The Well-Being of People with Dementia in Sweden and Hungary from the Perspective of Relatives: A Qualitative Interview Study

Background . Dementia not only has a negative efect on a person’s well-being, but it also afects the well-being of their relatives. In this study, we examined how relatives perceive the well-being of people with dementia who live in nursing homes and how nursing staf contribute to the well-being of the residents they care for. Method . A qualitative study with a phenomenographic approach was applied. Ten individual semistructured interviews were conducted, fve in Sweden and fve in Hungary. In this study, the COREQ checklist for qualitative studies was followed. Results . Te perceptions relatives had of what constituted well-being resulted in fve categories of factors that could impact negatively or positively on a person’s well-being: “ Nursing care is adapted to the needs of the person with dementia ,” “ Nursing is carried out by a sustainable care team ,” “ Te social needs of the person with dementia are met ,” “ Te person with dementia participates in meaningful activities, ” and “ Te person with dementia shows signs of feeling well .” Conclusion . From relatives’’ perspective, well-being can be created for people with dementia if nursing is person-centred and managers allow staf more time to socialize with the person with dementia. Relatives are essential cooperative partners in person-centred dementia care. Relevance to clinical practice . Person-centred care is essential. Relatives, nurses, and managers are important partners in making it possible. Competence in dementia and knowledge of values and ethics are needed to provide autonomy and well-being. Patient or Public contribution . Ten relatives were selected through purposive sampling. In Hungary, the relatives were invited to take part in the study and given information about it by an operational manger. In Sweden, this process was carried out by a dementia nurse. Transcribed content of semistructured interviews was analyzed using a phenomenographic method.


Background
More and more people are living longer, and the proportion of the population over 65 years is increasing both in Sweden and Hungary [1,2].
Dementia has a negative efect on a person's quality of life and well-being [3]. Vince et al. [4] underlined that the psychological and social aspects of a person's life were crucial for the experience of well-being for people with dementia. Well-being could be maintained if those with dementia were able to maintain their previous lifestyle as much as possible and maintain a sense of identity.
When a person sufers from dementia, relatives are also afected by the disease [5]. Dahlrup [6] described how the relatives of people with dementia often experience a stressful life situation, due to constantly having to support the person with dementia. By close collaboration between family members and caregivers which is the basis of person-centred care, family members can not only share and receive personal but also professional knowledge. Tis in turn leads to an improvement in the daily life of the person with dementia in a nursing home [7,8].
People with dementia often sufer from various behavioural and psychological symptoms of dementia (BPSD) [9]; in fact, 80-90% of people with dementia have some form of BPSD [10]. Symptoms of BPSD can be delusions and hallucinations and also behavioural issues such as shouting, anger, screaming, confusion, suspicion, and disturbed circadian rhythm [11]. Tere is no general treatment for BPSD; thus, the symptoms must be identifed, interpreted, and seen in their context before measures are proposed [12]. According to Maki et al. [9], person-centred care is the best method of care for both care recipients and family members. It is planned interprofessionally with the family based on the person's life story [13]. Person-centred care leads to lower levels of BPSD and increased well-being, particularly in older people's care and among people with dementia [14].
Studies have shown that dementia and well-being can be reconciled. By having a person-centred approach, where the needs of the people with dementia are in focus, better care can be provided. It is essential to ask for and use the perspective of family members since relatives can support caregivers in their care work. Terefore, the aim of this study is to describe how relatives perceive the well-being of people with dementia who live in nursing homes in Sweden and Hungary.

Study Design.
Empirical qualitative inductive research method was chosen, using semistructured interviews conducted in Sweden and Hungary and analysed by using a phenomenographic approach. Tis study followed the COREQ checklist for qualitative studies.

Sample.
A total of ten relatives were interviewed (for characteristics see Table 1). Te participants were selected through purposive sampling performed by a dementia nurse in Sweden and by an operations manager at a nursing home in Hungary. Te criterion for inclusion in this study was that the participants were related to a person diagnosed with moderate or severe dementia and that the person with dementia had been living at the nursing home for at least six months.

Setting.
In Sweden, four interviews were conducted in a separate location at the nursing home where the person with dementia lived and one was performed using digital communication due to the COVID-19 pandemic lockdown. In Hungary, four interviews were performed using digital communication due to the COVID-19 pandemic lockdown and one in a separate location at the nursing home.

Data
Collection. An information letter and consent form was sent to the nurse responsible for the dementia care in the municipality in Sweden and a manager at the nursing home in Hungary. Te interviews were semistructured and lasted between 20 and 40 minutes each, and an interview guide was used. Te interview guide contained four open questions which focused on well-being.

