Specialist nursing case management support for carers of people with dementia: A qualitative study comparing experiences of carers with and without Admiral Nursing

Carers of people with dementia can experience reduced health and well- being, but little is known about how best to support them. There is some evidence to suggest that case management may improve outcomes for carers but less evidence about the features of case management services that can effectively support carers of people with dementia. Admiral Nursing operates a case management approach staffed by specialist nurses and is the only service of its kind in the United Kingdom dedicated to helping people with dementia and their carers. This paper reports qualitative findings from a mixed methods study of Admiral Nursing. For the qualitative strand of the project, data were collected in focus groups and in- depth interviews with carers of people with dementia ( n = 35) and analysed thematically using the framework approach. The aim of this analysis was to understand differences between the experiences of the carers


| INTRODUC TI ON
In the United Kingdom, an estimated 885,000 people currently live with dementia (Wittenberg et al., 2019), supported by at least 700,000 unpaid carers (Alzheimer's Research UK, 2015). On average, carers report poorer well-being than non-carers ( Van den Berg et al., 2014) and as caring commitments increase, so health-related quality of life decreases (Thomas et al., 2015). Carers of people with dementia have been shown to have significantly poorer healthrelated quality of life, greater comorbid risk, higher work absenteeism and greater healthcare resource use than non-carers (Goren et al., 2016). There is also evidence to suggest that they experience greater strain and mental and physical health problems than carers of people with other conditions (Dassel & Carr, 2016;Hirst, 2005;Pinquart & Sörensen, 2003;Schoenmakers et al., 2010).
While much is known about the challenges facing carers of people with dementia, less is known about how to support them effectively. A meta-review of the international evidence on interventions to support carers found some promising evidence (with specific reference to carers of people with dementia) for cognitive reframing, psychosocial interventions, educational interventions, meditation-based interventions, telephone counselling and support groups (Thomas et al., 2017). These interventions seem somewhat disparate in content, but the authors note that they all bring carers together with 'people who know about dementia' in one way or another (p. 76).
Case management is one approach that has shown potential in supporting people with dementia and their families (Iliffe et al., 2019). The NICE dementia guideline (2018) identified moderatequality evidence (from eight randomised controlled trials) that case management reduced carer burden, improved quality of life for the person with dementia and reduced rates of entry into residential care (although on other measures such as carer depressive symptoms and carer quality of life there appeared to be no difference against usual care). Larger gains were seen in studies where the case manager was a nurse providing face-to-face support in the person's home with frequent follow-up.
Case management is a specific approach that originated in the United States in the 1970s (Dening et al., 2017) and is now used internationally to support people with a range of long-term conditions, particularly those affecting mental health (Dieterich et al., 2017). It can be defined as 'a collaborative process of assessment, planning, facilitation, care coordination, evaluation and advocacy for options and services to meet an individual's and family's comprehensive health needs…' (Case Management Society of America, 2017).
Research about dementia case management provided by nurses in the community is sparse, with most studies of dementia nursing tending to focus on nursing home or acute settings (e.g. Ellison et al., 2014;Griffiths et al., 2013;Williams et al., 2005). Even for general populations of people with long-term conditions, evidence on case management approaches is limited (Knapp et al., 2014).
One UK study of nurse case managers of people with long-term conditions found that these nurses were valued for their clinical expertise, provision of continuity of care and the therapeutic effect of the psychosocial support they provided (Goodman et al., 2010).
One study of intensive case management for people with dementia in the Netherlands indicated that this model may improve quality of life and be more cost-effective than a less intensive alternative (or usual care;MacNeil Vroomen et al., 2016). An American study comparing the outcomes of an existing dementia case management service with nurse case management for dementia found that carer outcomes (stress, well-being and endurance potential) for the nursing group were substantially more positive than for the comparison group (Specht et al., 2009).
In the United Kingdom, the only specialist nursing case management service specifically targeting carers of people with dementia is Admiral Nursing (Dening et al., 2017). Admiral Nurses are registered nurses who have specialised in the care of people with dementia and their carers. Each Admiral Nursing service is operated as a partnership between Dementia UK (a registered charity https://www.demen tiauk.org/) and a host organisation (NHS, local authority or third sector). A systematic review of Admiral Nursing (Bunn et al., 2016) concluded that carers tend to express high levels of satisfaction with this type of service, but found little robust evidence for its cost-effectiveness. In order to begin addressing this gap, we undertook a study to understand the context within which Admiral Nursing (as a UK example of specialist nursing case management for carers of people with dementia) is delivered, along with its potential effects and the feasibility of full-scale evaluation. The full findings of this study are published elsewhere (Gridley et al., 2019). In this paper, we present findings from our qualitative analysis of the carers' accounts of experiences of support collected as part of this larger study.

