFTA, and UK countries as possible about existing dementia-specific care structures. The guide included both open questions and closed questions with standardised answer categories. The interviews, which were conducted mainly via the Zoom video conferencing platform, were recorded, transcribed, and finally evaluated. In evaluating the data, content analyses were conducted. The model of qualitative content analysis by Mayring (2014) was used for orientation.

This study was conducted within the framework of the project ‘EU Atlas: Dementia & Migration’ funded by the Robert Bosch Foundation. Experts in the fields of health and dementia care, as well as migration, were interviewed in n = 17 European countries. The participants were researchers, care planners, care providers, or representatives of dementia associations or Alzheimer societies and thus general experts in the field. They were asked questions about formal care of people with dementia and the support of their family members, some specific to the care of people with a migratory background, and some aiming at the general population. While largely comprehensive responses to migration-specific items have been published, general population data are systematically published for the first time in this article.

Recruitment of study participants

Experts were recruited through professional events such as the Alzheimer Europe Conference 2019 or the Public Health Conference 2019. The eligible participants of these conferences were personally contacted on site. In addition, authors of dementia-specific articles identified via databases such as PubMed, editors, and authors of NDPs and care guidelines, as well as representatives of national ministries of health, professional societies, and Alzheimer societies, were contacted and invited to participate in the interviews by e-mail. Study participants were purposively selected based on professional expertise evidenced by publications. Overall, recruitment was a challenge exacerbated by the COVID-19 pandemic. Correspondence with some experts broke off temporarily or permanently during the pandemic. Furthermore, no experts could be recruited from several countries. A major reason for this is the fact that ‘Dementia & Migration’ is either not a topic of interest or it is such a new topic in these countries that there might not be people considering themselves to be experts in this area [12].

Interview setting and study participants

The first interview took place in a face-to-face setting at the institution of the expert, while the remaining interviews were conducted via Zoom video conferences due to increased health risks and travel restrictions in the wake of the COVID-19 pandemic. The period over which the interviews were conducted was twelve months (early 2020 to early 2021). A total of 26 experts from 17 countries were interviewed: Austria, Belgium, Bulgaria, Denmark, Finland, Germany, Greece, Ireland, Italy, Liechtenstein, Luxembourg, the Netherlands, Norway, Portugal, Romania, Sweden, and the UK. Except for Sweden, whose expert provided written answers, all interviews were conducted orally. Almost all interviews were held in English. Exceptions are interviews with experts from Germany, Liechtenstein, and Luxembourg, which were carried out in German [12]. During the interviews, exclusively two researchers and the participants were present. The interviewers were two PhD students from the research institution ‘Deutsches Zentrum für Neurodegenerative Erkrankungen’ (DZNE), in most cases these were the two first authors of this article and in some cases, one of the two first authors was supported by another PhD student of the DZNE. Before conducting the study, the interviewers and authors of this article established professional contact with the interview participants, which included providing participants with background information about the researchers and the aims of the study.

Interview guide

The questions for the interviews were derived from scientific articles, national and international reports, and an analysis of NDPs. For this purpose, a literature search was conducted. The results of this literature search were systematically screened for aspects relevant to migration. To avoid limiting the pool of possible topics and questions too much from the outset, not that many exclusion criteria were defined. A primary source for the questions was the Alzheimer Europe report ‘The development of intercultural care and support for people with dementia from minority ethnic groups’ from 2018 [13]. The questions covered the following areas: general information on dementia and migration (such as the importance and needs of this group), care (e.g. nationwide availability of dementia-specific health care services, suitability of these services for the care of people with dementia), inclusion and information of people with a migration background (like level of inclusion of people with dementia (with and without a migration background) into the healthcare system), professional care (such as culturally sensitive care as part of the professional qualification of healthcare professionals) and support of family caregivers (e.g. differences in information and healthcare services for family caregivers of people with dementia with and without a migration background). The interview guide developed was presented at an expert workshop, which was attended by some interview participants, and revised following expert feedback. The questions that are relevant to this study can be found in the chapter ‘Supplementary information’ at the end of this article.

