Healthcare personnel’s experiences of enhancing social community for people living in dementia special care units

Abstract

Building trustworthy relationships that promote equal participation is a fundamental feature of daily living in dementia care. Creating a social community is thus a key component of quality of life for residents in dementia special care units. The aim of this study was to explore healthcare personnel’s experiences of enhancing social community in common spaces in dementia special care units. A qualitative descriptive design consisted of four focus-group interviews with 15 healthcare personnel. The transcribed interviews were analyzed inductively using qualitative content analysis. The findings revealed that healthcare personnel’s experiences of enhancing social community in common spaces were related to three main themes, expressed as dilemmas between knowing versus not knowing each other, safety versus unsafety and presence versus absence. Our analysis indicates that to enhance social community, it is essential for healthcare personnel to be able to create different forms of proximity to residents: physical, narrative and moral. Moreover, the meaning and role of ‘proximity’ in dementia care should be further explored as organizational context influences spatial-structural practices and may disrupt proximity in dementia care.

Keywords

dementia special care unit dilemmas moral proximity narrative proximity social community

Introduction

Building trustworthy relationships that promote equal participation is a fundamental feature of daily living in dementia care. As the disease progresses, many people with dementia experience increased social isolation and may require long-term care to feel safe, experience togetherness and derive a sense of belonging to others.¹ In dementia special care units (DSCU), facilitating the formation of a community that promotes positive social interaction is a key component of residents’ quality of life.^1,2 Over time, people with dementia gradually lose their social skills, and it becomes difficult for them to express themselves, enjoy conversations and/or comprehend their present circumstances. Nevertheless, being in the company of others is essential, because human connectivity may help repair the social rupture that accompanies dementia.³ In that relationships are related to quality of life in dementia care,^1,3–5 it is necessary to understand the significance of the relational components of the social community formed during care. It is therefore important to recognize the contributions that both healthcare personnel (HCP) and residents make toward forming relationships and, thereby, a social community.⁶

It is not possible to separate the relationships between HCP and dementia residents and the social community from the DSCU setting (place) itself.^7–10 A nursing home is not merely a physical location; it is also a place that holds meaning and attachments for people.^11–13 Brown Wilson describes a social community as a place where meaningful reciprocal relationships are formed and company is enjoyed.¹⁴ However, in institutionalized dementia care settings, the creation of a social community can be difficult.¹⁵ As disorientation and uncertainty regarding places and/or expectations connected to places are part of the disease, ‘sense of place’ is an important social element in dementia care.¹⁶ In addition, the cognitive-communicative problems associated with dementia further complicate everyday interpersonal interactions; residents must adapt to living in a community, which entails unfamiliar people and new settings.¹⁷ The formation of a social community is even affected by various ethical aspects, including that dementia can affect people’s ability to exercise choice.^18,19

If we take into account the social and cognitive vulnerability of DSCU residents, it is essential that good HCP–resident relationships and concern for each particular resident constitute the focus of care in everyday practice. Quality in dementia care is consequently contingent upon HCP’s proximity in place and space. Malone maintains that proximity with patients is the core of care practice that is fundamentally based on interpersonal relationships.²⁰ There are three types of proximity, which are ‘nested’: physical, narrative and moral. In DSCU, physical proximity is achieved through nearness when HCP engage in bodily contact with patients during care. Narrative proximity is achieved when HCP come to know a patient by hearing and trying to understand the patient’s story. Moral proximity evolves from the development of physical and narrative proximity and emerges when HCP understand and have knowledge of what each unique patient needs and act on each patient’s behalf.²⁰

Social community in DCU is associated interaction within place (setting) as a site of healthcare delivery. Architectural considerations of common places in the design of DSCU can facilitate social interaction and thereby enhance social community.^21,22 Although the physical setting of DSCU can play an influential role in enhancing social community, it is necessary to understand the significance of the relational components of the social community formed during care. Researchers have highlighted the great complexity inherent in studying the relationships and social communities that people with dementia experience.^{14,15,18,19,23,24} However, previous research in nursing homes does not provide useful argumentation of how HCP actively deal with the social situations they encounter as part of their work.²⁵ As the enhancing of social community has not been investigated to the extent desired, additional research is needed to understand how sustaining relationships between HCP and residents can enhance social community in common spaces in DSCU.

