Facilitating social coping-'seeking emotional and practical support from others'-as a critical strategy in maintaining the family care of people with dementia.

The aim of this study was to identify how the family care of people living with dementia could be supported to make reliance on family care sustainable in the long term despite the impact of stress. A Realist Evaluation (Pawson & Tilley, 1997) was conducted to investigate this aim. An initial review established 'coping' as a primary means of mediating stressors associated with caregiving. However, there was a need to specify which coping approaches/strategies are most effective. In-depth interviews were conducted with a purposive sample of family carers (n = 18) in a suburb in North East England from 2016 to 2017. Analysis of the data revealed 'social coping' (SC) that included an emotional support component as a critical mediator of family carer stress. Several key hindrances to the utilisation of SC, including underpinning causal factors, are explicated. Ways in which these hindrances might be overcome are discussed and guidelines introduced for how family carers, formal providers and practitioners can facilitate SC as a critical coping strategy in sustaining the family care of people with dementia over the long term.

generally strive to accommodate this. In the UK Governmental policy (DOH, 2015) also explicitly favours continued reliance on care in the community/family carers to provide the majority of care, prioritising care in the home/independent living for as long as possible.
Family care research has primarily focused on the negative impact on carers' health as assessed by 'burden of care' measures (Bastawrous, 2013) which emphasise carers' 'psychological dysfunction'/negative consequences of caregiving (Kramer, 1997).
The 'burden of care' paradigm has also narrowed formal providers' policy focus on 'relieving carers' heavy burden', e.g. via respite care (O'Shea, Timmons, O'Shea, Fox, & Irving, 2019). This paradigm portrays family care in a somewhat negative light, i.e. as fundamentally 'burdensome' and unsustainable. Arguably, such a perspective remains incompatible with governmental policy throughout Europe that promulgates the need to make family care sustainable (Glasby & Thomas, 2018). This has led to calls for new care paradigms that present ways to support carers to cope with long-term care (Carr, Wolkowski, & Parkinson, 2019) and fulfil policy ambitions to make domiciliary care/living out a good quality of life within communities a priority for older people (Curry, Castle-Clarke, & Hemmings, 2018). However, a key issue this study investigated concerned how such a paradigm shift can be facilitated.

| Policy relevant to this research
The location for this study, a N.E. England suburb, was particularly affected by council budgetary cuts which exerted significant impact on adult social care policy/budgets throughout the duration of this study (2016)(2017)(2018) when Government-imposed 'austerity measures' were in place. Between 2010 and 2019, the local council was forced to save £168m, losing 40% of real spending power (Centre for Cities, 2019).
While the issues/challenges outlined here were salient in N.E.
England (Marmot, 2020, p.142), they are far from unique. Areas also affected include the Midlands and Southern coastal towns (Marmot, 2020, p.93) and a further 25 areas ranked with worse levels of deprivation than the study area (TEIOD, 2019). Moreover austerity was not the only driver for policy/practice leading to limited support for carers in England. Arguably, the most important driver was Central Government's limited response to making family care of people with dementia sustainable. Provision of preventative services by many local authorities in the UK was severely hampered (Curry et al., 2018), exacerbated by chronic under-funding of social care and substantial cuts to adult social care budgets from 2010 onwards (Brimblecombe, Fernandez, Knapp, Rehill, & Wittenberg, 2018a). In England 77% of carers received no support that might assist them to cope (CQC, 2018), despite carers facing substantial physical, psychological and financial challenges (Brimblecombe, Fernandez, Knapp, Rehill, & Wittenberg, 2018b)-a situation replicated throughout Europe (ibid). 'Coping' is the process by which we try to manage stress (Lazarus & Folkman, 1984) via constant cognitive/behavioural actions.

