Dementia is a public healthcare priority, and its prevalence is increasing (Prince et al., 2013). Patients with symptoms such as anxiety, depression, delirium, or agitation often need special health care, which they rarely receive (Langballe & Evensen, 2011; Rokstad, 2005). About 80% of nursing home residents in Norway suffer from dementia, and most of these patients have behavioural and psychiatric symptoms (Selbæk, 2005; Wergeland, Høgset, Söderhamn, & Kirkevold, 2014). Further characteristics of these patients are polypharmacy and frailty, which might decrease the quality of their life and lead to dysfunction and even death (Rørvik & Laake, 1990; Wyller, 2015). Psychiatric healthcare services need to develop new ways to meet the needs of these patients and their caregivers (Helsedirektoratet, 2014; Olsen et al., 2016; Zarit, 2018).
The need for care is comprehensive and often involves relatives or staff in nursing homes (Departementenes servicesenter, 2011; Knapp, Comas-Herrera, Somani, & Banerjee, 2007; Lystrup, Lillesveen, Nygård, & Engedal, 2006; Olsen et al., 2016). People with challenging behaviour such as aggression can be demanding on caregivers (Engedal & Haugen, 2009; Mallon, Krska, & Gammie, 2018; Spreadbury & Kipps, 2017). Relatives caring for a family member with dementia perceive the task as a burden and report their own feelings of depression (Papastavrou et al., 2011). Nursing home staff who care for people with these behaviours are also more likely to experience stress (Jeon et al., 2012; Rognstad & Nåden, 2011). Therefore, it is recommended that relatives and nursing home staff should receive assistance and supervision from their district psychiatric centre (Lov om spesialisthelsetjenesten, 2001). These centres are a part of the specialised healthcare services in the Norwegian welfare model, which is characterised by public funding and service provision (Esping-Andersen, Gallie, Hemerijck, & Myles, 2002; Gammersvik, Torgunrud, & Sjøly, 2013; Helse- og omsorgsdepartementet, 2013).
There is a need for better cooperation among the levels of healthcare services (Helse- og omsorgsdepartementet, 2009) to allow them to give customised attention to the needs of patients and their relatives and to make such services innovative in how they serve and treat these patients (Gammersvik et al., 2013; Helse- og omsorgsdepartementet, 2009). However, the government does not provide any concrete guidelines for improving cooperation or sharing responsibilities among levels of healthcare services for this group of patients (Helse- og omsorgsdepartementet, 2009, 2016, 2017).
Older people are increasingly being referred to specialist healthcare services, and patients with psychiatric symptoms are being referred for treatment by psychogeriatric teams (Godager & Thorjussen, 2016; Helse- og omsorgsdepartementet, 2011; Hval, Kristiansen, & Lorentzen, 2012). In Norway, such referrals are particularly challenging because of the geographical distances involved. Several municipalities have fewer than 5,000 inhabitants but cover large areas. This tendency is in line with Koller et al. (2010) who found that rural patients were less likely to consult neurologists or psychiatrists. To improve access to these services, the Norwegian government and Medical Association have suggested ambulatory services for patients in their private home or nursing home (Helse- og omsorgsdepartementet, 2013; Norsk psykiatrisk forening, 2010).
Further research is needed to understand more about ambulatory psychiatric teams: how they work with specific treatments and how they follow up with patients (Gammersvik et al., 2013; Helsedirektoratet, 2014; Norsk psykiatrisk forening, 2010). Studies have shown that ambulatory teams can be useful in treating people with a mental disorder (Olsø, Almvik, & Norvoll, 2015; Ranheim, Flottorp, Austvoll-Dahlgren, & Johansen, 2010). International studies have documented how ambulatory teams are particularly helpful in rural districts with large geographical areas, and they can reach patients who cannot be treated by central clinics (Clancy, 2015; Valdes-Stauber, Putzhammer, & Kilian, 2014).