Aim

The aim of this study was to explore HCP’s experiences of sustaining relationships and enhancing social community in common spaces in DSCU.

Method

Setting, participants and data collection

This present study has a qualitative descriptive design and its focus on social community derives from a research project concerning psychosocial care in DSCU conducted in a long-term care institution outside a city center in southeast Norway during autumn 2008.²⁶ The physical environment of the institution was designed specifically for people with dementia, and the institution sought to ensure specialized expertise in caring for dementia patients through competence-raising measures for its HCP over the course of several years. The institution had two sections that together provided long-term care to 28 residents.

In this present study, a focus-group method of data collection was used. The data consisted of four focus-group interviews with 15 HCP. Participants were recruited via the managers of the institution, and inclusion criteria included direct, physical contact with residents and interest in discussing HCP–resident relationships. The participants, all women with 3–30 years of work experience, were divided into two groups consisting of six and nine participants. The interviews lasted two hours, were carried out at the workplace and were tape-recorded and transcribed verbatim. Each group was interviewed twice as multistage focus-group interviews are characterized by a depth exploration of the same subject in more than one meeting, as proposed by Hummelvoll.²⁷ The interviews were based on a thematically organized interview guide. The study themes were related to how HCP described their relationships with residents, how the institution’s organization of care supported the formation of relationships and how HCP realized the sustaining of relationships and the enhancing of social community. During all interviews, two moderators were present. The lead moderator led the interview and ensured that participants’ experiences were elicited. The assistant moderator recorded observations and contributed to clarification when the lead moderator’s follow-up questions were unclear. Focus-groups interviews were chosen since data collection is improved when participants share similar experiences.²⁸

Data analysis

The transcribed focus-group interviews were analyzed inductively using qualitative content analysis inspired by Graneheim and Lundman.²⁹ The data were analyzed in two steps. First, a so-called manifest content analysis was done, that is, the text that was obvious and manifest was analyzed and described. Second, a latent content analysis was made, thus, expressions were identified as underlying themes. The analysis began with the three authors reading the text repeatedly, with purpose of gaining an overall impression of the text, and meaningful units in the text were identified. These meaning units were condensed into codes in a table for each interview. The text was then analyzed for similarities and differences, which were compared to each other and then collected in groups and sorted into subcategories and categories (Table 1). Presenting a systematic process of interpretation in this way is a means of increasing credibility and trustworthiness in the analyses.²⁹ Disagreements in the analysis among the authors were discussed in a critical dialogue until consensus was achieved.²⁹ The content analysis resulted in three themes related to the informants’ experiences with enhancing social community for persons in dementia special care units.

Table 1.

Examples from the data-analysis process.

Transcription from data	Meaning units	Codes	Categories	Themes
‘… At our place, you will always have people around you. You do not have to be afraid. They look after you and see that you are well …’.	The staff wanted to be visible to residents.	Be present together with the residents.	Physical presence	Presence versus absence
‘When she is not stimulated, she tears paper into pieces. She does not otherwise do this’.	The residents need confirmation that they are not alone.	Confirmation is to be both physical and mentally present.	Emotional presence
‘I feel that many are good at giving residents attention and if it is busy, then we must share a little bit. They require attention’.	Attention is important and demands sharing time with the residents.	Sharing time demands physical and mental/emotional presence.	Physical and emotional presence
‘It [lack of sufficient staffing, a lack of time and insufficient economic resources] must affect such things like the residents’ social needs if personnel must manage the other tasks that are imposed [on them]’.	The staff must reject residents on hectic days and they found it difficult to provide the best care possible for residents in common spaces, especially in regard to those residents who required more care.	The staff do not have enough time to be with the residents.	Physical and emotional absence

Ethical considerations

The study was submitted to the Regional Committee for Medical and Health Research, South East, for consideration (reference no. 6.2008.1212). Informants received written and oral information about the background and the purpose of the study. Informants were also informed via a written document as well as verbally that participation was voluntary and that they could at any time withdraw from the study without giving a reason and without consequences for the participants.³⁰ All informants gave written consent to participate in the study.