Before the interviews took place, the experts were sent the interview guide with these and other questions on care, inclusion, and information of people with dementia with and without a migratory background, professional care, and support for family caregivers, together with a document containing definitions of key terms such as inpatient and outpatient care or inclusion of people with dementia and the research proposal of this project. This enabled the experts to prepare specifically for the interview and the individual questions and to obtain knowledge from other experts that they did not have themselves. As a token of appreciation for taking the time and making the effort to participate in the interviews as well as for their extensive preparatory work, the experts were offered an honorarium of €400 [12].

Transcription and analysis of the data

The interviews, which had an average duration of 90 min, were recorded and then transcribed. Therefore, the transcription rules of qualitative content analysis by Kuckartz (2010) were applied, and verbatim transcription was carried out [14]. The evaluation of the interviews was based on the method of qualitative content analysis by Mayring (2014). A combination of deductive and inductive categorisation was used to structure the content [15]. First, two categories were deductively derived from the categories of the interview guide: (1) care services for people with dementia; and (2) inclusion and information of people with dementia and their family members. The text passages that directly referred to one of these two topics were assigned to the categories and extracted. Then, subcategories were inductively derived from the data. The next steps included the formation of a category system, sorting and summarising the material, and tabulating the data. Finally, the results were presented in the form of country profiles. For a comparative analysis of the European countries involved, the country-specific results were first summarised in a table. The data were coded again (inductively), organised within the framework of a category system, and quantitatively processed and sorted. Subsequently, the similarities and differences regarding the country-specific results were described.

Definition of inpatient and outpatient care

In this study, inpatient care was defined as permanent care, treatment, and accommodation of a person needing care in a hospital or a nursing facility, such as nursing homes, hospices, and rehabilitation facilities. Outpatient care is to be understood as support for people in need of care and their family by providing medical or non-medical care in their residence.

Results

An overview of the participants, their background. and which country they are from can be found in Table 1.

Table 1 Participants and background

The results are first presented separately in tabular form (see Tables 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 15, 16, 17 and 18) based on profiles for each of the 17 European countries considered before a comparison was made, and the situation at the European level is described. The following country profiles are in alphabetical order.

Country profiles: the EU, the EFTA, and the UK

Table 2 Austria

Table 3 Belgium

Table 4 Bulgaria

Table 5 Denmark

Table 6 Finland

Table 7 Germany

Table 8 Greece

Table 9 Ireland

Table 10 Italy

Table 11 Liechtenstein

Table 12 Luxembourg

Table 13 Netherlands

Table 14 Norway

Table 15 Portugal

Table 16 Romania

Table 17 Sweden

Table 18 The UK

A comparative analysis of european countries

In this section, the results of the country-specific interviews with experts from 17 European countries are brought together, and an attempt is made to draw a picture regarding the existing care structures and gaps at the European level.

Existing structures in dementia care

Fig. 1

Availability of outpatient healthcare services for people with dementia

As shown in Fig. 1, the expert interviews indicated that in 13 of the 17 European countries considered, outpatient healthcare services for people with dementia are available nationwide or almost nationwide. However, regional care inequalities are also evident in a number of these countries. In Austria and Germany, the provision in some areas of outpatient care in rural areas is significantly lower and more inadequate than in urban areas, and in Italy, there is a north-south difference. In contrast, the experts from Belgium, Denmark, Finland, Liechtenstein, Luxembourg, the Netherlands, Norway, Sweden, and the UK reported that there are no significant regional inequalities in outpatient care. Whereas the countries mentioned above provide dementia-specific services nationwide, Bulgaria (almost nationwide) seems to provide care for people with dementia as a part of general health services. While specific outpatient healthcare services for people with dementia are available in several regions in Ireland and Romania, this form of care is limited to individual regions in Greece and Portugal. Inpatient healthcare services for people with dementia are only available nationwide or almost nationwide in just over half of the countries (see Fig. 2). Moreover, differences and inequalities in care are also shown in some of these countries. In Bulgaria, similar to outpatient care, no dementia-specific services are provided, in Italy, there are north-south differences, and in Finland and the Netherlands, the distance to hospitals or inpatient care facilities may be greater in some (rural) regions than in others. The experts from Liechtenstein, Luxembourg, Norway, Sweden, and the UK, on the other hand, did not report such problems. In Belgium, Germany, and Austria, inpatient healthcare services exist in several regions and in Portugal and Romania in individual regions. In Greece, there are some inpatient services in the private sector but hardly any in the public sector. No specialised inpatient services for people with dementia are available in Denmark, where a different approach is taken, as well as in Ireland.

