The life situations and identities of spouses of individuals with dementia (Høgsnes, Melin-Johansson, Norbergh, & Danielson, 2014) and their adult children (Høgsnes, Norbergh, Danielson, & Melin-Johansson, 2016) are affected before and after their family member relocates to a nursing home. Family caregivers want the individual with dementia to live at home for as long as possible (Svanström & Dahlberg, 2004); however, when the burden becomes excessive, they must make the difficult decision to place their relative in a nursing home (Bramble, Moyle, & McAllister, 2009; Crawford, Digby, Bloomer, Tan, & Williams, 2015). The focus of encounters between nursing home staff and family caregivers must be placed on developing a trusting relationship combined with personalized interventions (Karlsson et al., 2014).
The number of individuals with dementia is increasing. In 2015, this number was 47 million worldwide and is estimated to increase to 132 million by 2050 (Prince et al., 2015). In Europe, the number of individuals with dementia is 11 million (Prince et al., 2015), with approximately 160,000 of these individuals living in Sweden (Wimo et al., 2014). The number of individuals older than 65 who live permanently in nursing homes has also increased (The National Board of Health and Welfare [NBHW], 2014). This number of individuals is even higher when family members are included (World Health Organization [WHO], 2012), as “dementia doesn't just affect individuals. It also affects and changes the lives of family members” (p. v).
A new life situation begins for family caregivers after their relatives relocate to a nursing home, as they sometimes experience anger, depression, and anxiety (Eloniemi-Sulkava et al., 2002). Many family caregivers have poor physical and mental health (Gaugler, Reese, & Sauld, 2015) and oscillate between different emotions, such as guilt, grief, loneliness, acceptance, and feelings of freedom, which affect their existential life situation (Bökberg, Ahlström, Karlsson, Hallberg, & Janlöv, 2014; Graneheim, Johansson, & Lindgren, 2014; Høgsnes et al., 2014; Høgsnes et al., 2016). The term existential was developed by Yalom (1980) to define a condition common to all human beings, irrespective of culture or religion, and constitutes the ultimate concerns of life—meaning, isolation, death, and freedom. Existentialism includes the human preconditions that individuals are forced to face (van Deurzen, 1988; van Deurzen & Kenward, 2005; Yalom, 1980). In secularized countries such as Sweden, secularization includes religious or spiritual dimensions or a purely existential dimension. Some individuals find answers to existential issues in spirituality and/or belonging to a religious communion (Stark & Bainbridge, 1985). In the current study, existential and spiritual are not used synonymously.
Many family caregivers blame themselves and regret making the decision to place their relative in a nursing home. After relocation, family caregivers' roles shift, from having total responsibility of care to checking and ensuring quality care at the nursing home (Graneheim et al., 2014). Family caregivers need support as well as help from nursing staff to manage their relationships with individuals with dementia (NBHW, 2016).
In Sweden, the care of patients who are severely ill and dying has gradually moved from hospitals to nursing homes or the home (NBHW, 2016). In nursing homes, RNs are responsible for providing nursing care along with assistant nurses (ANs), and sometimes find their roles physically and emotionally demanding (Talbot & Brewer, 2016). High-quality medical and nursing care should be provided to those affected, including the family (WHO, 2012). Staff at nursing homes believe it is unnatural to talk about death with residents and family caregivers. Nursing homes are often perceived by family caregivers as the waiting room for death (Ericson-Lidman, Renström, Åhlin, & Strand-berg, 2015), and talking about the future and death is diffi-cult (Seiger Cronfalk, Ternestedt, & Norberg, 2017). Family caregivers need more precise information and better communication with staff about end-of-life issues (Kaarbø, 2011).