Findings

HCP’s experiences of enhancing social community in common spaces were related to three main themes, expressed as dilemmas between knowing versus not knowing each other, safety versus unsafety and presence versus absence.

Knowing versus not knowing each other

Knowing each other was a process of sustaining relationships with the residents in common spaces. According to the participants, it was important that HCP and residents knew each other and that communication between HCP, residents and residents’ families promoted continuity and familiarity. Given that residents’ language and understanding gradually deteriorated as the dementia disease progressed, it was important for HCP to maintain a continuous relationship with each individual resident in order to observe and understand each resident’s personal needs at any time. When the HCP knew the residents well, they were able to understand the residents’ nonverbal expressions: ‘[the residents’] facial expressions can certainly also say quite a lot then … expression … We know each other so well that we can interpret it in many other nonverbal ways: we can, to be sure, do that, all the time’. Such familiarity resulted in HCP’s sensitivity to residents’ needs and wants, which was also important for residents’ dignity: ‘I think it has to do with their dignity, that you meet them. Like with Gerd … it will save the day’.

It was also important for HCP to know the residents’ personal histories and be familiar with their preferences and social and family circumstances. Such information was gathered and retained in a separate document, thereby supporting HCP in offering individualized care:

You have to know a little of the pre-history, who they were before. Yes, because we only see the shadow of a life, don’t we? We have to really think about that: who they really are, who we are relating to … reading the case history file, keeping oneself updated, talking with each other. The case history file is also something that remains lying in the drawer.

The participants mentioned that residents became anxious and insecure in common spaces when unfamiliar HCP worked on the unit. One participant expressed residents’ anxiety thus: ‘This summer there was one who said, “Familiar people are coming, familiar people?” … Because then there were temps. The resident understood that we were going to leave also – that others would come then’. In the HCP–resident relationship, being familiar with each other was also significant with regard to reciprocity. The participants stated that the residents were concerned about the HCP and that the HCP in turn felt that they were important to the residents. For the participants, knowing that they (as HCP) were relevant to the everyday lives of the residents was a motivating and feel-good factor in daily work: ‘You see that they light up also – and is it you who is coming, like, a familiar person’.

The participants noted that the continuous exchange of oral information between HCP about residents was equally important with regard to sustaining relationships and enhancing social community. Such exchanges primarily occurred through daily oral reports between the HCP about the residents’ daily conditions. These narratives contained important knowledge and helped the HCP get to know the residents and become familiar with them. ‘We start in room 1 and go through each patient nice and quietly and say what we have done today: how he/she has [been]. It does not take long and it is very valuable. This results in more continuity’.

Still, the participants mentioned that the institution’s management asked the HCP to cease relaying information in oral form and instead to submit written reports, which was presented as a timesaving measure. A tension existed between the written information that was required and found in the standard electronic documentation and the oral information passed between the HCP. According to the participants, the written reports required the use of a more structured language, while the oral reports favored by HCP contained useful information considered impossible to convey in writing. The HCP’s use of oral narrative helped create continuity in HCP–resident relationships, thereby contributing to sustaining relationships and enhancing social community. Moreover, the participants related that they were uncertain what they should include in a written report:

We have been told that we should not write ‘Today her daughter visited her’. But this can be quite important for something can have happened when the daughter was there or else something else with them. It is also such things that you convey orally.

Safety versus unsafety

According to the participants, HCP’s ability to maintain security and provide consolation for residents were two of the main factors in sustaining relationships and enhancing social community. Due to residents’ deteriorating memories, it was important that the HCP frequently reminded residents about their situation:

Here it is safe and good. Here you always have people around you. Even at night, you do not need to be afraid because we have a night security guard who makes [his] rounds and looks in on you and checks that you are doing well. If you need help, there is always someone here.