What is known about this topic
• Carers of people with dementia face multiple challenges • Case management is increasingly seen as a promising approach to support carers and people with dementia but little is known about the key features of an effective service.

What this paper adds
• Our findings suggest that relationship continuity is central to carers of people with dementia feeling supported.
• The relationship continuity that carers in our sample said contributed to feeling supported had three key elements: 1. Ongoing support over time 2. Expertise in dementia 3. A meaningful relationship (between the practitioner and carer) leading to an understanding of the carer's unique situation We note in the full report that the carers in our qualitative sample appeared to consider 'feeling supported' as an outcome in itself, in keeping with previous research that identified 'feeling supported and encouraged' as a core element of quality of life (Rand et al., 2015). Moreover, the carers with Admiral Nurses were more likely to report feeling supported than those without an Admiral Nurse.
We therefore set out, through further analysis, to understand the reasons behind this. A key theme in our analysis was continuity and so we drew on Freeman's model of continuity of care to help organise and make sense of our findings (Freeman et al., 2000).
According to Freeman, continuity is multidimensional, consisting of continuity of information; cross-boundary and team continuity; flexible continuity; longitudinal continuity; and relational (later relationship) continuity (Freeman et al., 2007).

| ME THODS
We aimed to recruit 30 carers, purposively sampled to represent a wide range of characteristics and circumstances, roughly half with an Admiral Nurse and half without experience of this service.
Carers were invited to take part by Dementia UK in two geographical areas with Admiral Nursing (AN areas) and through alternative routes (including carers' centres, carer-led peer support groups and the tide-Together in Dementia Everyday-network) in two comparable areas that did not have an Admiral Nursing service (non-AN areas). Those who expressed an initial interest were contacted by a researcher (not affiliated to Dementia UK) who discussed the research in more detail, answered any questions and obtained written informed consent. Participants were asked which mode (focus group or interview) they would prefer and of- We used similar in-depth, qualitative methods in both the interviews and the focus groups to explore with carers the outcomes they felt they had, or would like to have, experienced from support services, as well as the outcomes of not receiving support and what contributed to these outcomes. Topic guides were structured around established types of carer support, such as emotional and financial support (King's Fund Informal Care Programme, 1988).
Focus groups and interviews were audio-recorded (with participants' permission). All interviews and one of the focus groups were fully transcribed and data from five other focus groups were incorporated directly from the audio files (Halcomb & Davidson, 2006). The lead author led the data collection and analysis, with support from the principal investigator. We used the framework principles of data reduction through summarisation and synthesis to organise our case and theme-based analysis (Ritchie & Lewis, 2003). A central chart was then devised to map experiences of support against type of support with thematic categories, including 'continuity over time'; 'relationship with a professional' and 'expertise in dementia' developed inductively. Freeman's model was then mapped onto this chart to identify areas of convergence and divergence.

| FINDING S
Thirty-five carers of people with dementia took part in total. While we recruited a slightly larger than anticipated total sample, we were unable to recruit participants from a diverse range of ethnic backgrounds. The female-to-male ratio was more reflective of the spread in the wider population, as was the spouse-to-adult child ratio, and these ratios were mostly consistent across the AN and non-AN sites (see Table 1).
Across the four sites, we carried out six small focus groups (each had two to five participants) in a range of venues including a church hall, a community centre, a university meeting room and a carer's house. A further 13 in-depth interviews were conducted (including one joint interview with a father and daughter of the same person)all in participants' own homes.
Application of Freeman's model of continuity of care (Freeman et al., 2000) highlighted the importance of relationship continuity in particular as a factor contributing to carers feeling supported.
Relationship continuity in this context required three key elements: 1. Ongoing support over time 2. Expertise in dementia 3. A meaningful relationship (between the practitioner and carer) leading to an understanding of the carer's unique situation While these elements are interrelated, we address them in turn below in order to demonstrate their importance to the whole.