Data Analysis.
Te recorded interviews were transcribed after all interviews had been completed. Te material was then condensed by each interviewer separately. Te authors analysed the material together. A phenomenographic analysis was carried out according to the following steps [15]. Te transcribed material was read thoroughly so that the authors got to know the material. Te material was condensed, and the most relevant statements in the material were selected and then compared. Elements which appeared similar were grouped into categories. Articulation was then made to describe the essence of each category. Appropriate names were chosen so that the categories were labelled. Te labelled categories were contrasted with each other in relation to similarities and diferences.

Results
Te analysis resulted in fve qualitative descriptive categories that describe how relatives perceive well-being of the person with dementia (Table 2).

Nursing Is Adapted Based on the Needs of the Person with
Dementia. All the participants perceived that if the nursing care is adapted based on the needs of the person with dementia, the person with dementia experienced well-being. If the person with dementia showed signs of feeling good, this indicated that the caregivers had noticed the needs of the person with dementia and their situation. But the participants wanted the caregivers to pay more attention to symptoms of ill health and inform the relatives about this to a greater extent than what was currently done. In Hungary, it was considered that increased confdence in the caregivers could arise when they listened to the relatives and could give a more detailed account of how the person with dementia was doing.
"So, if you see that your mother is okay /. . ./. Ten it's soothing, yes. Because it means that they are aware of how she is." (Hungarian participant 2). Te Hungarian informants expressed shortcomings in meeting the basic needs of the person with dementia. Te assumption was that the caregivers were not able to detect whether the person with dementia needed new clothes or help with feeding. Te fact that the basic needs of a person with dementia were not met by caregivers was perceived having a negative impact on the well-being of a person with dementia.
"/. . ./ he had been wearing the same T-shirt for fve days, a dark green, short-sleeved T-shirt. Not his at all /. . ./. No long sleeves, even though I have left warm clothes." (Hungarian participant 5).
If caregivers had an empathetic and professional approach, this had a positive efect on the well-being of the person with dementia.
Tings that were perceived as professional by the informants were when the caregivers were happy, could joke, and could deal adequately with difcult behaviour from the person with dementia.
"He likes when caregivers speak with "straight pipes" and he likes to joke, he needs that kind of personality around him to feel good." (Swedish participant 10).
According to the participants, it was important for the well-being of the person with dementia that caregivers had come to know the care recipients and their life story. When the caregivers knew their life story, they could avoid situations where the person with dementia became angry or upset.
"/. . ./ if someone has had difcult experiences, the staf knows this, and they can be more careful when they take care of them." (Hungarian participant 3).
Particularly important for the well-being of the person with dementia was the fact that the caregivers motivated and encouraged the person with dementia to participate in joint meals or other activities at the nursing home. Te participants believed that this should be done even if the person with dementia did not want to participate in the activity. In Sweden, the participants believed that it was possible to motivate the person with dementia by being happy and radiating positive energy around them and that this approach had a positive efect on the well-being of the person with dementia. Te Swedish participants emphasized, however, that the staf must also respect the fact that sometimes the person with dementia did not want to participate and displayed this. In Hungary, on the other hand, it emerged that participants felt that the person with dementia should not always decide for themselves whether or not they would participate in activities.
"/. . ./ once my mother said she did not want to go, it was decided that she would stop going there. It should not be left to them (the decision), the staf should exert a little more pressure /. . ./. She was never allowed to go on excursions even though I paid for it." (Hungarian participant 1).
From both countries, the participant said that the autonomy of the person with dementia was not always respected. In Hungary, this could be refected in the staf pulling up the bed gates so that the person with dementia could not get out of the bed and in Sweden that the person with dementia was not allowed to choose their clothes themselves. Te informants said that the person with dementia found it frustrating when they did not get or could not do what they wanted anymore after moving into the nursing home and that they were dependent on help from others. "/. . ./ what can increase well-being is if they can be as independent as possible /. . ./. as in my mother's case who does not realize that she cannot go to the toilet herself. It is the lack of independence that is difcult for her to accept." (Swedish participant 9).
In the Hungarian interview, the perception was that the caregiver's view of their work afected the well-being of the person with dementia. If the caregivers had empathy and did their work in a good way, the participants had confdence in the staf, which in turn had a positive efect on the well-being of the person with dementia. When there was a specifc person in the care staf who was responsible for the person with dementia, it had a positive efect on the well-being of the person with dementia.