The participants also considered security and consolation to be essential for generating ‘good moments’ with the residents, where the residents rested, relaxed and bonded with other people. Predictability was created, confidence was restored and comfort was provided when HCP (re)assured residents that they were important and would be remembered during the day, even if this was only a single act in a single moment: ‘the residents say to me “do not forget me” … “we will never forget you”, I say. The resident has forgotten it the day after, but then, in the moment, she is safe’.

The HCP even organized group activities for residents, such as sing-alongs. In general, such activities stimulated social community and provided residents with moments of good experiences. Nonetheless, spending time with others in common rooms could also lead to insecurity and a sense of unease afterwards for residents:

They think it is fun to come and [join in] whether it is singing or what it is, but they are awfully tired afterwards and then they easily become confused and uneasy later. I am a little doubtful; it creates a good moment when you take them up with you; they have a good time, but then they become uneasy toward the evening. What is best? What is good for them?

The participants stated that they (as HCP) interpreted residents’ behavior in relation to their professional knowledge of the dementia disease. For example, if residents showed signs of confusion, this confusion was interpreted as stemming from the dementia disease. Subsequently, the HCP took special care and protected residents from unnecessary impressions. However, despite believing that the disease caused residents’ behavior, the HCP considered each resident to be a unique person. The perceived uniqueness of each individual posed specific challenges for the HCP in terms of how to safeguard each resident’s individual security in common spaces.

There are so many impressions, you know; so much going on. There is so much talking and then we have others who [walk around], don’t they, and then we have someone who is sitting and singing and then it is … Some sing a lot and … not everyone likes it either.

Presence versus absence

The participants related that residents’ sense of security in common spaces was related to the presence of HCP, including the spatial and temporal dimensions of presence. According to the participants, it was during daily routines, such as the provision of personal hygiene, that HCP had the best opportunities to engage residents in one-on-one conversations and establish an emotional connection in the HCP–resident relationship, via dialogue and narratives. The HCP and residents came to know one other through bodily contact, when the HCP attended to the residents’ personal hygiene and so on. In a private room, the residents could be open for meaningful interaction: face-to-face and alone with a familiar HCP.

But caring for [someone] is a lot. It is not only washing. It is social initiatives. Some receive care and socialization at the same time. Then care takes longer, doesn’t it?

The participants reported that residents’ physical and cognitive impairments and need for individual care in private rooms prevented HCP from being bodily present in common spaces. They noted that when they (as HCP) were otherwise engaged in private spaces, their absence made them ‘invisible’ to some residents. They emphasized that the bodily presence of HCP is important in regard to preventing residents’ agitation or unease in common spaces: ‘[We have to] be there to help … help both then, so that it does not become a conflict’.

Health care personnel’s presence allowed them to swiftly alleviate residents’ unease when needed. The participants also described how the presence of HCP in the kitchen or dining room enabled observations of the residents’ various non-verbal expressions and helped the HCP meet residents’ needs.

They can show a lot with facial expressions and looks, so we can perhaps understand what they are looking for. They light up when they see others or ‘is no one here?’. If they cannot find the words they can stretch out a hand and want you. Those who can, just walk away: get up and walk away.

According to the participants, that HCP did not have limitless time to spend with residents could constitute a major obstacle. Administrative duties, for example, prevented HCP from being visible to residents at times, and the absence of HCP could contribute to residents’ unease and insecurity.

We do not sit so much because we do not have time for it and because we object to this a little. We do not want to spend so much time on the new PC in the nurses’ station ourselves, although we know that we must and should.

The HCP sought to form a social community and engage in communion with the residents during meals. For example, the participants related that a common breakfast where all residents and HCP were present was desired. Nevertheless, since the HCP were either busy with administrative duties and/or residents in private rooms, a common breakfast experience was not possible. Such an organization of care led to what participants called ‘flexi breakfast’, which was criticized for disturbing HCP’s communion with residents.

We know that they should preferably not have flexi breakfast. They should gather in peace and quiet during mealtimes, but then the time can be almost 11 before breakfast is on the table. There is so much else that we must do before we sit down to breakfast.