Further, research has shown that receiving healthcare services at home gives patients and their relatives a feeling of control and offers patients involvement in deciding their own treatment (Gibson, Timlin, Curran, & Wattis, 2007). Little is known about the best ways to organise healthcare services for treating people with dementia living at home (Helsedirektoratet, 2017) or for ambulatory teams (Ranheim et al., 2010). Support from psychogeriatric teams is needed and seems to have a positive influence on nursing home staff (Sellæg, 2005; Verbeek et al., 2018).
However, more studies are needed to describe and evaluate the use of ambulatory teams in nursing homes (Sellæg, 2005). For example, the staff of nursing homes have identified the need for more practical competence in dealing with aggression (Brenden, Storheil, Grov, & Ytrehus, 2011). There is also a lack of knowledge about how staff experience working in ambulatory teams. This might be because there are still few teams that offer such outreach activities, as shown in a recent study from the UK (Verbeek et al., 2018). In our region in Norway, there is only one team offering ambulatory service. To fill this knowledge gap, we studied how the ambulatory psychiatric team works in a rural part of Norway and how users and staff experience the services provided by this team.
The aim of this study was to explore and describe the relatives’, nursing home staff’s, and team members’ experiences of ambulatory psychiatric teams in treating older people with dementia and challenging behaviour.
Methods
This study had a qualitative descriptive design with the recommendations for qualitative research as described by Kvale and Brinkmann (2015) and was inspired by a phenomenological/hermeneutic framework.
Context
In the interviews, we collected data from professionals, relatives of patients, and staff in nursing homes about their experiences with ambulatory teams treating older persons with dementia and behavioural and psychiatric symptoms. The ambulatory team is a part of the district psychiatric centre, which is a governmental institution. The most common cases for the team are those that relatives or nursing staff find difficult to handle (e.g., those involving violence or particularly challenging behaviour). The patients are referred to the specialist team either from their general practitioner or from their nursing home when assistance with challenging behaviour is needed.
Participants
We recruited 14 informants. The head of the district psychiatric centre helped by contacting them. They were then invited to join the study. The informant composition included six relatives, two staff from an ambulatory team (psychiatrist, social worker/nursing aide), and six nurses/social workers from four nursing homes. In the results, the informants were given a number and accompanied by a relative, an ambulatory team member, or a nursing staff member.
A previously developed interview guide was used. The informants from the ambulatory team were asked to describe their practice (e.g., by describing a visit to a patient’s home or while facing a challenging situation in a nursing home). The relatives and nurses were similarly asked to describe their experiences in consultation with the ambulatory team as well as any cooperation among the various actors. Nursing staff members were asked to describe their experiences with patients with dementia and behavioural changes. Furthermore, they were asked about their supervisory experiences from the ambulatory team regarding these patients. We also encouraged the informants to talk freely about the topics and to relate their stories using their own words (Kvale & Brinkmann, 2015). At the same time, the interviewers encouraged exploration of interesting topics that arose during the interviews. Both staff and relatives were asked about the process that led them to seek professional assistance from the specialist health service. The interviews were recorded digitally and transcribed.
Analysis
The analyses were inspired by systematic text condensation as described by Malterud (2012). First, we read all of the transcribed texts to establish an overview of the data and to obtain a general impression of the whole. Second, the material was reviewed systematically to identify meaning units (Malterud, 2012). We marked each potential meaning unit and organised each interview to determine the final meaning units. Third, we reflected on the different meaning units that were identified by asking ourselves the following question: What is this really about? On this point, it was useful for us to spend time considering or reconsidering aspects of the text to uncover the essential meaning of the different meaning units. During this reflective process, we found it necessary to reread the original transcripts. Further, the meaning units were condensed across interviews and were systematically abstracted into subcategories and categories, as shown in Table 1. Fourth, the data were reconceptualised, and the pieces were put together again. We developed descriptions and stories to help answer the research question and to describe the informants’ experiences. An analytic text in which we aimed to stay close to the empirical data was created to elucidate the results (Malterud, 2012).