Nursing Is Carried Out by a Sustainable Care Team.
Tere was consensus among the participants regarding the infuence of the team of caregivers on the well-being of the person with dementia. Te participants "praised" the caregivers and felt that they were doing a good job, but that shortage of staf resulted in shortcomings in nursing care. It could result in the person with dementia not receiving stimulus or outdoor activities as they needed and a stressful workload for the carers. Te participants felt that, in a dementia nursing home, "life" should be a little slower; thus, it takes more time for people with dementia to do things. "/. . ./ there is not enough staf to take them out in the garden and stay with them there for support and supervision." (Hungarian participant 4). A high rate of staf turnover with lot of temporary staf had a negative impact on the well-being of the person with dementia. Te Swedish participants emphasized that it was not appropriate to have a lot of temporary staf in a dementia care nursing home. It was important that person with dementia had caregivers they recognised and that the caregivers knew the person with dementia. It was also very important that the caregivers worked according to the same routines. Tey must have the same people around them.
"Tere have been a lot of new staf last year and then the old people get very worried." (Swedish participant 8).
Some dissatisfaction was expressed by the participants in Hungary who felt that the caregivers could do more for the person with dementia as relatives pay a fee for the care provided. Te participants in Hungary also emphasized the importance of management presence, competence, personal qualities, and leadership skills, as these had a great infuence on the staf's working methods and working conditions in the nursing home.
"Te attention and competence of the management is what is most important." (Hungarian participant 1).

Te Social Needs of the Person with Dementia Are Met.
If the social needs of the person with dementia were met, this could create well-being. Tis could be achieved, for example, by having the caregiver close by, providing comfort and holding hands. Te interviews revealed that companionship was important for well-being and that the most important aspect of companionship was being able to talk to others and be part of a group.
"When you can sit down and talk to him, to sit like this and talk, that he loves. To be able to talk a little about old times and the people he remembers." (Swedish participant 10).
Visits by relatives could lead to well-being, and this was also something that the participants from both countries agreed on. According to the participants, those with dementia appreciated visits and seemed happy when they saw relatives. Te participants also described how the person with dementia was able to show that they missed their relatives. Due to the restrictions in the community caused by the COVID-19 pandemic, relatives had not been able to see the person with dementia as much as before. Relatives perceived that this could lead to the person with dementia forgetting about them or feeling lonely. "/. . ./ when he has not been allowed to meet anyone for a long time, it has been difcult. It's almost like he's forgetting them. It is not kept alive" (Swedish participant 8).
In the Hungarian interviews, they expressed a desire for the institution to create more options for socializing for people with dementia. Tis emerged as a result of the COVID-19 restrictions in the community.

Te Person with Dementia Participates in Meaningful
Activities. Te participants agreed that meaningful activities for people with dementia could create well-being. Te meaningful activities consisted of activities based on the interests of the person with dementia. Te activity could consist of going outside, playing games, looking at photos, and reading books. Te participants believed that if the person with dementia was stimulated, their cognitive abilities would not decrease as quickly as they did without stimulation.
Outdoor activities could create well-being for the person with dementia according to the participants. For example, being able to sit on a nice patio or in the garden was perceived to create a sense of well-being for the person with dementia. Te participants felt that the person with dementia was happy when going outside and that being outside could have a calming efect.
"She was a gardener /. . ./. She loves nature very much. And it so happened that her new room was the second room from the garden /. . ./. It gave a positive efect which was very good. Already the second day she cleared the weeds." (Hungarian informant 3).
It was also important to spend time outdoors so that the person with dementia would not experience isolation.
"Because you have to get out, you have to get some fresh air. And get other sights and sounds than what you get in here. Because otherwise you become so totally isolated." (Swedish participant 9).
Tere was also a consensus in both countries that entertainment could create well-being for the people with dementia. Entertainment could consist of various group activities such as music, singing, drawing but also reading loud or participating in dog or music therapy as the Hungarian participants mentioned. However, the participants indicated that all group activities were currently paused due to the restrictions imposed by the COVID-19 pandemic.
Entertainment could also consist of spontaneous activities such as going out into the garden, watching TV together, or putting on some calm music when the person with dementia was going to rest. Calm music in the common dining room could result in the person with dementia starting to talk to other people. Music could also lead to a sudden return of mobility in person with dementia who had previously been barely able to move. Physical activity and movement were also something that informants felt could lead to well-being in the person with dementia, as was evident in the interviews in Sweden. However, the participants felt that physical activity did not happen to the extent that they would have liked and that physical functions decreased if the person with dementia was not allowed to move. "He could even talk when he was allowed to move. It takes everything away when you are not allowed to move." (Swedish participant 6).