| Ongoing support over time
Participants valued the ongoing, accessible support provided by a named professional over time. The Admiral Nursing models operating in our research sites tended to require nurses to be allocated to families over the long term. Thus, while these nurses might have had periods of lesser or greater activity with a family, depending on the carer or the person with dementia's needs at particular times, they generally remained involved at some level as the dementia progressed. Participants explained that having regular contact (telephone and email, as well as face to face) with an Admiral Nurse over an extended period of time meant that, when new needs arose, they knew who to turn to for support. It was easy to contact their nurse if they had a question and they felt that they could rely on the answers they received because the nurses were experts in dementia and familiar with their circumstances.
This continuity in itself was unusual in the experience of many of the carers. Social services closed cases when discrete pieces of work were completed, reallocating service users to the next available social worker if and when a new need arose (or even the same need recurred). While GPs might once have provided some continuity, it is now less easy in England for people to see the same doctor each time they attend their practice (Freeman & Hughes, 2010). Even some of those who had regular memory service appointments complained that they saw different professionals each time they attended. In this context, a named practitioner allocated to a family was highly valued. This did not have to be an Admiral Nurse; some participants in areas without Admiral Nursing had other named professionals allocated to them (e.g. a psychiatric nurse or a social worker), but they explained that the key to feeling supported was that they had developed a relationship with a well-informed professional over time. Here, relationship continuity facilitated management continuity, whereby support is coordinated across boundaries to smooth the involvement of multiple services and practitioners (Haggerty et al., 2003).

| Expertise in dementia
The expertise of the Admiral Nurses was a subject participants re- This information does not have to be provided by an Admiral Nurse.
One participant in an area without Admiral Nursing said that he had similar support from a psychiatric social worker and the senior staff nurse above her. This (NHS) social worker visited him monthly for 3 or 4 years and he described her support as 'extremely good' (NAN1FG2).
The key here was that information was being provided by a worker who was highly qualified (and supported by a clinical team), visited regularly and stayed involved for a long period of time. This participant's experience was, however, an exceptional case in our data. His experience contrasted with most other accounts from people without an Admiral Nurse who tended to obtain information piecemeal, often in writing or over the Internet: We were given documented information which we took away with us, but other than that really, from admission, we weren't given anything…and then there was no input from anybody apart from just 4-6 monthly appointments with the consultant… (Non-AN Site 2, Focus Group 1).
I've got a couple of books at home that I found really helpful, but I found them too late (Non-AN Site 1, Focus Group 1).
Some found online forums such as the Alzheimer's Society's 'Talking Point' a useful resource, both for information and for emotional support, but still these tended to be 'stumbled across' (NAN1FG1) rather than systematically referred to. One participant expressed his dismay at being told to 'Google it' when he asked a professional for some specific information about a service (NAN2FG1).
Some found that they knew considerably more about the condition-through their lived experience and their own research online and in books-than the professionals they came into contact with, which they found frustrating and unhelpful. This was particularly so in the case of rarer forms of dementia such as frontotemporal dementia (FTD). One focus group participant from an area without Admiral Nursing was surprised and delighted when he met an Admiral Nurse in another city who did know about FTD: It was one of those epiphany moments of 'Oh my god, someone knows what FTD is!' (Non-AN Site 2, Focus Group 1)

| A meaningful relationship leading to an understanding of the carer's unique situation
The Admiral Nurses themselves, by virtue of their expertise in dementia and close relationships with families, were felt by many to 'get it' in a way no one else did: The However, a professional simply visiting regularly was not enough to provide the desired personalised service; they had to engage with the family and take an interest in their circumstances.
In one of the focus groups in a non-AN area, for example, a carer explained that a community psychiatric nurse (CPN) came to the house at roughly 6-week intervals for a half-hour chat with his wife. The CPN would 'tick some boxes' on these occasions and then leave without speaking in any depth to the carer. There was rarely opportunity for the husband to say much to the CPN about how he was feeling or what he was struggling with and as such he did not feel particularly supported by the nurse. By way of contrast, a carer with an Admiral Nurse who visited regularly said that he saw these visits as a source of comfort and the Admiral Nurse 'like a friend'. He was aware that this nurse was continually assess- This was not the only carer who talked about their Admiral Nurse as a 'friend' or commented on the 'bond' they had. The difference, however, between the nurse asking about the carer's mental health and a friend doing so is that, as an expert in dementia care, the nurse can pull in or directly provide appropriate support if and when unmet needs are identified: It's having somebody who's knowledgeable in that field who can, oh right, OK, you're gonna need this, you're gonna need that, and how's about the other… (Interview with AN1C1).
While not all of our participants with an Admiral Nurse said they had gone to their Admiral Nurse for emotional support, they did all say that they felt they could if they needed to. The over- Anyone who's dealt with dementia can give you practical tips, but the Admiral Nurses properly get to know you, care for you, and provide the essential emotional support… somebody understands, and that, I think, is more important than anything… (AN Site 2, Focus Group 1).