The growing number of individuals with dementia makes it important to understand how staff at nursing homes and family caregivers interact, and how staff experience family caregivers' existential life situations, encounter family caregivers, and understand their own role and responsibility. Family caregivers have valuable knowledge about the negative and positive experiences from before and after relocation to the nursing home that affect their life situation. They need to process situations that occurred before relocation and their doubts about moving their relative to the nursing home. Nursing staff are natural speaking partners, and initiating dialogues with family caregivers about their existential life situations could be supportive in promoting family caregivers' health and well-being. The aim of the current study was to explore nursing home staff's understanding and how they approach family caregivers' existential life situation when caring for individuals with dementia.
Two nursing homes located in a municipality in a rural area of Sweden were included. One nursing home has 24 one-room apartments, and the other has 32 one-room apartments. They are similarly structured, where the family could furnish the apartment to suit the needs of the individual with dementia. A common area is available for eating and socializing. Both nursing homes admit older adults with major care needs with a variety of diagnoses, including dementia. The nursing homes are staffed by RNs and ANs who provide around-the-clock care, which includes medical care provided by RNs and help with practical things, such as cleaning and laundry, provided by ANs.
To ensure that information-rich data would permit a deeper understanding of the phenomena (Patton, 2015), participants were selected using purposeful sampling. The municipality health care manager generated further contact with two heads of departments interested in having staff involved in the study. The first author (L.H.) took part in a staff meeting where nurses were given verbal and written information about the study. After the meeting, nurses indicated their interest in participating in the study by returning a form. Inclusion criteria were: minimum 1-year experience of caring for individuals with dementia and being a RN or AN. Two RNs and 18 ANs agreed to participate (N = 20, 10 from each nursing home).
Face-to-face interviews were conducted by the first author with open questions: “Please tell me how you understand the life situation as a family caregiver to a person with dementia?” and “Please tell me how you approach existential issues in the encounters with family caregivers?” Participants were encouraged to speak freely about their experiences, and to achieve depth in the interview, follow-up questions were asked, such as “Can you tell some more?”, “What do you think that meant?”, and “Can you explain that further?” The audio recorded interviews were held in a private room at the nursing home and lasted 20 to 50 minutes.
Interpretative Content Analysis
The transcript interviews were analyzed with interpretive content analysis based on Baxter's (1991) thematic analysis. Interpretation allowed the analysis to go beyond the surface and discover what was said between the lines of the descriptive data (Patton, 2015), searching inductively for recurring codes and themes (Baxter, 1991). Four stages of theme development were used to structure and validate the thematic data analysis according to Patton (2015): (a) initialization—interviews were read through several times and reflective notes were recorded to deepen and focus the understanding of the material; (b) construction—codes were constructed in a creative process to discover patterns and relationships in the material; (c) rectification—the analysis was reappraised by working back and forth between interviews, reflexive notes, codes, and preliminary themes and subthemes; and (d) finalization—the analysis process was reviewed again and finalized.
All authors were involved in the analysis and interpretation process, from reading the interviews to the final step in which themes were discussed and reformulated until consensus was reached.
The ethical committee at the Mid Sweden University approved the study.
Data are described within one overarching theme, three themes, and nine subthemes. Each theme is illustrated with participant quotations to validate the themes.
Nursing Staff “Being in Between” in Encounters With Family Caregivers to Ease Their Existential Life Situation
The overarching theme from the analysis of the text encompasses three concepts: being in between, support, and supportive. Nursing staff act as supporters in encounters with family caregivers to individuals with dementia to facilitate their existential life situation, supporting them as much as possible while allowing them to do their part in relation to their ill relative. The themes and subthemes are presented separately below, with each theme corresponding with another and all being interconnected.
Being an Advocate
Creating a Secure Space. Nursing staff experienced family caregivers' insecurity about having their parent or spouse at the nursing home, particularly if there were problems or the individual with dementia seemed to be sad or depressed. Therefore, providing a feeling of security was an important part in easing family caregivers' existential life situations, as one participant stated: “Now we take over, and we are here to help you.”
