Dementia in People with a Turkish Migration Background: Experiences and Utilization of Healthcare Services

INTRODUCTION

Germany, like many other European and western societies, faces increasing numbers of people with migration background (PwM) and health problems. The Federal Statistical Office of Germany defines migration background as not having German citizenship from birth or having at least one parent who does not have German citizenship from birth. This includes immigrant and nonimmigrant foreigners, immigrant and nonimmigrant naturalized citizens, German resettlers, and descendants born with German citizenship from the former groups [1]. According to census data, the number of PwM amounts to 18.6 million people, accounting for 23% of the population in Germany. In Germany, PwM often experience adverse health-related outcomes [2, 3]. However, they often do not utilize healthcare services to the same extent as those without a migration background, potentially exacerbating health related disparities in this population [2, 4, 5].

Older adults represent a subgroup of special interest in this population. According to census data, 1.99 million PwM are older than 64 years, representing 2.44% of the entire population of Germany and 11.52% of the population 65 years and older [1]. With increasing age, there is a growing probability of chronic and age-associated diseases including dementia [6, 7]. Dementia among people with migration background leads to different challenges for those affected as well as for professionals. For example, if the people affected have limited German language skills, it is problematic for them to communicate their symptoms to professionals; in turn, it is difficult for professionals to administer cognitive tests and interpret the results due to the lack of culturally sensitive cognitive tests and screening instruments, which may contribute to over- and underdiagnosis of dementia [8–11]. Provided both increasing numbers of persons with a migration background and growth in the older adult population and dementia cases, there is a need to better understand the specific problems facing this subpopulation and the healthcare system.

A major barrier to progress in this area is the lack of general research knowledge regarding people with migration background and dementia. For example, if more knowledge was available regarding their unique experiences with treatment and care directly from this population this would aid healthcare and service providers in tailoring their services to this population through more culturally responsive care. This is also critical to helping people with dementia and their family caregivers to engage support and resources to manage their situation. This is even more important when considering that PwM do not comprise one large homogeneous group where everyone with dementia can be treated the same. Similar to people without migration background, some characteristics are shared by some people but not others; thus, subgroups exist in this population and need to be identified. Recent analyses, for example, have highlighted the country of origin as a subgrouping factor. According to this estimation, approximately 96,500 PwM older than 64 years live with dementia in Germany. The most frequent migration backgrounds are as follows: Asian, Turkish, Polish, Russian, and Italian [12]. While there is little research focusing on Asian, Russian, or Italian countries of origin, there has been some research focusing on people from Turkey [13–16].

The number of people with Turkey as the country of origin in people 65 years and older is approximately 208,000, and the number of people with dementia in this group adds up to approximately 8,900 [12]. Thus, people from Turkey are not only one of the largest groups in the population of PwM in Germany but also in the group of PwM with dementia. Additionally, more research is needed on how to properly include PwM of Turkish background into the healthcare landscape. One previous study has identified challenges in treating and caring for this group. Based on personal interviews (n = 7) with people of Turkish background, the authors described that participants experienced a lack of knowledge about healthcare services and the fear of violating cultural norms when using professional help and formal services among others. Providing informal support is not guided by the diagnosis but rather that he or she needs help. These results are in line with other research in this field [13, 17, 18].

For the reasons cited above, we assume that dementia is even more underdiagnosed in PwM than in the population in Germany as a whole [19, 20]. This also results in a high unidentified proportion of family caregivers meaning a larger proportion of people in the group of PwM with dementia and their family caregivers are not being optimally supported by the healthcare system. In investigating how to optimally support this population, a practice-oriented approach is needed and it is important to analyze what is required in collaboration with the people affected. Generating such knowledge and using that approach could also help to ensure that cultural sensitivity will not be understood as a stereotyped concept but as a concept with different nuances that considers special characteristics without painting everyone with the same brush [18]. Considering the existing evidence, a need exists for action to determine the reasons for lower utilization of healthcare services and needed culturally responsive supports specific to dementia and caregiving. Due to a lack of culturally responsive healthcare services, it is important to determine what can be done to design healthcare services that are suitable for people with migration background, thereby increasing the utilization of healthcare services.