Te Person with Dementia Shows Signs of Feeling Well.
Te informants described various signs that indicated that the person with dementia was experiencing well-being. Tese signs included when the person with dementia was perceived as happy when they laughed or described in words that they were having a good time.
"He has gained weight, so he is happy, he is well and happy. And the staf also say that he is a good and happy old man" (Swedish participant 10).
Te participants also described various signs that indicated that the person with dementia was experiencing anxiety. Anxiety could arise in the person with dementia if someone disagreed with them or if there was a very noisy environment around them. A sign of anxiety was when the person with dementia showed signs of depression. Tis could be manifested by them calling their relatives and crying and complaining. Other signs of distress described were when the person with dementia was "fussy" or had "sleeping days" and when the person with dementia showed signs of suspicion or jealousy.
"She says that she thinks there is another lady here at the accommodation that dad longs for. /. . ./ then she's sorry for that." (Swedish participant 9).
Various impairments related to dementia had a negative impact on the well-being of people with dementia, according to the participants in Sweden. Tis could be that the person with dementia was unable to express themselves adequately or felt that those around them did not understand what they were saying.
"She is probably sufering deep down, perhaps still from not being able to express what she wants." (Swedish participant 7).
Participants also described how the well-being of the person with dementia was negatively afected by their impaired senses and that this could lead to isolation.

Discussion
Well-being, according to the interviewed relatives in this study, could arise if caregivers customized the nursing work according to the needs of the person with dementia. Tis result is consistent with the person-centred care, in which healthcare staf should have a person-centred approach in which the person's needs are central [16]. In this study, one of the needs that the person with dementia had could be that the nursing staf had knowledge about the resident's life story in other to be able to customize the care and treatment for those residents based on this knowledge. A patient's life story is one of the key components in person-centred care [17]. Woods and Subramaniam [18] concluded in their study that if the nursing staf know about the life story of the person with dementia, it is easier for caregivers to understand the person with dementia, and Cooney and O'Shea [19] believed that this made it easier to counter BPSD. Te results of this study can also be linked to the research of Cooney et al. [20] that showed that if the care staf base their work on the life story of the person with dementia, the interaction can feel enjoyable and create meaning for both the person with dementia and the care staf. Nursing work based on a person's life story should be a guide in the care work and thus leads to improved well-being and health for both the person with dementia and the care staf and indirectly also for relatives.
It appeared that the person with dementia did not always get their basic human needs satisfed and that impacted negatively on the well-being of the person with dementia. Te results are regrettable and were largely because the care staf could not identify the needs of the person with dementia. Most people who work in older people's care are nursing assistant with a shorter theoretical education in nursing or are staf without any nursing education [1,12]. In several studies [21][22][23], it has been shown that professional development among care staf can lead to the care recipient's quality of life and patient safety improving. Socialstyrelsen [12] also explains that in order to provide good care and attention to people with dementia, care staf need specialised skills in the area. In order for the care staf to be able to deliver person-centred care and pay attention to the individual needs of the person with dementia, it is recommended that an increase in the competence of the care staf is needed. Professional development of care staf should create conditions for the person with dementia to get their needs satisfed and therefore have the opportunity to experience well-being.
Te results showed that well-being can be achieved when the social needs of the person with dementia were satisfed. Lawrence et al. [24] concluded in their study that the most appropriate way to spend time with people with dementia was one by one, especially with persons with advanced dementia. Edvardsson et al. [25] researched the closeness of people with dementia and found that if the care staf was close and had a positive and person-centred way with a "cordial," "warm," and "fun" approach, this had a positive efect on the well-being of those with dementia. Bollig et al. [26] described that the well-being could be strengthened if the care staf created conditions for social interactions. Te relatives wanted the person with dementia to get more visits from family and friends as it could otherwise lead to the person with dementia to forget them and that the person with dementia felt lonely. Adnanes et al. [27] confrm in their study that it is important for mental well-being that care recipients maintain relationships with their families and friends. It is thus considered important for the informants that the care staf have the opportunity to spend time with the person with dementia. In addition, the care staf should have an easygoing and empathetic approach and those with dementia Health & Social Care in the Community 5 are given the opportunity to maintain their social contacts in order to maintain well-being. In this study, it was considered that well-being could be created if the person with dementia participated in activities that were meaningful. Tis was something that the relatives wanted the person with dementia to get more of. Istvandity [28] describes in their literature review that entertainment had a positive impact on the mental well-being of people with dementia. Te entertainment could create reminiscence and conversations, which was confrmed in the interviews from Hungary where the relatives said they thought that calm music in the dining room contributed to conversations arising between the care recipients. Te informants in this study expressed a desire for the person with dementia spending more time together with their carers. Physical activity and being able to move around were perceived as important for the well-being of the person with dementia. Physical activity can lead to improved health and reduced use of medication in people with dementia [29].
Te results of the interviews showed that all relatives believed that having a sustainable care team had a positive impact on well-being of the person with dementia. Te relatives believed that there were too few care staf and that in the event of a shortage of staf, many diferent and untrained temporary staf were used. Tis could result in care staf not being able to provide good care. In dementia care, it is important to strive for continuity where the person with dementia does not encounter too many diferent people during everyday life [12]. Te results showed that leadership was important and that the presence of management had a decisive role in the quality of care as the informants believed that it creates order in the care work structure. Research by Rokstad et al. [30] showed that a management style that is focused on people and relationships is associated with higher job satisfaction. Such management leads to an increased desire to remain at their current workplace and providing better care for people with dementia. Te same research also showed that if the manager of the nursing homes took an active part in the care, the care staf saw them as role models [30]. A relationshiporiented and present leadership seems to be preferable in dementia care as it increases the volition of the care staf to remain in the workplace, which in turn leads to less need for temporary staf.
Tis study showed that relatives felt that the person with dementia experienced well-being when they showed outward signs of feeling well. Te result can be compared with the approach that Nordenfelt describes that "when you feel good, you are healthy" [31], p. 31.), when the person with dementia showed signs of feeling well, the relatives experienced the person with dementia as healthier. Health can be explained as a person's mental and physical condition that is often characterized by the person's well-being and usually the person's ability to achieve their goals in life [31]. One way for the person with dementia to experience well-being is when the care staf work to retain their sense of identity and to create the opportunity for the person with dementia to maintain his or her previous lifestyle as much as possible [4]. Te results of this study also showed that malaise could occur, and it is considered by the authors of this study that it is important to work preventively so that malaise does not arise. By using the life story of the person with dementia, it may be easier to understand the person with dementia [18]. Symptoms, such as anxiety, must be interpreted and seen in context before appropriate measures are decided [12]. In order to create appropriate treatment strategies, it is important to involve relatives [24]. Tus, it is considered important that the care staf can work in a person-centred way, which enables the person with dementia to achieve their set life goals. If the care staf is working proactively, with the support of the life story and relatives' perspective, measures and strategies can be developed for managing people with dementia that are showing signs of malaise. Trough such work, the person with dementia should be able to experience well-being instead of malaise.