| D ISCUSS I ON
Admiral Nursing is a UK-based model of case management, but there is growing interest internationally in case management for dementia care (Reilly et al., 2015) and the factors that contribute to the success or otherwise of such models (Goeman et al., 2016). This paper presents the findings of analysis of qualitative data provided by carers of people with dementia for a study about specialist nursing case management, using Admiral Nursing as an example. We compared the experiences of carers who had an Admiral Nurse against those who did not, paying particular attention to the factors that contributed to carers expressing that they felt 'supported'. Participants with an Admiral Nurse consistently reported feeling well supported by these nurses, even if their experiences of other professionals and services were patchy. Carers without access to an Admiral Nurse or equivalent tended to describe their support in less positive terms with some describing sensations of 'sinking' or not knowing where to turn.
The Freeman model of continuity of care (Freeman et al., 2000) was helpful in making sense of our findings. Relationship continuity in particular appears to be centrally important to the experience of carers of people with dementia. 'Relational support' (including taking a carer-centred approach, providing individually tailored support and being a 'friend') has been established as a key feature of the Admiral Nursing service (Bunn et al., 2016

| Limitations
While our approach to recruitment for this study was purposive in intent, it was pragmatic in execution. Participants in the Admiral Nursing group were initially invited to take part by Dementia UK, as they run the Admiral Nursing services and so have direct access to carers' contact details. While guidance was given on how to select participants, we cannot guarantee that there was no bias in the sampling towards positive experiences. This could go some way towards explaining the consistently positive messages from participants with Admiral Nurses about the outcomes of the services they received.
However, the focus of the analysis presented here is factors which contribute to these positive outcomes. As such, while we may have missed some negative cases, we can be fairly confident in our conclusions about the role of the three elements of relationship continuity we identified in the achievement of positive outcomes.
The most notable gap in our data is the experiences of carers from black and minority ethnic groups. While data from our subsequent survey do show that Admiral Nurses support carers from a wide range of ethnic backgrounds (Gridley et al., 2019), these were not present in our qualitative sample. Similarly, we were unsuccessful in recruiting carers from black and minority ethnic groups in the non-Admiral Nursing sites. As a consequence, our findings cannot be said to be generalisable to all groups. It is likely that a more targeted approach to recruitment (e.g. through specialist organisations) is required to address this gap.

| CON CLUS ION
In summary, the relationship continuity described above had three key elements, each of which appeared to be required for carers to where all three elements were combined were rare (we only identified one of a psychiatric social workers supported by a clinician).
As such we would conclude that specialist nurses working closely with families over time, as Admiral Nurses do, are in an optimal position to deliver relationship continuity, contributing to carers of people with dementia feeling supported.

ACK N OWLED G EM ENTS
We would like to thank all the members of our project advisory group, including those on our 'virtual' advisory group. A special thank you goes to our carer members -Ray Carver, Frances Garside and Frank Arrojo -who provided invaluable comments and guidance throughout the study. Indeed, thanks must go to all the carers of people with dementia who took part in this project, both as participants and as advisers, when they had many other demands on their time and energy. Thanks must also got to TiDE, Dementia UK, the Alzheimer's Society and the Life Story Network CIC who helped us to make contact with carers.

CO N FLI C T O F I NTE R E S T
Ms Kate Gridley -no conflicts of interest; Dr Gillian Parker -no conflicts of interest.

DATA AVA I L A B I L I T Y S TAT E M E N T
Author elects to not share data (consent was given by research participants for their data to be used only for this specific study).