Ethical considerations
The Norwegian Social Science Data Services approved the study (project number 48127). Voluntary, informal written informed consent was obtained from all participants. The data was stored on the university’s fileserver, and during analysis, copies were kept on portable storage devices. The research process emphasised the principles of anonymity, protection from harm, and proper data storage (World Medical Association Declaration of Helsinki, 2008).
Results
Three categories emerged from the analyses: (1) tailor-made services, (2) staff need to be observed and direct feedback needs to be obtained, and (3) better cooperation.
1. Tailor-made services
The ambulatory team spends much time visiting patients in different municipalities at home or in a nursing home. When the team members visit a patient at home, they consult the patient and interview the relatives, if they are present. Informants who were relatives described important changes in the patient’s life over time and referred to recorded information about memory and activities of daily living. For example, the informants described changes in the patient’s participation in social life, anxiety, behaviour, or hygiene. Relatives are an important source of this information because they often help in coordinating the patient’s life and are frequently the main caregivers.
I think the ambulatory team is very important because if a patient is removed from his or her daily situation, the results often are different. This is because patients often present only their best side. So, the fact that there is an ambulatory team that gets to see the patient’s situation, [to] see how the patient lives, I believe, is important. (Informant 1, relative)
All informants agreed that the most important advantage of the ambulatory team is the opportunity to meet the patients in their home environment. Informants who were ambulatory team members noted the uniqueness of observing patients in their home environment, which is different from a hospital setting.
The informants (relatives) noted that the team obtains a fuller picture of the patient’s life situation by meeting the patient at home. The relatives also underlined the opportunity to talk to the psychiatrist on their own and highlighted the fact that the psychiatrist was available to them between visits in the home, which was very much appreciated. During such visits, the team tries to obtain an overview of how much help patients need and, because family members are not a homogeneous group, the types of support needed by relatives.
When visiting nursing homes, the team observes staff members not only as they communicate with patients but also as they provide supervision of difficult situations. Most often, the visit starts with a meeting with staff to gather information about the patient’s situation.
When we visit patients living in a nursing home, it’s quite a good idea to have a meeting with staff first. The staff can give us a lot of information. Our experience is that these meetings have a double function. First, we get a lot of information, and second, the staff members get to talk about the demanding situations. (Informant 2, ambulatory team member)
Many informants (staff members) attend these meetings, probably because they want to be heard and get an opportunity to describe their everyday situation. The informants described how they experience difficulties in their daily care of patients with challenging behaviours. For example, if patients are violent or resist personal care, then the team examines and diagnoses the patient. During this examination, team members might discover that the patient suffers from frontal-lobe dementia, which includes these typical behaviours. Furthermore, the team can supervise different communication techniques, such as Marte Meo (Alnes, 2015; Rokstad & Vatne, 2009). This methodology uses small video recordings of communication between staff members and patients to increase understanding of the patient. In some cases, the team might suggest that the patient needs compulsory interventions to ensure that he or she receives personal hygiene assistance attended to by the staff. The informants described how the team is flexible and how it tries to see each situation independently and suggest tailor-made services for individual patients.
We always try to tailor the services to the individual patient. (Informant 2, ambulatory team member)
The benefit of an ambulatory team is the opportunity to work closely with patients and their relatives, nursing home staff, and other caregivers, which aids in understanding the patient’s situation. The close relationship the team achieves by working in an ambulatory mode makes it possible to develop an individual, tailor-made service that implies a flexibility, accessibility, and availability for each patient and his or her family.