The relationships between the individual with dementia and family caregivers' life situations improved when staff took over responsibility for daily care and if staff got to know the individual with dementia. Taking over care and getting to know the relative facilitated family caregivers' life situations, making it easier for them to endure the situation knowing nursing staff wanted the best for their relative. Staff wanted the nursing home to be a place where the family knew their relative was in good hands and they could release some of the obligation they were feeling. Staff were aware that by creating a home-like environment, the nursing home could be a secure and safe place to live.
Acting as a Protective Filter. Family caregivers sometimes needed protection from embarrassing or awkward situations caused by their relative with dementia. These situations comprised ill individuals having aggression toward the surroundings, if they screamed, or if they undressed in public. By holding back information from family caregivers, staff believed they were protecting them, as one participant stated: “They do not need to know everything, then they probably would have quite a shock.” Staff tried to be a filter between individuals with dementia and family caregivers to protect them from feeling shame and guilt and shield them as much as possible. Because of staff's ability to be professional, they could distance themselves and manage incidents of “awkward situations” with the intention of filtering what they disclosed to family caregivers, as one participant stated: “If you work here within this area [dementia care] you can handle it, and it is not my family member, it is theirs.”
Dealing with Sensitive Situations. Nursing staff sometimes avoided talking with family caregivers about sensitive issues (e.g., oversexed behavior), knowing and respecting the fact that family caregivers did not want to talk about these issues. One participant stated, “Usually it is the wife since it often is the man…and then you think to yourself, but you never go asking because if they want to tell you they do and if not, they don't.” In these situations, nurses used their competence and experience to support family caregivers emotionally. To provide support, nurses needed as much information as possible regarding different behaviors and life situations of individuals with dementia before they moved to the nursing home. If staff believed it was too difficult for family caregivers to talk about the time before the move to the nursing home, they deliberately avoided these conversations to avoid feelings of guilt. The consequence of this could be that staff, out of respect for family caregivers, did not invite them to talk about sensitive or difficult situations.
Managing Feelings of Powerlessness
Being a Vessel and Harboring Frustration. Family caregivers' feelings of powerlessness were often expressed as anger or irritation and were related to what the staff expressed as “trivialities.” One participant stated, “If the family caregiver came in and found dust in the [individual with dementia's] room it may become the world's commotion.” In these situations, staff were scolded and family caregivers displayed anger, which may be related to the idea that family caregivers had given up or transferred the responsibility of their relative to nursing staff. Although staff had to endure unjustified criticisms, they described how they understood that family caregivers needed their support in stressful situations, as one participant stated, “It represents something else. Often it is bad conscience, or it could be frustration.” Nursing staff described how they tried to support family caregivers by giving them advisory and psychological support, bearing in mind that family caregivers' frustration was never meant to be personal accusations, but rather an expression of feeling powerless.
Providing Good Nursing Care to Instill Hope. Nursing staff expressed the importance of keeping individuals with dementia clean and well-groomed as well as keeping their apartment tidy when family caregivers came to visit. Staff were afraid that family caregivers may think that they did not manage to provide good nursing care. One participant stated:
Some individuals with dementia often get unclean…then I have to help them change clothes immediately because it would not be so nice for the family caregiver when they visit if the person with dementia has food scraps on their clothes, urinated on themselves, or something else…. No, that is not good.
Nursing staff reflected on what family caregivers may see when they enter the nursing home (e.g., patients sleeping in their wheelchairs, a resident who had fallen and been injured before staff had the chance to respond). Staff believed certain situations could look like mistreatment, but at the same time they knew that these were incidents that sometimes happened; however, staff did not want to be perceived as being uninvolved and careless. To uphold family caregivers' satisfaction, nursing staff strived to maintain high-quality nursing care. One participant stated, “If they see the person with dementia doing well in their environment and everything, then I think it is easier for them to also feel that she/he are doing well. That is high-quality nursing care, and that is good.” Nurses believed that providing high-quality care was a supportive action that influenced family caregivers' ability to relax and find hope in the situation.