The HCP were aware that they could not always meet the residents’ psychosocial needs. The participants noted that on busy days, if residents’ apathy or undesirable behavior was to be avoided, the residents needed more stimulation from HCP.

And it happens that we must ignore them for we should something else or must something else. This occurs all too often. It occurs daily. When she is not stimulated, she tears paper into pieces. She does not otherwise do this … under where she has been sitting there are small pieces of napkin, toilet paper and everything. This does not occur if we speak to her.

The participants related that a good atmosphere and enhanced social community was created when HCP displayed good moods and calm demeanors: ‘It is important that those who come to work come with a little good humor. Doesn’t help that you have competence if you show … do not think it is ok to be here. For they see that. They do’. The HCP were aware that the residents needed attention and that to provide such the presence of HCP in common spaces was required: ‘I feel that many are good at giving residents attention. And if it is busy, then we must share a little bit. They require attention’.

Still, the participants noted that the residents were not always given adequate attention, due to insufficient staffing, a lack of time and insufficient economic resources. Even though it was understood that meeting residents’ psychosocial needs was directly related to residents’ well-being, the HCP found it difficult to provide the best care possible for residents in common spaces, especially in regard to those residents who required more care: ‘It must affect such things like the residents’ social needs if personnel must manage the other tasks that are imposed [on them]’.

Discussion

As seen in the findings, HCP’s experiences of enhancing social community in common spaces were expressed as dilemmas. In their efforts to enhance social community, the HCP tried to cope with the dilemmas in line with Malone’s proposal that sustaining relationships in DSCU involves the realization of the different forms of proximity with residents: physical, narrative and moral.²⁰ Moreover, the findings suggest that HCP’s experiences of enhancing social community in common spaces were related to being bodily present and the possibilities for learning about the residents through their stories and through oral reports between the HCP and to act on the residents’ behalf. The bodily presence of HCP personalized the care being provided, because the HCP and the residents came to know each other and the HCP imbued residents with a sense of security and safeguarded their participation in the community. Due to imposed administrative workloads and a lack of resources, the HCP were required to perform multiple tasks, in addition to caring for residents. This gave rise to dilemmas: knowing versus not knowing each other, safety versus unsafety and the presence versus the absence of HCP – which are in essence ethical questions.

The participants experienced that, because of residents’ spatial disorientation, a need existed to create a proximal space with residents. Increasing disorientation in place and time can lead to disruptions in people’s perceptions of the meaning of a place and, consequently, DSCU can constitute an emotionally challenging place for residents. Such disorientation may cause difficulties with what Örulv describes as ‘placing the place, and placing oneself within it’.^16(p.22) Health care personnel’s bodily presence or absence in relation to residents in common areas affected the HCP–resident relationship. The participants experienced that the proximal space included both bodily presence (being there) and availability (being there for). Our findings can also be linked to the findings of Edvardsson, Sandman and Rasmussen, who found that ‘staff presence or absence’ were the most likely social aspects affecting the variations seen in the psychosocial climate and well-being of patients at a dementia unit.²⁴ In our study, the absence of HCP led to unease among residents while their presence resulted in a good atmosphere and enhanced social community. Bodily presence allowed the HCP to ‘watch over’ residents and ‘know what’s going on’, providing them in turn with opportunities to intervene if misunderstandings arose between the residents and, consequently, safeguard the residents and community from negative events.

The findings from this study showed that the practical realization of enhancing social community is not only dependent on HCP’s physical proximity but also on narrative proximity, i.e. detailed knowledge of the residents’ individualized narratives, which enables the HCP moral proximity. Relational continuity helped the HCP get to know residents, and the participants related that HCP sought to organize their care work so that they and the residents could become close to one another, not only in place and space but also over time. ‘Knowing the person’ is, according to Malone,²⁰ related to narrative and moral proximity, through which in-depth knowledge of the patient is created and supports HCP’s personal understanding of the residents as a person. In this study, the HCP had the opportunity to be attentive to residents because they knew the residents. The HCP’s familiarity with residents’ histories and preferences was essential for understanding the meaning behind what residents said, and therefore essential to enhancing social community.

