Caring for Ethnic Older People Living with Dementia

Caring for Ethnic Older People Living with Dementia – Experiences of Nursing Staff

Mirkka Söderman & Sirpa Pietilä Rosendahl

Journal of Cross-Cultural Gerontology ISSN 0169-3816 J Cross Cult Gerontol DOI 10.1007/s10823-016-9293-1

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Author's personal copy J Cross Cult Gerontol DOI 10.1007/s10823-016-9293-1 O R I G I N A L A RT I C L E

Caring for Ethnic Older People Living with Dementia – Experiences of Nursing Staff Mirkka Söderman 1 & Sirpa Pietilä Rosendahl 1

# Springer Science+Business Media New York 2016

Abstract The total number of persons living with dementia is estimated to double every 20 years and ageing migrant populations are growing in several countries. There are gaps in the health and social care of people from other countries, regardless of the efforts made when someone has a dementia diagnosis; similarly, receiving care in sheltered accommodation is less common. The aim of this study was to explore and describe the nursing staff’s experiences of caring for non-Swedish speaking persons living with dementia in a Finnish speaking group home in relation to a Swedish speaking group home in Sweden. 27 qualitative semi-structured interviews were analysed using qualitative content analyses. The first main category, Bcommunication^, concentrated on language abilities and deficiencies, non-verbal language, highlighting the consequences of not understanding and the benefits of a common language. The second main category, Bculturally oriented activities^, focused on being served traditional food, celebrating holidays at the group home, the importance of traditions and the importance of familiar music as cultural elements. The Swedish speaking nursing staff could provide qualitative and equitable care, but the challenge was greater for them than for the bilingual nursing staff who spoke the same language as the residents. Keywords Bilingual nursing . Dementia . Immigrant . Qualitative

Introduction Among the increasing number of older people living with dementia, there are older immigrants (Williams and Warren 2009; Kong et al. 2010; Lawrence et al. 2010; Wu et al. 2010). In addition to the cognitive symptoms of dementia, a person with dementia loses their second language as the condition progresses into its advanced stage, and this can be a challenge in care

* Mirkka Söderman [email protected]

1

School of Health, Care and Social Welfare, Division of Caring Sciences and Health Care Education, Mälardalen University, Eskilstuna-Västerås, Sweden

Author's personal copy J Cross Cult Gerontol

situations. In some municipalities in Sweden, non-Swedish speaking older persons living with dementia receive care in a care setting where their native language is spoken. The two care settings are organised in similar ways according to Swedish care regulations. However, most non-Swedish speaking older people living with dementia receive care in Swedish speaking institutions. This study is about the experiences of the nursing staff and a comparison of the care in a Finnish speaking and a Swedish speaking care setting to explore what it is like to provide care in a context where the person’s native language is spoken compared to a linguistically alien environment.

Older Immigrants and Dementia The total number for persons living with dementia is estimated to be 35.6 million and it will double every 20 years (Alzheimer’s Disease International 2009; Princea et al. 2013). There are growing ageing migrant populations and groups of non-English speaking older persons with dementia in several English speaking countries, such as Australia (Williams and Warren 2009) and the United States (Kong et al. 2010), with Chinese Americans as the largest Asian immigrant group (Wu et al. 2010). Similarly, in the UK, the number of persons living with dementia is estimated to increase among older black Caribbean and south Asian immigrants (Lawrence et al. 2010). In Sweden, which has a population of 9.7 million people (Central Bureau of Statistics (SCB) 2014), there are approximately 160,000 people with dementia and that number will double by 2050. Of these 160,000, 20,000 were not born in Sweden, and the proportion of people born outside the Nordic countries is expected to increase significantly (the Swedish National Board of Health 2014). Because of cultural barriers to seeking help for dementia, the number of immigrants with dementia may be higher than estimated. According to a study by Haralambous et al. (2014), barriers to seeking help may be related to language difficulties and different cultural views of memory problems. For example, symptoms of dementia can be viewed as normal ageing, rather than as a disease, and views of old age care, where older persons with dementia are supposed to receive care from their family, rather than in a nursing home (Kong et al. 2010). Additionally, seeking help could be related to an individual’s life history, earlier health experiences and practices (Mazaheri 2013). However, as the disease progresses, the person with dementia will need care services. There is no uniform definition of immigrants, but the term may include individuals with residence permits, asylum seekers, refugees, rejected asylum seekers and undocumented individuals. In Sweden, the term immigrant should be applied to people who have moved to Sweden from another country and people posted here, that is; those born in Sweden with parents who are immigrants (Government Offices 2000). In this study, the term is used for both people born in a different country and of foreign origin.