Initiating Stress-Free Visits to Comfort Feelings of Guilt. Nurses perceived that family caregivers sometimes felt stressed when they visited the nursing home. Family caregivers' visits to the nursing home should be joyous and not burdensome (i.e., awakening feelings of guilt). Staff initiated dialogues with family caregivers in which they explained there was no expectation regarding how often and when they visited their relatives. Nurses believed family caregivers based their visit to the nursing home on what they could manage in terms of their situation, energy level, and ability to cope. One staff member described communicating with a family caregiver who was struggling during visits with her mother whose personality had completely changed: “You can come and visit when you think it is good for you, and not because you feel obligated.” Visits should not be burdensome for family caregivers; they should be joyous occasions. After having a dialogue about visiting with family caregivers, nursing staff often experienced that family caregivers became more positive when they visited the nursing home.
Relating to Dying and Death in Dementia
Understanding and Consideration at the End of Life. Nursing staff believed family caregivers did not always understand death in dementia. For them, dementia was not a fatal illness compared to other terminal illnesses, according to nurses. One family caregiver explained to a nurse: “If you have cancer, death is a part of the disease, but yes, my mother is forgetful and puts her trousers on back-to-front, but that has nothing to do with death.” Family caregivers tried to understand the meaning of severe dementia illness, dying, and death. One nurse stated, “A cancer disease at least gives a touch of hope about recovery, but for family caregivers to persons with dementia, there is no alleviation.”
The cognitive disability of individuals with dementia precluded family caregivers from sharing their feelings around death with their loved ones. Family caregivers could not get answers from their relatives and had to cope with the end-of-life situation on their own. They struggled to understand the meaning of life for their relatives with dementia, as they could not discuss or exchange thoughts about how their ill family members experienced their situation. The illness had changed their personality and ability to share thoughts and feelings. In these situations, nurses tried to help family caregivers by showing consideration and providing security. Nurses supported family caregivers by expressing their understanding and providing knowledge about the illness and the meaning of death in dementia. Staff recognized that the inability to communicate with their ill family member could lead to family caregivers' feelings of loneliness and hopelessness.
Communicating About and Around Death or Not at All. Nurses' dialogues with family caregivers about death were rare until death was imminent. When staff engaged with and showed an interest in family caregivers, an opportunity arose to discuss family caregivers' reactions and feelings when their relative became weaker and death was imminent. Questions discussed often concerned practical things, for example, whether the individual with dementia should be sent to a hospital or stay at the nursing home to be provided end-of-life care. Conversations about death in general occurred when family caregivers' relatives became ill with a life-threatening condition, such as pneumonia, or when death was expected within a few days.
Family caregivers also talked about what clothes the dying individual should wear after death, instead of talking about death itself or the meaning of death now and in a near future, according to nurses. It was important to talk about death, but nurses thought it was difficult to integrate this discussion in their daily work. Some family caregivers were reserved and did not confide their thoughts about death with staff. They were withdrawn and did not seem to have a need to share their feelings. Nurses attributed this to the fact that they themselves did not always invite family caregivers to discuss dying and death because they believed it was a difficult and complex subject. Nurses did not have the training or strategies to talk about existential issues with family caregivers.
Nursing staff experienced that adult children seemed more unprepared for death than spouses, as one nurse stated: “Death is something that they don't talk about, or think about, no, it is a bit terrible, so when death is coming, they think: no not yet.” Adult children had always had their parents present in their lives, and staff perceived that adult children struggled to become accustomed to a life without their parents. Spouses seemed to be more prepared because they had taken care of their ill spouse for many years, they were older, and nearer to death themselves. It was not unusual for family caregivers to have their first encounter with death at the nursing home when their relative with dementia was dying.
Creating Conditions for Nearness in Encounters. Nurses reflected on how to approach family caregivers when they watched over the dying individual during the last days of life, with one nurse stating: “Then you have to find a balance…. How close should I be in this situation, should I hold back or sit down and talk?” Nurses often quickly perceived and respected when family caregivers wanted to be by themselves. Nurses also experienced that many family caregivers seemed very alone and sometimes lost in this difficult situation. Making decisions about how to create an encounter with family caregivers was based on nurses' feelings about the atmosphere in the patient's room, their empathic ability, and the relationship with the family caregiver. Being close in the encounters with family caregivers was about creating a relation, even if the nurse did not know the family caregiver, as one participant explained: “In dialogues, confirm and pay attention to the family caregiver, even if it was sometimes more important just to listen, to be present and available.”