We conclude that the HCP’s physical and narrative proximity enhanced social community in common spaces. Malone maintains that a relationship exists between physical, narrative and moral proximity, all of which are interconnected: where physical proximity (presence) and narrative proximity (the sharing of information and narratives) are preconditions for the collective responsibility for patients, i.e. acting and looking out for patients’ interests (moral proximity).²⁰ As seen in our study, the HCP were able to see what was happening to and between residents and offered professional support by observing residents and providing a sense of security. When forming a community in DSCU, it is important that residents are offered opportunities to participate in the community.¹⁹ Our findings showed that the bodily presence of HCP was significant in regard to residents’ sense of security and also ensured that residents had the opportunity to participate in the community, which can be compared to findings by Helgesen, Larsson and Athlin,³¹ who found that the presence of HCP was fundamental to patient participation. Thus, proximity in all its forms is essential if DSCU residents are to become involved in their own daily care.

Shared information and shared knowledge are two fundamental elements of participation in the care relationship.^32,33 The study participants described how the DSCU residents, who could not verbally express their needs and wants, shared knowledge and information by expressing themselves through actions. These intentional actions took the form of unique gestures, facial expressions and manners, and thereby demonstrated an evaluative, interpretive manner through which to share knowledge. The residents depended on the bodily presence of HCP in the same space, which enabled the HCP to interpret their movements as being purposeful and meaningful. Bodily presence enabled the HCP to acknowledge the needs and wishes of residents that might otherwise have been undetected, consequently enabling residents to actively contribute to and participate in the care relationship.

However, enhancing social community in common spaces in DSCU was challenging. When physical or narrative proximity was limited, the HCP’s moral proximity was also limited. When such a situation occurred, the HCP were unable to enhance social community. Malone suggested that for moral proximity to endure, it is necessary for HCP to establish a physical nearness to a patient’s body and understanding of the patient’s narrative, if they are to engage with each patient in his/her particularity.²⁰ The participants were conscious of the collective responsibility they had as HCP to meet residents’ needs, and were critical of care routines that limited their physical or narrative proximity. The institution’s administrative procedures and practices resulted in the absence of HCP in common spaces and limited both their physical and narrative proximity, thereby hindering them in their positions as, ‘hearers and bearers of the residents’ story’.^20(p.2321)

Narrative proximity, in the form of a continuous exchange of verbal information on the state or condition of residents, is important when enhancing social community. Narrative proximity occurs when HCP come to know residents, for example by hearing unique stories from residents or residents’ families, or when knowledge about residents is transmitted, in narrative form, to other HCP. The participants in this study related that information was primarily conveyed through oral reports, which provided the HCP with an opportunity for professional communication, including consultation and discussion, and promoted continuity of care. Still, structural changes limited the HCP’s actions. The HCP were required to submit ‘silent reports’ and standard electronic documentation as a timesaving measure instituted by the institution’s management. The participants noted that this not only limited their narrative proximity but also their physical proximity, in that the computers, etc. necessary for the written reports were located separately and away from residents’ common spaces.

According to the participants, the HCP knew what was best for residents but, because of a lack of time or resources, were nonetheless at times required to prioritize or compromise their actions. With many residents to care for, they prioritized building a community in common areas and not ‘one-on-one relationships’ in private rooms. Gathering the residents in common areas provided all residents with the confirmation that they were not alone and that an opportunity existed to participate in their own care. It also allowed the HCP to form a comprehensive view of all residents, which in turn led to an understanding of the residents’ behavior and created possibilities for the HCP to intervene if they saw that residents needed help. By gathering residents together in common spaces, the HCP ensured equal access for all residents to participate in the social community. Still, the HCP’s prioritization of spending time in common spaces – often due to limited resources – was a compromise and limited their abilities to engage in one-on-one relationships. Physically touching and caring for residents in private rooms provided the best conditions for HCP to realize human closeness and emotional connections. Bodily presence created the possibility for private dialogues with residents and, through understanding the residents as unique person, the psychosocial needs of the residents were met. Still, in this study, inadequate staffing limited the ability of HCP to spend time in private rooms, and the HCP organized their work so that physical, narrative and moral proximity was realized in common spaces. However, Brown Wilson found that, in an enriched environment, all relationships must be taken into consideration because they may enhance a care culture and social community.¹⁴