Dementia According to the Diagnostic and statistical manual of mental disorders, DSM-5 (American Psychiatric Association 2013), a dementia diagnosis includes both impaired memory function and a reduction in one or more other cognitive abilities such as language, executive ability, and visuospatial ability. People with dementia may show a range of symptoms that impede their daily lives, these include difficulties interpreting visual stimuli, i.e. agnosia, and difficulty performing volitional


actions, i.e. apraxia. The difficulties vary with the type and degree of dementia. People with mild dementia only show problems in stressful situations, while people with severe dementia have serious problems in most situations (American Psychiatric Association 2013). People with moderate to severe dementia may show behaviours that are difficult to understand and burdensome for families and nursing staff, such as apathy, pacing back and forth, aggressiveness and plucking behaviour (American Psychiatric Association 2013). Alzheimer’s dementia and other dementia diseases are also related to the ability to communicate, which leads to specific problems related to the disease. People with dementia lose the ability to see the connection between actions, consequences and messages, and they gradually lose the ability to respond to directives (Williams and Warren 2009). Individuals with dementia have difficulty expressing themselves and interpreting the expressions of others as related to problems with verbal and non-verbal language (American Psychiatric Association 2013). These symptoms of impaired memory function and reduction in one or more cognitive abilities are global, but there are communicative differences in bilingual individuals. During the disease progression the bilingual person loses a language learned later in life and only uses his or her native tongue. This varies among different people depending on language ability before the disease and severity of the disease. This can cause major problems in health care situations for nursing staff who do not speak the patient’s native language (Ekman et al. 1994; Ekman 1996; SBU 2006). In addition, a linguistically alien environment, where the native language of older immigrants is not spoken, may cause significant deterioration even in their native language (Meguro et al. 2003). Moreover, not being able to communicate with other people in the environment can lead to isolation and a feeling of loneliness for the older immigrants (Runci et al. 2005). A study of a care encounter between an older multilingual Persian woman with dementia symptoms and nursing staff in an ordinary Swedish residential home without language matching showed that communication was limited to instrumental talk, minimal answers, non-verbal expressions of understanding, questions and assessments. Language asymmetry and limited language ability were experienced as an additional burden on the already heavily burdened nursing staff, and the multilingual resident’s symptoms risked being interpreted as an advance or a reversal in disease progression (Plejert et al. 2014). However, another study showed that when relatives were used as interpreters, the care provided could be individualised and made relevant to the older person’s needs and wishes (Runci et al. 2005).

Dementia Care for Older Immigrants The recommendation from Alzheimer’s Disease International’s (2009) is that services to people with dementia should be distributed following the main principle of maximising coverage and ensuring equal access so as to benefit people with dementia regardless of age, sex, wealth, disability or where they are located geographically. The person with dementia needs to be treated at all times with patience and respect for their dignity and personhood, and he or she should receive the support needed in order to enhance his or her wellbeing for as long as possible (American Psychiatric Association 2013). In Sweden, according to the national recommendations for nursing, health care and social services, people with dementia should be given person-centred care. It is about establishing a relationship with the person living with dementia and basing care on their perspective. It also means the care provided should take into particular account needs related to different cultural or linguistic backgrounds. Cultural considerations in this caring context involve, for example, the opportunity to practice one’s religion, have access to culturally appropriate food, opportunities to celebrate cultural


traditions and customs and have access to staff who speak the same language as the person with dementia. The recommendation relates to people with dementia in ordinary housing and institutional care (the National Board of Health 2010). Assessments in Sweden show that there are gaps in the health and social care of people from other countries, regardless of the efforts made when someone is diagnosed with dementia; socioeconomic factors play a role as does country of birth (the National Board of Health 2014). To date, the number of immigrants with dementia receiving care in institutions has been low in Sweden. This might be related to the number of people with a dementia diagnosis and cultural barriers to seeking help. However, with the growing number of older immigrants, institutional care will have to be considered. So far, most of the earlier studies of immigrants with dementia have been conducted in countries with a long history of immigration and with large groups of immigrants. In the United States, there is an increasing number of non-English speaking elderly people with dementia and their families who may be more vulnerable than other groups because of communication difficulties and cultural differences. This can reinforce challenges to health care and it is considered important that health professionals assess cultural factors, such as ethnicity, language and acculturation to the American culture, in health care. At present, there is a need to develop more interventions targeted particularly at communication and cultural issues for non-English speaking older people with dementia and their families in order to facilitate a better understanding of cultural differences among nursing staff (Kong et al. 2010). A British study which compared three ethnic groups, black Caribbean, south Asian and white British people, showed that groups receiving culture congruent care, including value elements of the process to understand the condition, attitudes surrounding support needs and valued elements of life, were culturally informed (Lawrence et al. 2010). In Norway, a study of Sami people showed that, while the way dementia influences mental functions and language is global, behaviours, reactions and responses may be coloured by the patient’s background culture and that knowledge of language, cultural codes and the individual life story are primary keys in understanding the person (Hanssen 2013). Earlier studies of Finnish immigrants with dementia in Sweden showed that they had difficulties communicating with their Swedish speaking caregivers, while their communication with a Finnish speaking caregiver was adequate. The Finnish immigrants living with dementia also functioned on a level of manifest competence that seemed far below their level of latent competence. It seemed that the presence of Finnish speaking nursing staff was an environmental change that markedly enhanced the Finnish persons’ performance and quality of life, as well as reducing care costs (Ekman et al. 1994). It was also found that bilingual nurses promoted the patients’ integrity in a more comprehensive way than Swedish speaking nursing staff did. Another study showed that language was a component that eased communication and care situations, as well as affecting the residents’ well-being positively (Heikkilä et al. 2007). Interaction with bilingual nursing staff proved to be more multi-dimensional, and the development of their interaction was more positive than with the Swedish speaking nursing staff (Ekman 1996). In order to identify cultural needs in these health contexts, culture needs to be defined.