| Coping
Perceived stressors are evaluated as demands which exceed our current resources (ibid). Crucially, it is not stressors but how people cope with stressors that will determine the consequences for health and well-being (Dijkstra & Homan, 2016). An important feature of the findings is that while the focus of much previous research has been on 'care as burden' (Hughes et al., 2014;Svendsboe et al., 2016) and its assumption carers will inevitably succumb to stress (Cheng, 2017), this paper details how carers can be supported to maintain family care. Coping represents a mediator variable that is modifiable and lends itself to interventions to deal with stress.
However, what is less well known is which coping approaches/strategies carers find most effective and how these might be promoted (Sun, 2014;Tang, Jang, Lingler, Tamres, & Erlen, 2015).

| Social coping
Social coping (SC) has been loosely captured by the umbrella title: 'seeking social support' (Folkman & Lazarus, 1980;Vitaliano, Russo, Carr, Maiuro, & Becker, 1985) and is based on Lazarus and Folkman's (1984) coping theory. It is included in the Transactional Model of coping and Ways of Coping Checklist-Revised (Vitaliano et al., 1985). Its significance as a coping process was underlined by Thoits (1986) who identified SC as pivotal in providing relief from stressors. Factor analysis and the distillation of some 161 coping responses pinpointed SC (under its broader title 'seeking support') as one of the most critical coping processes at our disposal (Amirkhan, 1990). This was confirmed What is known about this topic • Dementia prevalence predicted to increase exponentially; • Majority of dementia care delivered by family carers and estimated to reduce carees' risk of institutionalisation by a factor of 20; • Family carers of people with dementia face high levels of stress that precipitates cessation of care: an issue seldom fully addressed.

What this paper adds
• Social coping (SC) presented as a critical strategy to the long-term maintenance of family care; • Causal mechanisms that hinder/promote SC exposed, paving the way for clearer guidelines for how providers/ practitioners can contribute to carers' use of SC.
by Zautra, Sheets, and Sandler (1996) who identified SC as one of the four essential coping strategies. The four factor solution produced (ibid) has since become a cornerstone of coping theory/research.
The definition of SC employed here: 'seeking emotional and practical support from others'-reflects this study's consistent finding that in the context of family care SC often includes an emotional support component as a critical mediator of stress. This represents an important addition to seeking practical support.
The findings offer guidelines for the construction of a new care paradigm based on sustaining family care that might inform future policy/practice.

| Aims/objectives
Phase 1 of this multi-phase Realist Evaluation (Pawson & Tilley, 1997) investigated 'what works to support family carers' despite the impact of stress. This initial phase (Rapid Realist Review) (RRR) (

| Purpose of this paper
The paper focuses on the relationship of carers to formal service provision and how formal providers and practitioners* can facilitate SC to make family care of people with dementia sustainable.
*Hereafter, reference to 'providers' can be assumed to refer to 'formal providers', including 'practitioners.' The exception will be where specific reference is made to 'informal providers,' e.g. those working in the voluntary/charity sector.  (Pawson, 1996) and was employed to uncover critical coping strategies utilised by carers. In-depth inter-

| Participants
Participants provided informed consent to their participation in the research. Recruitment of carers took place via voluntary sector organisations situated within a suburb in the North East of England.
Gatekeeping ensured participants included a mixed group with some regular voluntary sector attendees, but an equal number who seldom made contact. Balance was important since carers' utilisation of this sector can confer emotional/social advantages over non-attendees (Smith, Drennan, Mackenzie, & Greenwood, 2018).
Recruitment was narrowed by location to ensure relative parity regarding carers' access to local support services and to permit clearer comparisons between participants. Purposive sampling criteria were used (Table 1).
These criteria targeted a specific population, yet remained flex-