Being close to family caregivers in end-of-life care meant that nursing staff also reflected on their own mortality. Some staff expressed that the fear of their own death could be a barrier when interacting with family caregivers, hindering them from being close and communicating about life and death. Nurses who had reflected on death in the past and felt secure in their own relationship with death described that they had the courage to be close and supportive to family caregivers in end-of-life situations.
Having a relative with dementia greatly affects family caregivers' life situations. The current study highlights how nursing staff in two nursing homes made efforts to facilitate family caregivers' existential life situations as much as possible by being their advocates, acting as supporters, and “being in between.” Nurses responded to family caregivers' various requests by doing and being. Different themes were developed based on what happened in the encounters.
The overarching theme, Nursing Staff “Being in Between” in Encounters With Family Caregivers to Ease Their Existential Life Situation, illustrates how nurses provide this support. The special relationships they developed with family caregivers led to in-person and authentic dialogues and interactions and represents the “between” according to Paterson and Zderad (1988). The overarching theme describes special encounters in which nurses could be supportive or a supporter. To be supportive is a possibility that occurs in relationships (Stoltz, Lindholm, Udén, & Willman., 2006). Being an advocate in the interactions with family caregivers meant providing psychosocial support, which is a form of “spiritual advocacy” (Rooke, 1994, p. 156). The concept of “patient advocacy” has been described (Kubsch, Sternard, Hovarter, & Matzke, 2004; Mallik, 1997), but “family caregiver advocacy” has not been described previously and needs to be further explored.
The themes Being an Advocate and Managing Feelings of Powerlessness refer to nurses' supportive actions (doing) in encounters with family caregivers, whereas the theme Relating to Dying and Death in Dementia refers to nurses keeping a distance and being present (being) when they were unsure of how to support family caregivers who struggled with the practical issues of death and not being able to talk about the meaning of death. The interrelated perspectives of being and doing have been described by Paterson and Zderad (1988). In their humanistic nursing theory, they describe the unique encounters in nursing care in contexts where cure is not possible but living with freedom and autonomy is possible (Paterson & Zderad, 1988). The theory is often referred to as a framework acknowledging the unique relationship between the nurse and patient but is also equally useful when exploring the unique relationship between the nurse and family caregivers to individuals with dementia living in nursing homes. According to Curtin (1979) being and doing are two parallel aspects of being supportive.
By “being in between” in encounters with family caregivers, nurses safeguarded family caregivers and protected them from feelings of shame and guilt (Høgsnes et al., 2014; Høgsnes et al., 2016). During in-person dialogues, nurses tried to comfort family caregivers, and nurses' intentions were to do good by responding to family caregivers' needs. Sometimes nurses avoided talking about sensitive issues that would upset or make family caregivers stressed or frustrated. At the same time, in the dialogues with family caregivers, nurses withheld information and did not always reveal what happened when family caregivers were not visiting the nursing home. Nurses filtered the information given and created a safe zone where family caregivers could feel free from burden. Nurses acted as a protective filter that safeguarded family caregivers, and at the same time, nurses were protected from being criticized by family caregivers.
Acting as an advocate in encounters with family caregivers meant taking charge and gave nurses an opportunity to open communication and invite family caregivers to be involved in the care of the individual with dementia. Nurses were family caregivers' spokespersons (Graneheim et al., 2014) and balanced the information by individualizing the content by providing continuous information about their ill relative's situation. Bramble et al. (2009) found that lack of information and communication may increase family caregivers' feelings of stress and worry, but if they are involved in the care of their relative, they feel respected. Family caregivers' feelings of isolation and burden might be a barrier to effective communication and may hinder them in being involved in the care of their relative. In the current study, nurses created a secure and safe zone where family caregivers could rest from worry and struggle.