Culture Care Theory In this study, the term culture includes components as described by Madeleine Leininger in the Theory of Culture Care and Diversity, which is a holistic, culturally-based care theory covering broad humanistic dimensions of people in their cultural context. The term cultural care focuses on identifying values, beliefs, ways of life and symbolic referents related to culturally-based


care factors (Leininger 2007). The goal of the theory is to discover culturally-based care that promotes and/or maintains the health and wellbeing of individuals, families or groups (Leininger 2007), and finding ways to care for immigrants and refugees with many different and neglected cultures (Leininger 2002). The purpose is to promote health, healing and wellness. Leininger (2007) means that culturally-based knowledge can meet the needs of a multicultural world population and provide care that is beneficial, safe and allows healing. The theory includes measures and manner of decision making for the preservation and maintenance of cultural care, housing with culturally congruent care and the restructuring of health care to be culturally congruent. This is supposed to guide health care professionals to include culturally-based values, beliefs and practices to ensure and maintain culturally congruent care. And, most importantly, it guides health care professionals away from using unsuitable, routine, uncertain, traditional or destructive actions which are not culturally congruent (Leininger 2007). Diversity, the differences in different cultures, but also that which is universal and common characteristics of different cultures, are needed for creating varied forms of culturally congruent care. The theory has a model which describes various dimensions, but the crucial aspect is that a nurse listens with a very open mind, learns from the resident and does not impose his or her own ideas (Leininger 2002). Knowledge about measures provided to non-Swedish speaking elderly people with dementia is still scarce. Therefore, it is important to increase the knowledge about the needs of people with different cultural and linguistic backgrounds (the National Board of Health 2014). Describing care in two different contexts, a Finnish speaking and a Swedish speaking care context, can contribute to a deeper understanding of the importance of culturally appropriate care and services, and is the starting point for this study.

Aim The aim of this study was to explore and describe nursing staffs´ experiences of caring for nonSwedish speaking persons with dementia in a Finnish speaking group home and a Swedish speaking group home in Sweden.

Material and Method In order to describe the personal experiences of the nursing staff and to cover a variation of experiences, a qualitative approach was used. The contexts were a Finnish speaking group home and a Swedish speaking group home in Sweden. For recruitment to the study, contact was made with the head nurse of each group home. All requested nursing staff agreed to participate in the study. The participants (Table 1) in the Finnish speaking group home for persons living with dementia in Sweden consisted of 12 Finnish speaking persons; (2 registered nurses and 10 enrolled nurses, 2 men and 10 women, aged 20 to 58). All were born in Finland and had emigrated to Sweden at a young age. The participants in the Finnish speaking group home were selected because of their knowledge of the Finnish language. In the Swedish speaking group home caring for non-Swedish older persons with dementia, the participants (Table 1) consisted of 15 nursing staff (all females, aged 23 to 60). Of the Swedish speaking nursing staff, five were bilingual and spoke both Swedish and the same language as the older persons