TA B L E 1 Purposive sampling criteria
• Carers were selected who were aged 50 to 79 years of age. This excluded carers aged 80 or over who were statistically more likely to have the additional challenge of dealing with their own co-morbidities. Imposing this criterion helped to keep to a minimum this additional layer of complexity to the family care of people living with Alzheimer's disease, allowing a greater focus on the care-based factors which affect carers and how these might be addressed. • This age limit allowed comparability between participants, but without making the age restriction so rigid it prevented recruitment of sufficient numbers of participants. It also ensured some heterogeneity in the sample. • Family carers of people living with AD were selected to provide greater specificity regarding the context of care. However, since AD represents the most common form of dementia in the U.K. accounting for some 62% of all cases (Age UK, 2015), selecting carers from within this population group assisted the generalisability of the findings. • Participants were sought via their contact details which were held by the Alzheimer's Society branch based in the South Tyneside area of the North East of England. Recruiting family carers of people living with AD from a similar geographical area helped to ensure that the range of services available might be comparable. • Carers were required to have been caring for a minimum of 12 months at the time of interview to ensure that they had gained sufficient experience of caregiving to be in a position to provide rich and detailed feedback during interviewing. TA B L E 2 Wide-ranging sample characteristics to introduce some heterogeneity to the sample rigorously achieved by collecting large amounts of data to ensure sufficient data to explain how causation is generated. In RE data collection termination decisions tend to be reached once sufficient data is gathered to meet these criteria and no new information/insights emerge.

Age of carer
Here this was juncture was reached by the eighteenth interview. These criteria replace reliance on 'data saturation' per se and acknowledge the iterative nature of RE (ibid) and its premise that findings will be further confirmed/refined/refuted by subsequent research/researchers.

| Ethical approval
Ethical approval (HLS-PHW151616) for this study was granted by the Faculty of Health and Life Sciences Research Ethics Committee at Northumbria University.

| Findings
The dominant finding was the need consistently expressed by experienced carers to adopt SC as an essential coping strategy. These carers had learned the hard way to embrace SC as a means to recruit external support and/or reported that such a strategy came highly recommended by experienced voluntary sector staff.
Those not directly immersed in family care on an every-day basis may be unaware of how systemic problems associated with delivery of carer support and the unique context of family care currently limit the potential of SC. This study unpicks some of the complexity surrounding these issues to reveal how six factors may be instrumental in determining the utilisation/effectiveness of SC. Each factor is presented in turn in the following section.

| Recognising current range of service options may be too rigidly fixed
SC was hindered where service options were strictly limited and bound by a predominantly medicalised approach-a finding supported A pattern was set from the outset in which carers perceived the only option was to develop independence regarding caregiving in the absence of offers of external support. This pattern became normalised.
Carers even took pride in managing autonomously: "Up until this point I've never really felt the need to do that (invite external support) and I've also I suppose been quite independent and wanted to sort things out myself." (P10).
However, dementia represents a highly variable/unpredictable disease. As symptomatology deteriorates, the challenges carers encounter tend to increase in frequency and severity, but in a progressive, incremental manner carers may not be fully alert to: "You had to continually adapt…you get drawn into it further and further…it…evolves without you realising, you just had to react all the time." (P8) Once the full import of becoming habituated to autonomy is realised it may be too late: "And then a year went by and I couldn't do it any-

| SC often limited to practical support
Carers frequently cited being offered practical support by providers.
While valuable, this omitted carers' often stated but unmet need for personalised/individualised emotional support: "The most important thing I appreciate…one to one with somebody who will listen, someone who is caring." (P12) "Often…this doesn't apply to anyone else in the room-I want to talk to them one to one." (P10) For SC to be encouraged it needs to be capable of meeting carers' wider spectrum of needs. Providers' promotion of the value of emotional support and facilitation of access to it needs to be considered: "A lot of people are proud and say they don't need this, but yes they do, they need someone to talk to." (P17)

| Lack of provider consensus regarding what carers need
The uniqueness/complexity of dementia and family care associated with it, which can be highly individualised, calls for tailored support (Anderson, Nikzad-Terhune, & Gaugler, 2009  This can leave carers/carees more isolated than ever when deteriorating symptomatology may already seriously limit socialisation, exacerbating loneliness:

| Flawed assumption SC will be provided for by relational support
"The problem is the isolation of the carers. So if the carers can get out…Now because they are isolated it is impossible to even start that. It's a vicious circle." (P17) High levels of isolation/loneliness are commonly experienced by carers/carees (Kovaleva, Spangler, Clevenger, & Hepburn, 2018) and strongly associated with early cessation of family care (Gaugler, Yu, Krichbaum, & Wyman, 2009). There is a need to move beyond flawed assumptions about SC being provided for by relational support and towards providers' wider exploration of interventions to address carer/ caree isolation.