Nursing staff understood that family caregivers needed support in managing their feelings of powerlessness in the situation (Høgsnes et al., 2014; Høgsnes et al., 2016). Nurses engaged themselves in spending quality time and being social with family caregivers. Graneheim et al. (2014) reported that family caregivers want to visit and spend time with their relative with dementia and the visits become a natural part of their daily lives. According to Westin, Öhrn, and Danielson (2009), relatives want to be involved as well as be paid attention to and not ignored by nurses. Nursing staff in the current study harbored family caregivers' various feelings (e.g., anger, frustration) and appeased them by providing high-quality care. The provision of high-quality care could contribute to making the visits stress-free and alleviating family caregivers' feelings of powerlessness and hopelessness.
Nurses were alert to family caregivers' signs of hopelessness when their relative with dementia was near death. According to Curtin (1979), to support family caregivers' existential life situations, finding meaning and purpose, both in living and dying, is an essential part of being a nurse advocate. Coping with dying and death was difficult for nurses and family caregivers. Some nurses had reflected on their own thoughts about death and had the courage to be close to family caregivers when their relative's death was imminent.
The strategy that family caregivers used when their relative with dementia was dying was talking around death (i.e., not talking about death itself or not talking at all). According to Beck, Törnquist, Broström, and Edberg (2012), the most appropriate time to talk to family caregivers about death is after the death of a resident, but staff do not always know how to provide structured support. Family caregivers in the current study talked about practical things and not about the meaning of death for themselves and their dying relative. Not talking about death could be due to family caregivers and the individual with dementia having never discussed issues about life and death earlier in their relationship and, as the disease progressed, the opportunity was lost. Communication is not always about verbal communication; sometimes there is no need to talk. Emotions are not always transmitted by words; simply being present may also convey feelings (Vassallo, 2001).
Strengths and Limitations
In the current study, trustworthiness was established throughout the entire research process (Lincoln & Guba, 1985). Credibility was achieved by obtaining rich descriptions from RNs and ANs and reviewing and discussing the analysis among all authors. A limitation may be that data were collected from nursing staff who spoke about family caregivers' existential life situations. A strength may be that data were collected about the phenomenon from individuals other than family caregivers (i.e., nurses) to obtain a more objective perspective. During the interviews, nurses reflected and verbalized their thoughts about family caregivers' existential life situations and their responsibility to encounter these issues. The strength of using an interpretative content analysis was that the method provided a structure of the phenomena studied. The research questions guided the process of analysis and data were interpreted, encouraging a pragmatic approach that may guide and be useful in the context of nursing homes. A challenge was to find the right level of interpretation (i.e., not too close or distant from the text).
Relevance to Clinical Practice
Clinical practice would be enhanced if nurses in nursing homes had appropriate education and training about existential issues to provide individualized and person-centered support to family caregivers. Education and training could develop their confidence in initiating conversations about existential issues with family caregivers. It is likely that nurses would feel confident that they were supporting family caregivers as much as possible and this would alleviate some family caregivers' existential stress and benefit their well-being. “Being in between” allows nurses to respond to family caregivers' unspoken and out-spoken existential needs, thereby increasing family caregivers' well-being.
Understanding nursing staff's supportive actions when encountering family caregivers to individuals with dementia as “being in between” opens a new perspective of how existential issues may be approached in nursing. “Being in between” describes the highly complex care nurses provide in nursing homes to older adults and when approaching family caregivers' existential life situation. Nurses entering the “being in between” may inform a deeper understanding of family caregivers' existential needs and ease family caregivers' existential burdens. By being an advocate for family caregivers, encountering their feelings of powerlessness, and being close and present when death is imminent, may play a significant role in nurses' ability to develop and apply their abilities of “being in between.” The meaning of “being in between” has not been described in the context of nursing homes and needs to be further explored as an important component of clini cal nursing care.
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