Methodological considerations

Certain aspects need to be reflected on when addressing trustworthiness in qualitative research designs.²⁹ To strengthen dependability, credibility and transferability, all four focus-group interviews were conducted within four months since repeated data collections show the stability of the data over time and across situations and it was possible to follow the process of analysis. Dependability was strengthened by a critical dialogue among the authors until consensus was achieved. Transferability is also supported by a relevant description of the context and the selections of informants. Since it is known that a hierarchy within a group may affect data,³⁴ none of the HCP leaders were included in the focus groups. All of the participants were female and this reflects the clinical situation that dementia care in institutions is a female-dominated occupation. Hence, the sample is representative of the professional care providers’ structure of care for persons with dementia. However, different levels of competence among the HCP in the groups may have inhibited the openness of some participants. The participants were colleagues and knew each other which could also limit the nature and amount of data obtained in the study. Still, the selection criteria and research purpose ensured that the reality of the DSCU care environment was reflected. The focus-group discussions provided time for the HCP to reflect on their work and stimulated interaction and encouraged dialogue.

Conclusion

The nature of the cognitive and functional impairments associated with dementia makes it difficult for people with dementia to meet their own needs and, as such, DSCU residents are dependent on others to fulfill their needs. The physical, narrative and moral proximity of HCP are of especial relevance, because the disorientation associated with the dementia disease involves both existential and social dimensions. In this study, mandated structural changes affected HCP’s physical, narrative and moral proximity, limiting them in enhancing social community. The formation of a social community is dependent on the physical, narrative and moral proximity of HCP, and as such, these should not be limited, even if for administrative or economic reasons. Consequently, to gain a more comprehensive understanding of what HCP actually contribute to the care provided in DSCU, the concept of ‘proximity’ in dementia care should be further explored.

Footnotes

Funding

This research received no specific grant from any agency in the public, commercial, or not-for-profit sectors.

Conflict of interest

The authors declare that there is no conflict of interest.

References

O’Rourke

Duggleby

Fraser

et al.

Factors that affect quality of life from the perspective of people with dementia: a metasynthesis. J Am Geriatr Soc 2015; 63(1): 24–38.

Cadieux

Garcia

Patrick

. Needs of people with dementia in long-term care: a systematic review. Am J Alzheimers Dis Other Demen 2013; 28: 723–733.

Garcia

Hébert

Kozak

et al.

Perceptions of family and staff on the role of the environment in long-term care homes for people with dementia. Int Psychogeriatr 2012; 24(5): 753–765.

Brown Wilson

Davies

Nolan

. Developing personal relationships in care homes: realizing the contributions of staff, residents and family members. Aging Soc 2009; 29: 1041–1063.

Bradshaw

Playford

Riazi

. Living well in care homes: a systematic review of qualitative studies. Age Ageing 2012; 41: 429–440.

Davies S and Brown-Wilson C. Creating community within care homes. In: National Care Homes Research and Development Forum. ‘My home life’. Quality of life in care homes: a review of the literature. London: Help the Aged, pp.66–84. http://www.ageuk.org.uk/documents/en-gb/for-professionals/research/my%20home%20life%20quality%20of%20life%20in%20care%20homes%20literature%20review%20(2007)_pro.pdf?dtrk=true (2007, accessed 6 February 2017).

Liaschenko

. Ethics and the geography of the nurse–patient relationship: spatial vulnerable and gendered space. Sch Inq Nurs Pract 1997; 11: 45–59.

Andrews

. Towards a more place-sensitive nursing research: an investigation to medical and health geography. Nurs Inq 2002; 9(4): 221–238.

Peter

Macfarlane

O’Brien-Pallas

. Analysis of the moral habitability of the nursing work environment. J Adv Nurs 2004; 47: 356–364.