The present study focuses on PwM with dementia from Turkey and aims to: 1) examine the caregiving experience of family caregivers; 2) identify barriers to using information and healthcare services for people with dementia (PwD) by people with Turkish migration background; and 3) assess recommendations from the caregivers of PwM with dementia to increase healthcare utilization. The results are important to provide assistance to the healthcare system for a culturally sensitive approach in providing their healthcare services.

METHODS

The study was approved by the University Medicine Greifswald’s ethics committee. A qualitative design was chosen to obtain individual views on the topic of interest and in-depth responses on how participants experience caregiving, why they chose (or not) to utilize healthcare services, and what can be done to increase utilization [21]. The interviews were conducted in German, and quotes for this article were translated.

RESULTS

The main findings of the interviews can be classified into five main categories: care situation, prior knowledge, challenges, utilization of healthcare services, and recommendations.

DISCUSSION

The primary goals of this study were to depict the experiences of caregivers of people with dementia and a Turkish migration background, determine the reasons for the lower utilization of healthcare services by people with a Turkish migration background diagnosed with dementia and their family, and assess what can be done to reverse this circumstance from their point of view.

Our analyses revealed that PwM face similar challenges in taking care of PwD as people without migration background, e.g., difficulties with increased night activity, aggressiveness, the need to be alert at all times, and being stressed or facing job constraints [25–27]. To deal with these challenges, different coping mechanisms and measures are undertaken, e.g., reminding oneself that dementia is a disease and the PwD is not at fault, explaining everything to the PwD, and being patient with him/her.

Importantly, when the present participants were asked what they would like to have regarding services and if they wanted culture-specific services, most did not wish for services that are solely for people with a Turkish migration background. Instead, participants requested that existing services are more open to Turkish culture. Most Turkish participants experienced pronounced difficulties in obtaining information and/or a lack of information. One participant complained about not getting help and having to inform herself about everything related to dementia. Therefore, it seems to be a challenge to disseminate existing information to people with a Turkish migration background. These findings are in line with the “Allianz für Menschen mit Demenz” that illustrated the need for an approach that is specifically tailored to the needs of PwM concerning support services for PwM in their report. It is important to consider the differences in traditions, language, religion, and customs when taking care of this population [28, 29]. An example of this approach is “Diversity Management.” In the German healthcare system, a culturally sensitive and appropriate needs-based care is scarce; therefore, specific information about PwM cannot be fully considered. However, demographic and socioeconomic factors also play roles in the healthcare of PwM and should not be neglected. In optimizing care for PwM, diversity management suggests frameworks that should be implemented in the facilities of healthcare that not only allows for culturally sensitive responses to the needs of PwM but also promotes an open approach toward PwM [30].

As recommended by participants, to gain knowledge not only about available services but also other helpful measures, it would be useful to employ a consultant with a Turkish migration background to visit PwD and families at home. The consultant could take a close look at the situation and provide recommendations, serving as a navigator for healthcare utilization and other services. In connecting people of Turkish background to pertinent information, personal contact is important and desired. Additionally, the contact person must be someone who has good knowledge of Turkish culture because this helps people open up and feel understood; preferably, the contact perhaps also speaks Turkish as it is sometimes easier to share emotions in one’s native language. One illustration of the importance of being familiar with culture in the present study is the observation that nursing homes were not considered an option. The participants talked about how that is something that is just not done in Turkish culture because it means parents have not raised their children well, further supporting results by Mogar and von Kutzleben [13] suggesting that taking care of a family member is a matter of course and the deciding factor is that a family member needs help. This type of culture-specific information is important in forming trustworthy connections between consultants and the people of Turkish background looking for services.

It was evident that information on healthcare services is difficult to obtain and should be made easier for the people affected; another option would be to spread information about services where people with migration background are spending time, e.g., culture-specific community centers or mosques. To accomplish this, it is important to cooperate with people working there to spread the information. If the providers of healthcare systems could work more with these places, it may better inform them about people with migration background. From our experience in conducting the interviews and in trying to find interview partners, we found it was important to work with professionals of the same culture to contact the desired population. Another way to reach PwM may be to use media (e.g., radio, TV, and newspaper) relevant to that culture to disseminate information about dementia and available services. Because there are differences between and within cultures, it is important to engage the people affected themselves in the design of services and obtain their opinion directly [31].

Based on this research, we propose an approach to navigate the healthcare system that supports systematic implementation of current concepts (Fig. 1).