Table 1 Participants

Finnish speaking group home in Sweden

Swedish speaking group home in Sweden

Finnish

12

-

Swedish Bilingual

0 0

10 5

Context Characteristics Language

Age

Range

20–58

23–60

Gender

Male

2

0

Female Total number

10

15

12 nursing staff

15 nursing staff

27 participants

living with dementia, namely Finnish, Russian, Estonian or Hungarian and 10 who spoke only Swedish. The participants who spoke only Swedish were chosen because of their relationships as contact persons to persons with dementia, meaning they spent comparatively more time and had more responsibility for the persons with dementia. The two linguistically different care settings were chosen so as to be able to describe the care in those two settings in relation to each other. The older persons living with dementia were diagnosed with dementia before they were admitted to the group homes. In Sweden, persons living with dementia have to reach a moderate or advanced stage of the disease to be admitted to a group home. By the time of the data collection, the older persons were in different stages of disease progression and this affected their language abilities differently. Some of them had previously had good Swedish language skills, while others had never learnt Swedish. The data consist of 27 qualitative semi-structured interviews conducted by the second author with the nursing staff. Data consist of taped interviews (with a length of approximately one hour) based on a semi-structured interview guide which was constructed in relation to the purpose to this study. Examples of interview questions are: Could you tell me something about what an ordinary day is like for XX? Or, In what way do you communicate with each other? The interviews were transcribed verbatim by the second author and the material was analysed using qualitative latent content analysis inspired by Graneheim and Lundman (2004). Firstly, the interviews were read through several times to get an overview of the content. Secondly, meaning units related to the purpose of the study were selected. A meaning unit is a part of a sentence, a complete sentence or several sentences containing aspects related to each other based on content and context (Graneheim and Lundman 2004). The third step included condensing the texts, which means that the meaning units were shortened without losing their core content. The forth step was to label each meaning unit with a code, a summary title for a meaning unit. Thereafter, codes with similar content were grouped together into subcategories and subcategories with similar content were transferred into the main category (Table 2). The final step of the analysis procedure was to identify the latent level which, in this case, meant uncovering what was not clearly spoken in the interview text, but rather was a pattern that emerged throughout most of the categories. This was achieved by using higher levels of abstraction to emphasise the content that is most important and abundant to all categories, to shape themes (Graneheim and Lundman 2004).

Author's personal copy J Cross Cult Gerontol Table 2 Analysis procedure Meaning unit

Condensed meaning unit

If you are alone with her and Communication works if you sit alone and sit face to face, you can close, her speech is have a really good dialogue pretty bad but works and I notice in her that I by using sign understand her that she language and understands what I say and movements I can understand her too in sign language, movements and so on, but her speech is pretty bad, but she understands what I say, but still I think we have great communication. . there is no problem

Code

Subcategory

Main category

Verbal language Communication Combination of forms of communication

Ethical Considerations All participants received oral and written information about the study, its purpose and approach. They were also informed that participation was voluntary and that they could withdraw at any time without providing a reason. All data were treated confidentially, which meant that data were stored out of reach of unauthorised persons. Fictitious names were used for participants so they could not be identified. The study was approved by the ethical committee in Linköping University, Sweden (Dnr 03–264; Dnr 02–053).

Results The findings are presented based on similarities and differences in the two kinds of care settings in Sweden, a Finnish speaking group home and a Swedish speaking group home. The nursing staff’s descriptions of daily care and routines at the group homes were comparable, which could be expected since both contexts followed current Swedish regulations. The most salient main categories in the interviews were identified as BCommunication^ and BCultureoriented activities^. BCommunication^ – verbal and non-verbal communication and the importance of a common language. BCulture-oriented activities^ – food and traditions, music and media (Table 3). Table 3 Taxonomy of categorization

Sub categories

Main categories

Theme

Verbal communication

Communication

The Dawn and The Day

Non-verbal communication Importance of a common language Food and traditions Music and media

Culture-oriented activities


Communication The first main category contained the subcategories Bverbal communication^ concentrating on language abilities and limitations, Bnon-verbal communication^ directed towards body language, and Bimportance of a common language^ highlighting the consequences of not understanding and the benefits of having a common language.

Verbal Communication Verbal communication involved the resident having functioning everyday Swedish or speaking their native language but demonstrating and explaining the words to the nursing staff. This resulted in conversations being held alternately in the resident’s native language and in Swedish. The nursing staff had observed that the residents mixed languages or had entirely reverted to their native language. The Finnish speaking nursing staff also felt that language seemed to be more important in the early stages of the disease than later when the residents had lost language as the disease progressed and they could no longer hold a conversation. However, the bilingual nursing staff in the Swedish speaking group home felt that it was important to continue speaking to the residents in their native language, even if their language was incomprehensible and unclear or they had lost their language and did not respond much. The residents still recognised songs, remembered lyrics and prayers as one of the nursing staff described from his encounter with a resident: … and then, that he or she cannot speak or understand anything… still they can start singing… and they remember every verse, yes, we have a lady here, she says her prayers… you might not reach her for maybe the whole day… (Rauno, Finnish group home) Therefore, native language was important for creating contact with the residents and, through language, emotions were affected and conveyed, as were memories. However, the Swedish speaking nursing staff were ambivalent about whether they would have been able to provide better care in a common verbal language. At the same time, they would have liked to have been able to speak the residents’ language, or at least been able to learn some simple, important words. All nursing staff said that as the disease progressed they had to adapt their speech so that the residents could better understand them. This was done by strengthening and clarifying verbal language nonverbally, e.g. looking at and speaking clearly to the resident or repeating what they had to say several times or persisting until they got it right and they reached a common understanding: B… when you talk to them, you do try to be very clear, talk slowly and, like, clearly and so on, so that they have the possibility to understand…^ (Leena, Finnish speaking group home). The bilingual and Swedish speaking nursing staff felt that they achieved functional communication by combining different ways of communicating. They also used a dictionary to make themselves understood in the residents’ native language. Another aspect highlighted by the Swedish speaking nursing staff was that the residents were also sensitive to the non-verbal signals of the staff and that it was important not to show stress, to be calm and speak quietly, wait for a response and allow time for finding words.