Fig. 2

Availability of inpatient healthcare services for people with dementia

According to country-specific experts, in 11 of the 17 countries, existing care services are suitable for adequate care of people with dementia (Fig. 3), although in four countries, this is not the case (Finland, Norway, Sweden) or not to the same extent (the Netherlands) for all population groups. Furthermore, the experts from Bulgaria, point out that the existing services are quantitatively insufficient. While the expert from England could not give a clear answer for the UK due to the constantly changing situation, the experts from Belgium and Portugal indicated that this is partly the case in their countries. In Belgium, it depends on the individual organisations whether a person with dementia is offered dementia-sensitive care. In Romania, dementia-friendly services are only available in a few regions, and in Germany and Ireland, existing care services overall are not suitable for adequate care of people with dementia. The expert from Germany cited the lack of sensitivity of care providers to the specific needs of people with dementia as the main cause. In Ireland, besides the fact that existing care services are often not dementia-friendly, the problem already lies in a lack of specific services.

Fig. 3

Suitability of existing services for adequate care of people with dementia

Informational services for people with dementia and their family members are available nationwide or almost nationwide in 15 countries, as shown in Fig. 4. However, in some of these countries, there are considerable disparities between different population groups and regions. In Germany, for example, there is a lack of specific information for people with other diverse characteristics, and in Italy, there are significantly fewer dementia-specific information services in the south of the country than in the north. The experts from the Netherlands and Romania pointed out that information is available online and that access to this information is unevenly distributed among the population (very poor access is particularly prevalent among the older rural population in Romania, who often do not have an Internet connection and/or the necessary digital skills). In Greece, on the other hand, dementia-specific information is provided nationwide through different communication channels and within different campaigns. While the experts from Luxembourg and Norway explicitly referred to the efforts of the respective national governments in terms of dementia-specific awareness and information, the Romanian expert criticized the lack of political will in Romania to do more in this area. In Belgium and Portugal, informational services for people with dementia and their family members are only provided in some regions.

Fig. 4

Availability of informational services for people with dementia

Figures 5 and 6 illustrate that the situation is different for the topics of participation and inclusion. According to the experts, people with dementia are fully (Bulgaria) or almost fully (Denmark, Finland, Italy, Liechtenstein, Luxembourg) included in healthcare in six countries. While this is still partially the case in eight countries, inclusion hardly happens in Belgium, Germany, and Norway. The only country where people with dementia or their family members are often involved in the development of care services is Finland. Such a participatory approach is sometimes adopted in Austria, Bulgaria, Ireland, Luxembourg, and the Netherlands and increasingly in Denmark and Norway. Based on expert interviews, this is rarely the case in Germany, Greece, Italy, Liechtenstein, Sweden, and the UK, and not at all in Portugal. The experts from Greece and Sweden indicate that there are some efforts in the area of involvement of people with dementia and their family members (Greece: the NDP calls for participation of people with dementia in everything related to dementia, Sweden: some associations of relatives try to influence dementia care), but this has not resulted in more participation in the development of dementia-specific care services.

Fig. 5

Inclusion of people with dementia into healthcare

Fig. 6

Participation of people with dementia in the development of care services

Models of good practise and existing care gaps

Although there are considerable country-specific differences with regard to the availability and spread of dementia-specific care and informational services, as well as the inclusion and participation of people with dementia and their family members, all experts cited models of good practise in one or more of these areas (see Fig. 7). Such models were most frequently identified in the field of care services for people with dementia (eight times). For example, experts from Italy and the Netherlands referred to a high number of memory clinics, while other interviewees highlighted outreach services such as home care nurses (Austria), care, and support services (Liechtenstein), as well as dementia nurses and family support (Sweden). In Bulgaria, the concept of Alzheimer cafés is partly implemented. Another focus is on raising awareness in society and the care system (seven models of good practise). In Norway and Romania, for example, there are broad public campaigns on the topic of dementia. The Netherlands is focusing on the concept of a dementia-friendly community, and in Belgium, Denmark, and Germany, there are projects on dementia-friendly hospitals/nursing homes. Five models of good practise were cited by experts related to support services for family members. The focus here is on education, counselling, and training for family members of people with dementia (Bulgaria, Ireland, Liechtenstein, Norway). Experts from each of the three countries underscored models of good practise in the areas of dementia-specific information (Austria, Luxembourg, Sweden) and care structures (Denmark, Norway, Sweden). Especially in Denmark and Norway, there seem to be great efforts at the government level to establish nationwide standards in dementia care. Experts from Germany (where there is high activity among Alzheimer societies) and the UK (where there is an initiative to bring together GPs and specialists for dementia care) also cited models of good practise that can be assigned to the area of networking among stakeholders regarding dementia.