Fig. 1

Proposed approach for navigation in the healthcare system.

On the community level, navigators should be available to people with Turkish migration background and dementia as well as their family members. These navigators would specifically provide them with information on dementia and help them access the healthcare system and formal healthcare services, e.g., which doctors to consult and where they can obtain caregiving help. In a best-case scenario, these navigators should be of the same culture, or at least have knowledge of and familiarity with Turkish culture, so they know what is valued when providing information to affected people [32, 33].

In Germany, certain cities and communities (e.g., Herne) offer “intercultural dementia guides” to help people in dealing with dementia. These types of useful services should be implemented nationwide. On the healthcare system level, people and institutions should be culturally sensitive in their approaches and services. From the perspectives of current participants, no unique and targeted services were needed for people with Turkish background. Rather, they wanted an awareness, knowledge, and a few alterations to the current system to embrace the Turkish culture. This is aligned with the basic principle of person-centered care. An optional step in this model are the gatekeepers. These are specialized options such as support groups for family members in the native language if needed. Gatekeepers can also serve as a way to help the people affected find their way into the healthcare system.

Of course, this proposal leaves room for discussion. For example, the intercultural dementia guides could also be a form of dementia care manager (DCM), a successful concept that was implemented by the German Center for Neurodegenerative Diseases Rostock/Greifswald in Mecklenburg-Western Pomerania. In this model, specially-trained DCMs visit PwD and their family caregivers at home and offer help and advice regarding their situation [34]. In terms of gatekeeper services, a suggestion would be to build intercultural dementia networks where people affected can be educated, obtain support from people in the same situation and be easily integrated into the healthcare system.

One might expect different outcomes from this study because PwM with dementia not only face challenges associated with dementia but also may face cultural barriers reported in previous research such as language barriers, different conceptualizations of health and disease, fear of stigmatization or a different organization of healthcare systems in the countries of origin [35, 36]. That situation is not the case in this study. The participants faced similar challenges as the population without migration background. However, the small and selective sample of eight participants needs to be considered when interpreting the results. If more people were interviewed, the analyses might have shown more and/or different experiences from those reported in this study. Furthermore, this population might be considered integrated in the healthcare landscape with better knowledge about the healthcare system and its available services. Hence, they could only report about the non-utilization of healthcare services retrospectively. Furthermore, most participants were proactive regarding help-seeking, e.g., visiting and telephoning offices. Therefore, they may not be representative of populations that are less or not integrated with healthcare systems and less likely to actively seek and accept help. Additionally, most participants wished for a translator to be present during the interviews. The translators were of the same culture and were working in the field of migration and health or, in one case, was a friend of the participant. This could have influenced the response behavior of the interviewed persons.

Although a translator was present during most of the interviews, the participants had good German language skills. This is another factor to consider when interpreting these results. Possessing good German language skills can make it easier to reach out to professionals and communicate with them, as well as obtain help and support. These are factors that distinguish them from people who lack knowledge of the healthcare system and language skills and, therefore, do not appear in the healthcare landscape. Including those people in research might lead to different results.

However, accessing this population is complicated. Recruiting proved to be difficult and tedious despite having approximately 40 stakeholder contacts either of the same culture working in the field of dementia and migration or at least working with our target group, who were more than willing to help find suitable interview partners. One reason for the lack of willingness to participate is that potential participants are very hesitant to participate in research. Of note, the mandatory signatures for informed consent forms and the length of study information sheets were cited as deterring factors.

Future research should explore how information could best be provided to communities of PwM. However, even more important is identifying measures to reach a population that is excluded from the healthcare landscape and, therefore, cannot be reached by stakeholders in the field of dementia and migration. In this regard, the future aim will be to present that PwM with dementia are not only underserved but also under-researched.

The challenge of a growing population of older Turkish migrants is shared between many countries. There are 6–9 million Turks living outside Turkey, who settled in countries such as Azerbaijan, Kazakhstan, Russia, and Ukraine [37]. Turkish “guest workers” also went to countries such as Germany, the Netherlands, Belgium, France, Austria, and Sweden in the 1960s [38]. An estimated 500,000 Turkish people live in the United States. Even though differences in healthcare systems exist, migration-specific challenges might be of interest to others as well. We hope that our analysis encourages international research on people with Turkish migration background.