Non-Verbal Communication As the language ability of people with dementia worsened, communication became increasingly non-verbal and the nursing staff used more of their body language, for example gestures, tone of voice and facial expressions and, in particular, eye contact, BIt’s hard to say how much they understand, it is clearly visible from their faces and their expressions and so… how they react…^ (Rauno, Finnish speaking group home). The Finnish speaking nurses felt there was a time aspect to understanding the residents. Nursing staff said that it took time to learn to read a human being so that one could interpret them correctly and get an indication from their facial expressions. … and then, when you’ve been working like this for so many years, when you start, you almost know what a person is saying… though he or she may say it wrong… so you know, ah, you mean this? … their expression… says otherwise, for example, if I ask someone do you want more food? And she might answer: yes… but you can see that she doesn’t, and then you respond that you might not want more, you know… yes, expression says a lot… (Tuula, Finnish speaking group home) The nursing staff also demonstrated, pointed and showed, and they tried to guess. … so, one can simply take a glass of water and show it… like… do you want something to drink or do you want… some food or coffee, almost everyone knows coffee … what it is, but it can be stuff like that… (Kerstin, Swedish setting) The Swedish speaking nursing staff considered it important to have clear body language; they used it consciously and they thought that communicating using body language worked. This applied to all of the nursing staff, but it can be assumed that the Swedish speaking nursing staff depended more on body language, since they did not understand the residents’ native language as the bilingual nurses did.

The Importance of a Common Language The nursing staff experienced that the consequences of not understanding each other because of a lack of a common language were that the residents’ needs could not be met. There were misunderstandings and small issues were blown out of proportion. The nursing staff thought that older non-Swedish speaking residents reacted aggressively when they did not understand the language. … She was very aggressive there (Swedish speaking group home)… She did not, in fact, understand what they said… she was very angry… and threw stuff like that, but then when she moved here, she was happy and spirited and talked a lot and laughed a lot… (Marja, Finnish speaking group home) Residents easily became passive and silent in the linguistically alien environment and some withdrew socially. The Swedish speaking nursing staff felt that conversation between them and the persons with dementia was limited because of language difficulties. The Finnish speaking nursing staff in the Finnish speaking group home had also experienced language difficulties


when visiting the hospital with their residents. Language difficulties had also been an obstacle for contact with next-of-kin. The Swedish speaking nursing staff felt that because of language problems residents were perceived as being sicker than they actually were, and that this could result in residents being incorrectly medicated. Another consequence was that when residents were able to maintain their language ability, a lack of stimulus led to disease progression: B… Only the language that stops her… I think the Swedish nursing staff can think she is more demented, because she can’t speak very good Swedish… But since it is not possible. .. to keep up the language. .. then the disease, too, has also gone down. .. deteriorated. .. with her...^ (Tanja, Swedish setting). According to all nursing staff, the benefits of a common language were that nursing and everyday life and activities at the group home operated more smoothly when the non-Swedish speaking residents received instructions in their native language. Another benefit was that language had a positive impact when adapting to new accommodation because people with dementia can easily become confused and anxious by the move to a new environment. The bilingual nurses felt that through the common language residents’ moods were improved, those with dementia became more active, their anxiety decreased and the amount of sedative drugs they were prescribed could be reduced: B… I notice that she becomes very happy when I go to her… for us, she has a lot to tell, when nobody else is in there…^ (Riitta, Swedish setting). The Finnish speaking nursing staff pointed out that language was more important for communication in the early stages but maintained that language was a way to create contact with the residents, while Swedish speaking nursing staff were ambivalent about whether they could provide better care in a common language. All nursing staff were of the opinion that they had to adapt their speech as the disease progressed in order to make themselves understood. Finnish speaking, bilingual and Swedish speaking nursing staff used a combination of ways to communicate. However, from an early stage, the Swedish speaking nursing staff had to use body language, interpret expressions or consult bilingual nursing staff who interpreted the residents’ words. Through the bilingual nursing staff, the Swedish speaking nursing staff learnt more about the residents’ wishes.