Fig. 7

Models of good practise

Simultaneously, all experts pointed to structural problems and gaps regarding the healthcare of people with dementia and their relatives (the main areas are shown in Fig. 8). However, these problems and gaps seem significantly larger in some countries (Belgium, Greece, Ireland, Portugal, Romania) than in others (Finland, Liechtenstein, Luxembourg, the Netherlands, Norway, Sweden, the UK), indicating the existence of major care inequalities within Europe and the EU.

Fig. 8

Gaps in the healthcare of people with dementia

Most frequently, the interviewed experts referred to gaps in service provision for people with dementia (n = 24, see Table 19). The interviewees from Austria, Bulgaria, Germany, Portugal, and Romania emphasised that not enough dementia-specific services are available for people with dementia in both the outpatient and inpatient sectors. In Austria, Belgium, Bulgaria, Norway, and Portugal, there are significant regional differences (including a strong urban-rural contrast) in the provision of inpatient care, and in Bulgaria, Norway, Portugal, and Romania, there are large disparities in the outpatient context. Further, the experts from Germany and Romania stated that care for people with dementia in hospitals is often insufficient. In Belgium and Bulgaria, a key problem seems to be the low availability of daycare facilities. Seven of the problems described can be assigned to the area of care access. Experts from Bulgaria, Finland, and the Netherlands reported that in some parts of their country (especially in rural areas), access to care is limited. For Finland, Greece, Norway, and Portugal, the experts identified fundamental barriers to accessing healthcare for people with dementia and their families, such as bureaucratic obstacles (Norway), the high cost of services (Greece), and a lack of support (Finland). Seven of the structural gaps cited by the experts were related to the adequacy and dementia-friendliness of care services. In Belgium, Germany, and Ireland, there seems to be a lack of sensitivity of services tailored to the specific needs of people with dementia. Another area where a great need for action exists is the participation of people with dementia and their relatives in care. According to the experts, such patient and family involvement either does not happen at all or hardly takes place in Germany, Greece, Italy, Liechtenstein, Portugal, Sweden, and the UK. Six points of criticism relate to the organisation and structuring of the care system. The experts from Belgium and Portugal stated that there is a lack of financial and government support for the establishment of comprehensive care standards. The Dutch experts criticised the one-sided design of dementia care, which is determined by experts, and the Norwegian interviewee considered the implementation of existing dementia-specific knowledge in practise to require improvement. While the availability of dementia-specific information is nearly nationwide in almost all countries included, the lack of accessibility of these services is a problem in several states. For Belgium, Germany, Ireland, and Romania, the experts identified structural deficiencies in the organisation and accessibility of informational services. Two experts each pointed to difficulties in dementia diagnosis (Ireland, the Netherlands) and a major lack of dementia-specific trained staff in hospitals (Romania) or care (Belgium).

Table 19 Identified gaps in service provision for people with dementia

Summary

Overall, efforts for dementia-friendly care and models of good care practise exist in all 17 countries. However, there are great differences between individual European countries regarding the spread of dementia-specific services and the development of structures for the care of people with dementia and their relatives. In some countries, comprehensive care structures already exist, while in other ones, care services are only available sporadically, efforts are made exclusively at the level of individual service providers or professionals, and there is a lack of political will to establish care standards. Simultaneously, in all countries, there are areas where there are major gaps in care and an urgent need for action. While salient differences are evident in the extent of the gaps, there is also some overlap in the thematic priorities between different European nations. Several experts called for restructuring measures in their country, such as a consistent national strategy for dementia care (Romania), a different structuring of the care system (Germany), or an expansion of existing structures (Austria). This could be used as a starting point for transnational networking of dementia care and the development of European strategies to establish minimum standards in the care of people with dementia and their relatives.