| Overcoming carers' tendency to adopt a short-term perspective
Carers universally adopted a short-term perspective regarding dayto-day management of care: "I've had to stop looking at the picture long term…to live in the moment, which is hard for me…So, I have to take it a day at a time. The old cliché: a day at a time.
It's actually an hour at a time-sometimes it's a minute at a time…and respond to everything that comes up… rather than become overwhelmed." (P4) While this approach allowed carers to focus on the task in hand, rather than be overwhelmed by the challenge of dementia care, it also presented a significant hindrance to forward planning. Strategic planning often becomes essential, particularly where a finite number of services exist and access depends on carers' ability to arrange support well in advance. Carers' employment of SC was limited where external support was contingent on long-term planning/a long-term perspective: "You just take things from day-to-day. It works better than trying to plan too far ahead." (P14) Promotion of SC relies on providers' ability to offer support flexibly/at shorter notice, overcoming carers' tendency to adopt a shortterm perspective. However, this study reveals this relies on overcoming six principal hindrances.

| D ISCUSS I ON
Hindrances included providers' relatively fixed response to carers' needs, manifest in a predominantly generic, medicalised approach based around quasi-institutional settings. In England, this is reflected in the general advice given to carers which steers them towards day centres/respite care (NHS, 2018). The majority of carers/ carees in this study expressed concern that transition to quasi-institutional settings was perceived to represent a staging post for full institutionalisation-a finding endorsed by previous studies (Batch & Mittelman, 2012).
Carers'/carees' preferred option was 'ageing in place,' relying on community/domiciliary care-a finding also replicated by previous studies (Kampanellou et al., 2019). 'Ageing in place' represents a policy objective that is high on the agenda, including in the UK (NHS Long-Term Plan, 2019). However, a setback is how to move away from previous reliance in many parts of Europe, including the UK, on long-term care (LTC) models that promote institutional care (Challis, Darton, & Stewart, 1998 Stephan's, Möhler, Renom-Guiteras, and Meyer (2015) call for research to examine the intricacies involved in forging such collaborations.  (Dickinson et al., 2017), dementia cafés (Greenwood, Smith, Akhtar, & Richardson, 2017) and reminiscence groups (Charlesworth et al., 2016). Services can also be designed that are cost-effective, e.g. emotional support via tele-medicine (Waller, Dilworth, Mansfield, & Sanson-Fisher, 2017)  Currently, the paradox remains that while family carers are recognised as forming 'a critical and valuable part of any high-quality local health and social care system' (CQC, 2018, p.28), even the UKthe world's 5th largest economy (IMF, 2019)-allows the majority of carers to absorb the bulk of the pressure for care provision with no support (CQC, 2018, p.21). This stymies carers' employment of SC and the future outlook continues to generate concerns with minimal steps towards cross-party talks to find consensus on the future of social care and no clear proposals for reform (Holmes, 2020 Hindrance to carers' adoption of SC stemmed from formal providers' flawed assumption that SC will be provided for by relational support-a point also raised by Wolkowski et al.(2017).  (Powell & Baker, 2019). While welcome, this does not solve the problem of isolation on its own. Carers are highly vulnerable to social exclusion (Greenwood, Mezey, & Smith, 2018) which affects 83% of UK carers (Carers UK, 2015). A dearth of research exists that addresses this issue (Keating, Eales, Funk, Fast, & Min, 2018).
The UK Care Act (2014) recommends local authorities promote carers' wellbeing through social activities, however precise details of how this will be achieved are lacking .
A further finding was that as the care journey advanced, carees' deteriorating dementia symptomatology combined with carers' exposure to care-based stress (spanning several years) often compelled carers to adopt a short-term perspective. Although this can provide a means of compartmentalising family care into more manageable chunks of time, it presents a significant barrier to SC and the recruitment of external support that often relies on longer-term planning. Therefore, promotion of SC relies on developing a supportive infrastructure capable of co-ordinating support efficiently and at short notice.
Remoteness/disengagement from support systems and services has led to carers being called the 'silent army' (Brown, 2018) and 'the invisibles' (Carmeli, 2014). This study recommends a new care paradigm that embraces a holistic approach to the promotion of SC with a focus on facilitating carers' receipt not only of practical support, but crucially also emotional support to make family care sustainable. Carer coping that facilitates 'ageing in place' relies not only on individuals' adaptive strategies, but also close collaboration with a wider network of support services (health care providers, social services, voluntary/charity sector). SC represents a critical strategy in the mediation of stress, but it also performs a critical function as a 'bridging mechanism' that facilitates closer integration/networking with wider sectors. However, SC is only as effective as the quality of support it elicits and this is very much contingent on the reciprocity of providers operating collaboratively with carers.
Above all, SC relies on achieving a balance that facilitates its potential to enhance the sustainability of family care. This balance is contingent on addressing six principal hindrances ( Figure 1).