Culturally Oriented Activities The second main category contained the subcategories Bfood and traditions^, focusing on being served traditional food, celebrating holidays at the group home, the importance of traditions, and Bmusic and media^, which highlights the importance of familiar music and cultural elements.

Food and Traditions Most of the residents expressed that they appreciated being served traditional food. This occurred in varying degrees in the different types of accommodation. At the Swedish speaking group home, residents were given some traditional food when relatives visited them or they visited relatives, B… There are some special things that she likes which her children bring. It can be both food and things…^ (Inger, Swedish setting). The group home did not routinely


serve traditional food except on special occasions, such as holiday celebrations, if a resident expressed a desire for something special. This was then arranged through the large-scale catering establishment at the home. In the Finnish speaking group home, they served Finnish dishes regularly, several times a week, and the food was cooked by the nursing staff: B… Here, the nursing staff (we) cook the evening meal… the food itself… there [in the Swedish setting] there is more pre-cooked… They serve Finnish food here? - Yes, absolutely… several times a week…^ (Leena, Finnish speaking group home). The nursing staff considered it meaningful that the food served was what the residents had eaten all their life, and which they recognised. In addition, it was believed that traditional Finnish food increased the residents’ appetite and that they ate more. Holidays were celebrated in both homes, but the Swedish group home only celebrated Swedish holidays, while the Finnish speaking group home celebrated both Finnish and Swedish holidays. Relatives often came to visit during the holidays and the residents wore festive clothes. The nursing staff felt that although several of the non-Swedish speaking residents had lived a long time in Sweden and had more or less become B Swedified B, they had noticed that the traditions and habits of the original culture were important to residents: B… and sometimes, someone asks to take a sauna, he talks a lot… and… when will we get a sauna?!… and… we do not have a sauna here…^ (Liisa, Finnish group home).

Music and Media All nursing staff described how the residents appreciated the opportunity to listen to music in their native language, the music was familiar and touched the residents emotionally. Some responded with joy and began to sing or dance along, others were moved to tears. The nursing staff felt that music was important for residents even at a later stage of the disease, B… We… had an old man here, so one of the girls turned on the stereo… And there was dance music… and he started dancing, he was so happy…^ (Marja, Finnish speaking group home). At the Swedish speaking group home, non-Swedish speaking residents listened to the music of their home country mostly in their rooms, or when they went out for music activities with their relatives. … She does like her Russian music… and it has to be one of those happy love songs and this… little rhythm… then she dances a little… so I play a lot of that stuff to her when I’m in there… in her room… (Natalja, Swedish setting) In the Finnish speaking group home, on the other hand, Finnish music was listened to together in communal areas. The nursing staff knew about the residents’ musical culture, could sing in their native language and participated in the Finnish music activities which were organised at the group home. The nursing staff described how a sense of togetherness with the residents was created through cultural elements in the form of radio, television and newspapers. This seemed to be appreciated by the residents B… We all sit watching TVon some Finnish channel… so… well, there is a lot we watch on it…^ (Tuula, Finnish speaking group home). The nursing staff at the Finnish speaking group home felt that Finnish media were important, especially in the early stages of the disease. However, there was some doubt about


what significance the media had when the resident was severely demented. In the Swedish speaking care environment, the residents had access to newspapers and radio programs in their native language in their own rooms, sometimes accompanied by a bilingual member of the nursing staff: B… then there’s a Finnish radio program on the radio… that she listens to…^ (Eva, Swedish setting). In the Finnish speaking group home, the residents had opportunities to take part in culturally oriented activities most of the time. Traditional Finnish food was served regularly at the Finnish speaking group home, while at the Swedish speaking group home, traditional food was served if residents asked for it on special occasions. At both homes, the Swedish holidays were celebrated, but at the Finnish speaking group home Finnish holidays were also celebrated. At the Swedish speaking group home, the residents were able to access music and media in their native language in their rooms on their own or sometimes with a bilingual member of the nursing staff. On the other hand, in the Finnish speaking group home, the residents could experience music and media in their native language in communal areas, which created a sense of togetherness with the other residents and the nursing staff.