Discussion

The aim of this analysis was to provide insights into existing care structures, gaps, and models of good practise in dementia-specific care based on interviews with dementia care experts from 17 European countries.

Despite some positive results in this analysis (such as the organisation of dementia care in Denmark), there are nevertheless deficits that can overlap across states. One area that was often criticised by the experts was the provision of healthcare services for people with dementia. This is reflected in the literature [28,29,30]. Therefore, dementia-specific care needs to be adapted accordingly. In its Alzheimer’s Innovation Readiness Index of 2021, ‘Alzheimer’s Disease International’ emphasised that care for people with dementia ‘will require a more comprehensive infrastructure for detection, monitoring, diagnosis, treatment, and care, along with more advanced legislation and policies for effectively protecting informal carers and the rights of persons living with dementia, and facilitating greater access to services and treatments’, and that both informal and professional caregivers need more dementia-specific training. However, the reality shows that corresponding initiatives can be underfunded and in part not optimally executed [28]. Broda et al. (2017) indicated that there are different components for optimised dementia care, e.g. multidisciplinary, person-centred care services, the need to ease the dementia care pathway, and the networking of formal and informal care [31]. Alzheimer Europe highlighted the importance of dementia friendliness and the need to build a model for dementia-friendly communities that could be implemented on a European basis. This model should integrate existing efforts at the national level but leave room for individual adaptation to local circumstances [32].

Another area where significant deficits are evident is the participation of people with dementia and family carers in the development of healthcare services and information. Although greater awareness and understanding of the importance of the participation of people with dementia in healthcare services, research, and support have emerged in recent decades [33], the present analysis revealed a need for improvement. It is of immense relevance to involve people with dementia in the creation of healthcare services (as well as research and policy) for the following reasons: (1) people with dementia are experts in dementia and involving them leads to better outcomes; (2) involving them has advantages for people with dementia themselves, but also for (healthcare) professionals; and (3) people with dementia have the right to be involved. Thus, the participation of people with dementia and their family carers in the design and evaluation of healthcare services leads to services that are better tailored to their needs [33]. There are different ways of involving people with dementia. A scoping review from 2019 on design research reports on methods, recruitment, and tools among others when trying to involve people with dementia. It is suggested that one could conduct workshops together with people with dementia in which the needs of people with dementia could be identified, services or interventions could be created, or feedback could be obtained [34]. Kort et al. (2019) report on methods of involving people with dementia from five different projects. These include: observation, consultation, storytelling, focus group sessions, thinking-aloud sessions, and photo production and interviews [35]. A good example of people with dementia participating in designing information material is the ‘Living Well Handbook’. In this handbook, people with dementia and their carers note important information, such as emergency details, relevant facts about the person with dementia, and care planning. It further contains lists organisations that hand out information on dementia, provide support, plan future steps, and provide the help a person with dementia might need. This handbook was developed together with people with dementia and their carers [36].

When doing research on dementia and including people with dementia in research and in the design of information and healthcare services it is important to not only focus on people with dementia in general. It is relevant to pay special attention to people with dementia that are younger or come from the LGBTQIA + community or have a migration background or belong to an ethnic minority group. These are populations that not only face the dementia-specific challenges but also encounter other differences, such as aggravated access to healthcare for people from ethnic minorities, heteronormative healthcare services that are not suitable for people from the LGBTQIA + community, lack of healthcare services for younger people with dementia, and therefore have additional needs [13, 37, 38].

A further important aspect is the role of governments in the care of people with dementia and family carers. First, it is vital that they recognise dementia as a public health priority, which is not yet the case in all European countries [39]. In addition, they have a special responsibility to improve access to and quality of care, to help (in)formal caregivers, and to ease care pathways for those affected [28].

These are only a few relevant aspects regarding the care of people with dementia. Coordinating, repositioning, and optimising care for People with dementia and family carers requires a combination of actions among key stakeholders such as care providers, care planners, patient organisations, research, and governments.