2. Staff members need to be observed and given direct feedback
When visiting the nursing home, the team fills out different forms to monitor and record the patient’s situation. These forms are usually completed during discussions with relatives or nursing home staff. In some situations, staff members complete these documents before the team’s visit (e.g., nursing home staff might record a patient’s agitation). Informants (staff members) understand the need for forms, but they prefer to receive feedback from direct observations during their care and communication with patients. Challenging situations are often difficult to handle when a patient is agitated or even aggressive. In some situations, informants had experienced attacks from their patients. One informant, for example, explained how she had been slammed into the wall. Most informants felt that more information could be obtained by observation of staff while communicating with patients.
Of course, all of these forms are very important, and they can provide a lot of information. But it’s often by observing daily work that you can discover what the real problem is. (Informant 3, nursing staff member)
The team often observes the patient in his or her private nursing home room. However, informants described how they felt that this manner of observation did not always provide a full impression of the patient. The informants preferred the team to observe them while working with residents in the common areas of the nursing home. This observational setting would provide the team with the opportunity to supervise the informants as they communicate with residents.
I had hoped that the team would observe the patient during the day and discover what we do wrong and what we do right, but there wasn’t any of that. (Informant 3, nursing staff member)
Direct supervision might help informants understand what a patient is trying to express when acting aggressively or exhibiting anxiety. Such insight might be particularly important when different informants handle these patients differently. The informants noted that supervision by others from outside the nursing home might be easier to receive.
… and receive feedback and correction on your actions. It’s easier to get that from someone on the outside. For example, more concrete supervision and advice are needed about patients who become agitated or aggressive or who attack the staff. (Informant 4, nursing staff member)
Informants (ambulatory team members) described their use of the Marte Meo method (Alnes, 2015; Rokstad & Vatne, 2009) when they supervised staff in nursing homes. In this type of supervision, small video recordings of communication are used to increase understanding of what the patient is trying to express. However, the method is demanding and requires increased resources from ambulatory team members.
Staff informants felt they received good feedback on their work from the ambulatory team during meetings (e.g., confirmation of the actions they had taken when dealing with different patients). Situations involving patient aggression can be experienced as frightening, and staff members want to be observed by the ambulatory team during daily care. In addition to observation, staff would like feedback on their actions.
3. Better cooperation
All informants (ambulatory members, relatives, and staff) agreed that better cooperation is required to improve service for this group of patients. There is a need for better understanding of nursing home staff experiences to improve communication among different levels in the healthcare services.
I believe that cooperation between the municipality and specialist health care is important. Cooperation between the municipality and specialist health care can be improved—for both psychiatric and other aspects of care. (Informant 5, nursing staff member)
Informants (relatives) explained that they need to be heard and seen. Relatives are an important part of the patient’s life, and they believed it to be important that 1) they contribute and 2) health services are aware of their resources as well as their limitations.
Because relatives are often a big part of the patient’s life, I need them [the health services] to understand the patient’s whole situation, who the relatives are and how they can contribute. Some [patients] have a large family, and several [family members] can contribute, but we are only two [in our family]. (Informant 6, relative)
The informants also discussed their need for support from the psychiatrist in the ambulatory team. As an example, for one patient needing to be placed in a residential care home, the family received support from the psychiatrist for only a few days before the patient was offered a place in the care home.
I believe that it [support] has a greater effect when it comes from the psychiatrist and not just from me nagging. I cannot say that I met resistance previously, but it’s more about how hard they try. (Informant 6, relative)
The informants (relatives) described obtaining an overview of the services available to their family member as challenging. They often needed to contact many health services, but it was difficult for them to identify which of the care workers were responsible for their relative’s care. The informants wanted a contact person and meeting points for information exchange. This experience was consistent with that of the informants from the ambulatory team, who felt that getting closer to patients by visiting them at home was important in obtaining cooperation from family members. The informants (ambulatory team) do not have the resources to follow up with patients or relatives over time. It is therefore important that the family’s general practitioner follow up. Informants described how they wished for a contact person in the municipality who could follow up on what they had planned during the consultations.