Discussion The aim of this study was to describe and compare the experiences of nursing staff caring for older immigrants living with dementia in either a Finnish speaking or Swedish speaking group home in Sweden. The results showed that nursing staff in both contexts felt that communication was an important part of caring. The Finnish speaking and bilingual nursing staff described functioning communication as something that facilitated daily care while the Swedish speaking nursing staff considered non-functioning communication to be an obstacle to care. Having difficulties communicating with Swedish speaking nursing staff but adequately communicating with Finnish speaking nursing staff has been described before (Ekman et al. 1994; Ekman 1996), this has also emerged in this study. When assessing cognitive ability in dementia it is important to have staff with specific language skills and cultural awareness in order to achieve a correct diagnosis (Daker-White et al. 2002). That a lack of communication due to language limitations increased the burden of care for nursing staff has also been described (Plejert et al. 2014). The results from this study showed that a lack of communication led to residents being seen as sicker than they were, residents being over medicated and residents showing behavioural disturbances such as aggression, which in itself may be thought to also lead to an increased burden of care. In addition to language barriers, this study showed that verbal communication was hampered because many of the residents had reached an advanced stage in the dementia. The results showed that a common language facilitated the creation of contact with residents, contributed to reduced use of sedatives and facilitated daily care, something which earlier research has also found (Heikkilä et al. 2007). After moving to a Finnish speaking group home or through contact with nursing staff who spoke the language of the elderly, the elderly seemed to be both calmer and happier, with an increased sense of wellbeing. The older people with dementia were isolated in the community without foreign language skills (Mazaheri 2013; Runci et al. 2005), which the Finnish speaking and bilingual nursing staff described as the residents both being isolated from their environment and from a sense of togetherness with the other residents. They were of the opinion that in a linguistically familiar environment the elderly became more social. Our results also showed that language was important for those in a moderate phase of the disease who had lost their foreign language skills but could still speak; this has also been


described in earlier research (Williams and Warren 2009). As for those with dementia in an advanced phase, the results showed that they recognised music and songs in their native language, and this became a way to reach those residents described by the Finnish speaking and bilingual nursing staff as unresponsive to other methods of communication. In order to provide good care, nursing staff require a linguistic understanding and awareness of the patient’s background (Hanssen 2013; Heikkilä 2004). Older immigrants have specific needs when it comes to health care (Kong et al. 2010) and components of culture appropriate care include culture value elements such as culture, food and music (Hanssen 2013; Lawrence et al. 2010). In some communities, there are multicultural workers who can draw conclusions about the degree of acculturation of the person living with dementia, understand their culture and how their culture may affect care (Boughtwood et al. 2011). The Finnish speaking and bilingual nursing staff knew about the residents’ food and music culture as well as traditions and holidays, and could create opportunities for the residents to take part in them. Elements of the Finnish culture in culturally oriented activities were described by the Finnish speaking and bilingual nursing staff as something that created a sense of togetherness at the Finnish speaking group home among nursing staff and residents but also among residents themselves. At the Swedish speaking group home, a sense of togetherness was created among bilingual nursing staff and residents. Through communication and cultural activities, one could assume that the elderly retained their sense of self and identity more as the dementia progressed. When there is no common language, relatives are an important source of information, providing more information about the older person’s preferences (Runci et al. 2005), as in our study, especially for the Finnish speaking but also the bilingual nursing staff. According to Leininger’s (2002, 2007) culture care theory, nursing staff have to identify values, beliefs, ways of life and symbolic referents and discover culturally-based care with the purpose of promoting and/or maintaining the health and well-being of those in their care. At the same time, it can be difficult for nursing staff to have knowledge about many different cultures’attributes and being sensitive to how they affect the life of the individual patient. Therefore, culture congruent care should also be provided through person-centred care in accordance with the national guidelines in Sweden (SBU 2006). Such care contains aspects such as providing equal care for all and being able to continue to live one’s life, taking into account the culturally based needs of every individual and securing access to health professionals with the same language. Our results confirm Leininger’s theory (Leininger 2002, 2007) about similarities and differences in nursing care, which is particularly visible when comparing the Finnish and Swedish-speaking care contexts. Leininger (2002, 2007) describes the importance of cultural competence to provide culturally congruent care but does not directly refer to the importance of language which in our results instead emerged very clearly. The results make it obvious how important the common language is, not only to be able to communicate with each other, but it is also a key to identifying the cultural values and traditions important for the patient. Furthermore, Leininger (2002, 2007) highlights the importance of promoting and/or maintaining the health and welfare not only of individuals, but of families and groups in a multicultural world and a multicultural population. The group of older people born in Finland who live in Sweden is decreasing, but there will be new groups of foreign-born elderly and their limitations in language will necessitate organisational requirements to create and develop models to take care of them. Nursing staff should provide care that is beneficial, referring to Leininger (2002, 2007) and the results of this study shows that a group home, such as the Finnish speaking one with all its cultural elements, could be important for non-Swedish speaking people living with dementia, who would feel more at home in such an environment.