Limitations

A limitation regarding the generalisability of this study’s findings is that the group of interview participants must be described as selective and not representative of experts in dementia care in European countries. Despite an extensive search, it was not possible to include an expert for every EU, EFTA, and UK country. While several experts were identified and interviewed in a few states, only one expert could be recruited in most of the countries studied. Moreover, according to self-assessment, not all interview participants were primarily experts in the field of dementia. Some participants focused on general healthcare or the topic of migration (e.g. Greece), which is partly because experts in the area of dementia and migration were originally searched for. Furthermore, the experts have different professional backgrounds, which poses a limitation for the comparability of the results. Hence, the findings do not provide a complete picture of the care situation in individual European countries, although that was not the aim. Rather, this paper is intended to draw attention to specific country-specific and cross-country care areas where there is a particular need for action. This study can and should be used as a starting point for further, more in-depth analyses with experts from different areas of formal and informal care in as many European states as possible. For a valid description of the situation regarding the formal care of people with dementia and their relatives, as well as existing specific care services for this population in individual European countries, more research is necessary using different methods, such as country-specific literature analyses and large-scale surveys among care experts, planners, and providers in the respective countries.

The interview guide designed for the project ‘EU-Atlas - Prevalence of dementia in people with a migration background’ contains specific questions on the care of people with dementia with a migratory background [12]. According to the authors, the general questions on dementia-specific care structures are sufficient to give initial insights into basic inequalities and gaps in the care systems and to identify individual models of good care practise, but an objective and comprehensive representation of care services cannot be provided. The interview guide and the results were shaped by the experts’ points of view. To reduce the influence of the individual’s personal opinion and to improve the quality of the answers, the guide was sent to the experts some time before the interviews were held. Another limitation concerns the predefined answer categories, which improved the comparability of the data but distorted the experts’ documented views on the care situation in their respective countries, and led to an underestimation of complexities in individual nations. To counteract this, open questions were asked after almost every closed question. Despite these limitations, the study provides useful information for care planners at the national and European levels regarding current problems in formal dementia care, existing gaps in European health systems, important dementia-specific fields of action, and models already established in individual countries to address the problems described. This study is a valuable addition to the current literature on existing structures for the care of people with dementia in Europe, as its mixed-methods approach and the consultation of experts in care practise from individual countries provide more in-depth, country-specific information and first-hand conclusions, and can thus be used as a reference point for comparisons between care planning written down in documents and the actual circumstances in care practise.

Conclusion

The considerable inequalities in dementia care within and between many European countries, as well as the structural deficiencies in key areas of care that exist to varying degrees in all countries and partly show large overlaps (according to interviews with country-specific experts from 17 EU, EFTA, and UK countries), illustrate the need for major restructuring measures and paradigm shifts. Changes like these are, of course, dependent on the individual healthcare systems in each country. What can be done in one country might not be feasible and manageable in another. However, to initiate such extensive systemic transformations and to establish quality-related minimum standards in the care of people with dementia—which is often marginalised and has specific needs—supraregional and (ideally) transnational strategies are required. Since the EU was originally a community of values and its institutions are committed to the goal of achieving equal living conditions for all population groups living in its member states, it should be the EU’s task to develop such concepts at the European level together with cooperation partners, such as the parliaments and ministries of their member states, care planners and experts, research institutions, care providers, and organisations of people with dementia and their relatives. Within the framework of EU programmes such as European care guidelines or dementia plans, which must receive binding budgeting in addition to concrete time schedules, special attention should be given to the European networking of key stakeholders in dementia care; the sensitisation of European societies and care systems to the topic of dementia; the development of Europe-wide care structures for people with dementia and their relatives in both outpatient and inpatient contexts; the validation of the dementia-friendliness of these services with people with dementia and their relatives; the elimination of barriers for the access of people with dementia and their relatives to information, support, and care services; the dementia-specific education and training of health and care professionals; and the participation of people with dementia and their relatives in all areas of dementia-specific care and research. In particular, the inclusion of people with dementia and their relatives in European societies and care systems should be given greater priority in future dementia care strategies. In addition to a fundamentally open attitude toward the needs of other people, adopting a supraregional and transnational perspective can be helpful in this regard. Some existing models of good practise, such as the Norwegian dementia action plan or the concepts of dementia-friendly communities, hospitals, or nursing homes, which have been partially implemented in Belgium, Denmark, Germany, and the Netherlands, can be used as a starting point for broadening the perspective and for international cooperation.