Strengths and Limitations.
Te trustworthiness of this study has been ensured in several ways. It has been sought to refect the participants' perceptions of well-being as closely as possible to the participants' descriptions. Credibility was increased by the fact that the data collection process was written down and carefully followed. Credibility was confrmed by reviewing and evaluating the design and analysis of the study repeatedly during the course of the study by all authors jointly. Te informants varied in their characteristics regarding their diferent relationships to the person with dementia, their diferent ages, and their diferent gender. Te variation that occurred was not something that was predetermined and was not part of the inclusion criteria but may have contributed to the credibility of the study. Te condensed data were analysed and interpreted by all authors continuously which may have strengthened the credibility of the study. Te interviews provided adequate and appropriate transcribed text and quotations which may have contributed to the confrmability [32]. Since the recorded material was transcribed and condensed after all the interviews were conducted and not immediately following each interview, the authors may have reduced the risk of bias infuencing the subsequent interviews. Te characteristics of the informants have been presented, and the process by which the informants were selected has been outlined. Te context in which the interviews were conducted has also been described. Tanks to this information, the results of this study could be transferable to other contexts [33]. Te dependability of the data material, mainly in the category of "Te social needs of a person with dementia are met," may have been more obvious because of the COVID-19 pandemic due to the lack of social contact. Tis can be seen as a weakness of this study.

Conclusion
Tis study provides a basis for the adaptation and ultimate improvement of older people's care. In so doing, it can also contribute to more cost-efective dementia care. Well-being can be achieved for people with dementia if their care is person-centred and based on their life history. Relatives are an important partner in the development of a more personcentred dementia nursing care.

Relevance to Clinical
Practice. Professional caregivers need to demonstrate an increased awareness of the care recipient's life history and to make this life history central to their nursing practice. Tey should also look to develop their professional competence so that they can identify the needs of people with dementia and meet them appropriately. Managers should create a care system that allows their professional caregivers to spend quality time with the person with dementia and create good relationships in dementia care so that there is continuity within the work team. Quality time should involve the greater participation of the individual's relatives. Caregivers need to be aware that nursing means supporting the maintenance of social contacts. Developing a set of core values and competences for care providers within dementia care in both Sweden and Hungary is necessary.

Data Availability
No data other than those contained in the study's interview material were used to support the fndings in this study.

Consent
All participants gave their consent regarding the publication of the study.