10.

Jonas-Simpson

. The experience of being listened to: a human becoming study with music. Nurs Sci Q 2003; 16(3): 232–238.

11.

Gesler

. Therapeutic landscapes: medical issues in light of the new cultural geography. Soc Sci Med 1992; 34: 735–746.

12.

Peter

. The history of nursing in the home: revealing the significance of place in the expression of moral agency. Nurs Inq 2002; 9: 65–72.

13.

Wiles

. Conceptualizing place in the care of older people: the contributions of geographical gerontology. Int J Older People Nurs 2005; 14(8b): 100–108.

14.

Brown Wilson

. Developing community in care homes through a relationship-centered approach. Health Soc Care Community 2009; 17: 177–186.

15.

Mclean

. From commodity to community in nursing homes: an impossibility? Ageing Soc 2006; 26: 925–937.

16.

Örulv

. Placing the place, and placing oneself within it: (dis)orientation and (dis)continuity in dementia. Dementia 2010; 9(1): 21–44.

17.

Clare

Rowlands

Bruce

et al.

The experience of living with dementia in residential care: an interpretative phenomenological analysis. Gerontologist 2008; 48(6): 711–720.

18.

Moore

. Dissonance in the dining room: a study of social interaction in a special care unit. Qual Health Res 1999; 9(1): 133–155.

19.

McAllister

Silverman

. Community formation and community roles among persons with Alzheimer’s disease: a comparative study of experiences in a residential Alzheimer’s facility and a traditional nursing home. Qual Health Res 1999; 9: 65–855.

20.

Malone

. Distal nursing. Soc Sci Med 2003; 56: 2317–2326.

21.

Lee

Chaudhury

Hung

. Effects of physical environment on health and behaviors of residents with dementia in long-term care facilities: a longitudinal study. Res Gerontol Nurs 2016; 9(2): 81–91.

22.

Lee

Chaudhury

Hung

. Exploring staff perceptions on the role of physical environment in dementia care setting. Dementia 2016; 15(4): 743–755.

23.

Ball

Lepore

Perkins

et al.

‘They are the reason I come to work’: the meaning of resident–staff relationships in assisted living. J Aging Stud 2009; 23: 37–47.

24.

Edvardsson

Sandman

Rasmussen

. Forecasting the ward climate: a study from a dementia care unit. J Clin Nurs 2012; 21: 1136–1144.

25.

Fjær

Vabø

. Shaping social situations: a hidden aspect of care work in nursing homes. J Aging Stud 2013; 27(4): 419–427.

26.

Aasgaard HS, Ytrehus S and Landmark B. Hvordan kan bolig– og tjenestetilbud tilrettelegges for å ivareta sosiale behov til personer med demens? En evalueringsstudie av skjermet enhet [How can housing and care services be organized to take care of the social needs of people with dementia? An evaluation study of a dementia care unit] [Report]. Drammen: Buskerud College, 2010.

27.

Hummelvoll

. The multistage focus group interview. Nor J Nurs Res 2008; 10(1): 3–14.

28.

Morgan

. The focus group guidebook, Thousand Oaks, CA: Sage, 1998.

29.

Graneheim

Lundman

. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today 2004; 24: 105–112.

30.

Declaration of Helsinki. WMA declaration of Helsinki: ethical principles for medical research involving human subjects, 64th WMA General Assembly, Fortaleza, Brazil, October 2013. http://www.wma.net/en/30publications/10policies/b3/ (accessed 6 February 2017).

31.

Helgesen

Larsson

Athlin

. ‘Patient participation’ in everyday activities in special care units for persons with dementia in Norwegian nursing homes. Int J Older People Nurs 2010; 5: 169–178.

32.

Cahill

. Patient participation: a concept analysis. J Adv Nurs 1996; 24(3): 561–571.

33.

Sahlsten

MJM

Larsson

Sjöström

et al.

An analysis of the concept of patient participation. Nurs Forum 2008; 43: 2–11.

34.

Kitzinger

. Qualitative research: introducing focus groups. BMJ 1995; 311: 299–302.