In metropolitan areas, where there are greater numbers of people with dementia with the same ethnic background, suitable group homes can be created. However, in smaller cities and for smaller ethnic groups, there is not a sufficient basis. In these cases, one can imagine a group of caregivers from different ethnic backgrounds who work flexibly based on those who need their dual expertise. This may be an organisational challenge, but through managers and leaders increasing their knowledge, this may be possible. Another way of meeting the needs of non-Swedish speaking persons with dementia is by providing continuity in care staff who through their skills learn how to interpret and read the body language of the person living with dementia, as demonstrated in the results from the Swedish speaking group homes. Leininger (2007) meant that nursing staff should listen with a very open mind to those who need care, learn from them, and not impose the nursing staff’s own ideas. In previous studies, it has been seen as a fundamental weakness that individuals with the same ethnic origins have been considered as a homogeneous group, neglecting to examine differences within the group (Daker-White et al. 2002). This can be applied to both Swedes and non-Swedes. Equal treatment in this context, care of persons living with dementia, is really the basis for each individual’s needs such as person-centred care. The results of this study showed that the Swedish speaking caregivers felt that they gave all residents the same care regardless of ethnicity, but that communication was limited due to both the disease and the foreign language. The question is whether it is possible to claim that there was equal care for all residents when there were language barriers and, as was shown by the results, there were misconceptions related to language. The Swedish speaking nursing staff stated that limitations in language could be problematic, causing frustration. Nonetheless, health professionals found creative ways of getting through to the non-Swedish speaking residents and solving communication problems, new creative ways to communicate. The care that non-Swedish speaking residents were given in the respective contexts can be likened to experiencing sunrise or full daylight. At dawn, just a few rays reach far enough and there are never as many as in full daylight. At the Swedish speaking group home, residents experienced dawn; there were only brief, occasional rays of effective communication and cultural elements when bilingual nursing staff or Swedish speaking nursing staff who knew the residents well were in service. This may be because the residents had the opportunity to verbal communicate with bilingual nursing staff or listen to music in their native language together with the bilingual nursing staff. It may also be because Swedish speaking nursing staff who knew the residents well could interpret the residents’ non-verbal communication and provide the care they needed and wanted. In the other context, the Finnish speaking group home can be likened to the middle of the day - full sunlight. The nursing staff could communicate with residents in their own language and interpret what little the residents could still say given disease progression. Residents could live with their culture present at the group home throughout their stay, being served traditional food, celebrating all Finnish holidays, and having constant access to music and media in their native language.

Methodological Considerations As this study aimed to describe lived experiences from the perspective of the nursing staff, a qualitative approach was considered more capable of capturing a deeper understanding of the phenomenon within a context than quantitative questions would have. Data for the study consisted of interviews which made it possible to describe and compare the nursing staff’s


experiences in their own words; the data remained close to their own past experiences. A strategic selection of participants made it possible to capture the experiences that provided answers to issues which were in need of being described. A disadvantage of strategic selection could be the limitation in variations of experiences as the participants had a lot in common through their shared background and workplace in the Finnish speaking group home. Nevertheless, variation was achieved by including the bilingual nursing staff at the Swedish speaking group home. Using content analysis as the method of analysis provided an opportunity to describe the variations in experiences. During the analysis process, the authors strived both to stay close to the text itself and to see its latent content. To enhance trustworthiness, both authors discussed the abstracted content regarding the labelling of subcategories and categories. In addition the analysis process have been described as thorough as possible. A limitation of the study could be the selection of participants, who were members of a relatively well integrated group of immigrants. If a less integrated group had been selected, the results could have been different, as we can see among the Swedish speaking nursing staff.

Conclusion For those living with the cognitive impairment associated with dementia, all aspects that remind them of who they are and who they were are important for helping them to retain personhood and their identity. One way of accomplishing this could be by taking into account the language and culturally based needs of every individual, which also provides personcentred care. In this study, the Swedish speaking nursing staff could provide qualitative and equitable care, but it was a greater challenge for them than for the bilingual nursing staff who spoke the same language as the residents. The result confirms Leiningers Culture Care theory that there are similarities and differences in nursing care. The Finnish-speaking nursing staff did understand what it was like to be Finnish and Finnish-speaking whereas the Swedishspeaking nursing staff did not have the same knowledge of the residents. Thus the immigrants’ needs could not be satisfied to the fullest. In the near future, the number of groups of foreignborn older individuals with dementia with needs related to language can be expected to increase. On an organizational level, this requires developing alternative care settings to meet both multicultural and individual needs. Acknowledgments The current study was supported by The Dementia Association (Demensförbundet) in Sweden and Mälardalen University in Eskilstuna – Västerås, Sweden. Compliance with Ethical Standards Conflict of Interest The authors declared no conflicts of interest with respect to the authorship and/or publication of this article.

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