We received a question from one of the dementia teams in one of the municipalities. They wanted to meet us and we accepted, but then I thought, ‘Shouldn’t the dementia teams from all municipalities have met [with] us regularly?’ (Informant 1, ambulatory team member)
All informants agreed that better cooperation was needed. The relatives wanted healthcare services to see their family member’s entire situation. The ambulatory team members wanted more formal cooperation with the different dementia teams in the different municipalities that they serve. The questions that remain concern the roles that the teams fill and the different ways of following up on patients throughout the process. The team members suggested that a coordinator or contact person in the municipalities should have the main responsibility for further coordination of these patients’ healthcare services and for the decision about whether a patient should receive continued home care services.
Discussion
Our findings show that there are several benefits of ambulatory teams. Such a team has the opportunity to work closely with patients and their relatives, nursing home staff, and other caregivers. This close relationship facilitates the development of a tailor-made service for each patient, which gives the team the opportunity to be more accessible and flexible. Team members can offer individual services for each patient, which is important for the patient, relatives, and staff (Helse- og omsorgsdepartementet, 2009, 2016; Kitwood, 1999). The team members in this study visit patients with severe dementia or a psychiatric illness to diagnose, treat, and guide relatives or staff who are caring for these patients. The most common cases for the team are those relatives or nursing staff find difficult to handle (e.g., those involving violence or particularly challenging behaviour).
The benefits of working in a team to provide the best possible service for this vulnerable group have been suggested by previous researchers as well as the Norwegian government (Helse- og omsorgsdepartementet, 2009; Verbeek et al., 2018; Helse- og omsorgsdepartementet, 2017). However, there is little evidence or guidance for how these teams should be best organised. In Norway, older psychiatric patients seem to have low priority in governmental plans for future psychiatric health demand, and this apparent tendency has not been investigated thoroughly (Helse- og omsorgsdepartementet, 2016; Helsedirektoratet, 2017; Sellæg, 2005). Knowledge gathered from this study might be helpful in developing future primary care models (Spenceley, Sedgwick, & Keenan, 2014) such as ambulatory psychiatric services.
Meeting a patient at home makes it is easier to understand the everyday situation for both the patient himself or herself and his or her relatives. It also provides the opportunity to examine and develop a plan for each patient. Ranheim et al. (2010) also reported on patients treated at home. Our findings show that services like this that go to the patient rather than the other way around are especially important in the rural regions of Norway. That is because of the long distances to hospitals, which can be a challenge for these patients and their relatives. Similar findings have been reported in an Australian study (Clancy, 2015), which noted that outreach services have advantages for both patients and the outreach team. The clinicians obtain better insight into the patient’s situation and are perceived as being more available, which is in line with previous research (Clancy, 2015). This kind of positive approach can also help relatives cope with their caregiving role, as stated by Papastavrou et al. (2011). However, few teams still exist that offer outreach activities, as shown in a recent UK study (Verbeek et al., 2018). The team we have studied is unique in this region of Norway.
Staff members felt that they received constructive feedback on their work from the ambulatory team during meetings (e.g., by confirming the actions they had taken of behalf of various patients). However, the staff members wanted to be observed during daily care and to receive feedback on their actions, whether correct or incorrect. Similar findings—that staff want more practical training and competence—have been reported previously (e.g., when dealing with aggression) (Brenden et al., 2011; Mallon et al., 2018). Patients’ aggression can be frightening for staff and result in stress (Cohen-Mansfield & Libin, 2004; Mallon et al., 2018; Pulsford & Hadi, 2011). One study showed that staff experience less stress and a lower workload when an ambulatory team follows up on their patients (Hval et al., 2012). Unsuccessful relations with a patient can lead to staff feeling defeated or powerless (Testad, Aasland, & Aarsland, 2007). Supervision can help empower staff and make them aware of their own resources and challenges (Lai, 2004).