F I G U R E 1
Social coping model: achieving a better balance by addressing the six principal sources hindrances to SC and maximising its potential to enhance the sustainability of family care of people with dementia in the long term

Facilitators to carers' employment of SC
It is likely the findings possess translational potential to other, perhaps similar carer groups-particularly those who care for people with other chronic/irreversible conditions.

| Future Research
Future studies might examine whether females are more disposed towards emotional support than males and whether males need encouragement to recruit emotional support. Differences could also be explored between urban/rural populations regarding availability/ accessibility of support and how this may differentially impact on carers' propensity to engage in SC. Carers from BAME cultures may have different attitudes/perceptions to SC and generally reduced access to services compared with Caucasian participants in this study. Factors which facilitate/hinder SC for BAME groups may differ from those outlined here.

| Strengths of this study
• Realist Evaluation can provide the level of specificity needed to address complex social issues and tailor solutions to meet the needs of specific populations. • SC is revealed as a critical coping strategy/factor in determining carers' ability to maintain family care of people with dementia. • SC supports 'ageing in place.' • Causal mechanisms that hinder SC are exposed to pave the way for clearer guidelines for how providers can facilitate its employment by carers. • Family carers' perspective. • Wider translational potential.

| Limitations of this study
• Reliance on a cross section of participants. • The need for further longitudinal studies to examine SC alongside other adaptive coping strategies. • The need for studies beyond N.E. England to offer regional comparisons. • Consistent with the principle of iterative inquiry (Pawson, 2013) there is a need to build on this research and take the findings forward.

| E THIC AL CONS IDER ATIONS
Full ethics approval for this study was granted by The Faculty of

Health and Life Sciences Research Ethics Committee at Northumbria
University.

ACK N OWLED G EM ENTS
Dr. Mark Parkinson led the project which this paper is based on while employed on a PhD studentship. The studentship was funded by The authors also acknowledge the kind support and involvement of all the family carers who made a valuable contribution to this research.

CO N FLI C T O F I NTE R E S T
There are no conflicts of interest presented by this paper by any of the authors.

AUTH O R CO NTR I B UTI O N S
MP reviewed the full texts, assessed the risk of bias, extracted the data and wrote the paper. SC critically reviewed the content of the paper and contributed to revising the paper. CA critically reviewed the original manuscript and contributed to its initial submission. All authors have approved the submitted version of the manuscript.