Team informants described how they used the Marte Meo method during supervision in nursing homes. This seems to be a good method for teaching about how to deal with challenging behaviour. It can help provide nursing home staff with advice for improving their communication with patients, which may help bolster their confidence in dealing with these demanding situations (Alnes, 2015; Rokstad & Vatne, 2009).
All informants agreed that better co-operation was needed. Nursing home staff informants felt that a need existed for better information sharing among different healthcare levels. The patient relatives wanted healthcare services to see their family member’s situation from every angle. The ambulatory team members wanted more formal cooperation with the dementia teams in the different municipalities they served. Despite the programme for cooperative reform in Norway in 2009 (Helse- og omsorgsdepartementet, 2009) and a white paper on future primary healthcare services (Helse- og omsorgsdepartementet, 2015), cooperation among healthcare levels does not seem to have improved. Neither is such cooperation included in the 2017 national guidelines for dealing with patients with dementia (Helsedirektoratet, 2017).
The services are fragmented, which is unfortunate for patients, especially the most vulnerable groups such as older persons with a psychiatric disorder (Helse- og omsorgsdepartementet, 2009, 2015). Similar findings were presented by Verbeek et al. (2018). Our informants suggested that to ensure continuity in the healthcare services, a coordinator in each municipality should be responsible for follow-up planning and coordination (Gjevjon, 2015; Melchisedekow & Starheim, 2014), as suggested in a national guideline for patients with complex needs (Helsedirektoratet, 2018). Western Norway is rural, and many patients live far away from healthcare services, leaving them vulnerable. Therefore, better cooperation among special, primary, and community healthcare services is essential for improving patient pathways (Helse- og omsorgsdepartementet, 2009, 2016).
An individual plan can be useful in ensuring better cooperation among various levels of healthcare services (Forskrift om rehabilitering, individuell plan og koordinator, 2012). Such cooperation is particularly important for those patients needing permanent, co-ordinated, and individualised care services according to Norwegian government rules and regulations. Despite these regulations, it putting individual plans into practice seems to be difficult, as shown by Kjellevold (2014). Others have suggested that the individual plan needs to be integrated into each patient’s use of healthcare services (Helse- og omsorgsdepartementet, 2015; Helsedirektoratet, 2018; Kjellevold, 2014). A need exists to clarify the municipalities’ responsibility for this group of patients (Helse- og omsorgsdepartementet, 2015; Kjellevold, 2014). More research is required to optimise municipal provision of services for persons with dementia and behavioural and psychiatric symptoms. A need also exists for more evidence-based knowledge on how to best care for patients with challenging behaviour to improve competence in nursing home and home care service staff. Improved competence in geriatric psychiatry will result in a higher quality of patient treatment.
Strengths and limitations
Several strategies were used to ensure trustworthiness and credibility in this analysis. The interviews were sent to the informants for fact checking (Malterud, 2012). The informants could approve the transcript and add any reflections they desired. After interviewing 14 participants with different perspectives on and experiences with the ambulatory team, we found that data saturation was reached (Malterud, 2012). Throughout the entire research process, we tried to maintain a reflective position as a research team. All authors listened individually to the interviews and made their own analytic notes, which were later discussed among the research team. We found it to be important to work together during the interpretation and contextualisation of the data (Malterud, 2012), which strengthens the validity of our findings. Furthermore, we discussed, questioned, and argued for our interpretations to the best of our ability.
Conclusion
Little is known about the best ways to organise healthcare services for older persons with dementia and psychiatric symptoms who are living at home or in a nursing home. Research has shown that relatives and nursing home staff experience the care of these patients as a burden and that they need support and supervision. Few psychogeriatric teams offer ambulatory services. The aim of this study was to describe experiences of an ambulatory psychiatric team treating older people with dementia and challenging behavioural traits such as agitation. This qualitative study included interviews with 14 informants who were composed of relatives, ambulatory team members, and nurses from nursing homes.
Ambulatory psychogeriatric teams are particularly helpful in rural districts.
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