Information and care: A relational approach.

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Article

Information and care: A relational approach

Dementia 0(0) 1–16 ! The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1471301214527750 dem.sagepub.com

Marian Barnes, Flis Henwood and Naomi Smith School of Applied Social Science, University of Brighton, UK

Abstract This article explores how the provision of information about dementia impacts on carers and the caring relationships in which they are involved. Narrative interviews were undertaken with 25 carers who had undertaken the Alzheimer’s Society – run Carer Information and Support Programme in one of seven sites across London and the South East. Thematic analysis identified two major themes relating to the impact of information on carer and caring relationships (‘understanding and care’ and ‘emotional impact of information’), and another theme relating to the context within which the information was provided and shared (‘relational practices in information-giving and receiving’). Findings suggest that while information, particularly in the form of new knowledge about how dementia progresses, helps to improve understanding and increase confidence, competence and a sense of security and achievement in caring practices, it can also confound and complicate caring practices in ways that reflect and reinforce previously difficult relationships. Providing information in the context of carers’ support was important for most participants but others were less able to benefit from this, especially where they felt unrecognised or where the timing of information felt inappropriate to their needs. Our analysis complements and extends previous scholarship emphasising the relational nature of care by showing how information can both enhance and complicate care relationships, depending on both specific care contexts and on how carers experience the context of information provision. Keywords carers, dementia, ethics of care, information, logic of care

Introduction The experience of ‘becoming a carer’ is one that frequently involves entering into unknown territory, having to explore new tasks, negotiate new types of relationship and find out about clinical conditions, services and welfare entitlements that are all unfamiliar and present a Corresponding author: Naomi Smith, Social Science Policy and Research Centre, School of Applied Social Science, Mayfield House, University of Brighton, Falmer, Brighton, BN1 9PH, UK. Email: [email protected]

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bewildering array of individual challenges. It is not surprising that one of the key issues identified by carers from the time of their ‘discovery’ as a social group with their own needs is a need for information that can help them find their way through this unfamiliar terrain (Barnes, 1997). Lack of information about available services is one reason for low take up amongst people with dementia and their carers (Brodaty, Thomson, & Fine, 2005), but the significance of information goes well beyond basic knowledge about how to access services. The diverse significance of information is reflected in a variety of studies of people with cognitive impairments, with dementia and their family members and carers. For example, Downs, Clibbens, Rai, Cook, and Woods (2002) distinguished different positions taken by general practitioners (GPs) for sharing information about diagnosis with people with dementia and their carers. They argued that GPs’ reluctance to disclose information reflected the ‘old culture’ (p. 54) of dementia care in which the emphasis was on negative consequences rather than more positive ways of living with dementia. In a study of expectations and experiences of referral to a memory clinic, Cahill, Gibb, Bruce, Headon, and Drury (2008) identified anxieties associated with a lack of understanding of what assessments would involve and a wish to find out more about memory loss and what might be done about it. The study also identified a need for better clarity in diagnostic information provided following assessment. Boylstein and Hayes (2012) looked at spousal relationships where one partner had Alzheimer’s disease and concluded that gender-specific information about the complexities of both caring for and loving a spouse with dementia could help prevent a loss of marital closeness. Thus, information is associated with, and implicated in (at least): views about how people with dementia should be approached, the emotions that attach to professional interventions and the changed relationships consequent on the onset of dementia, suggesting that information has a more complex and situated relationship to care than is often supposed. Policy makers are paying increasing attention to the importance of information in health and social care. Policy documents position information as fundamental in both enabling better choices (Department of Health, 2010) and in supporting more integrated care (Department of Health, 2012a), with a recent strategy document arguing that information should be understood as a key ‘driver’ of good care and ‘core’ to the ‘business’ of care (Department of Health, 2012b, p. 6). This broad ‘inform to care’-type thinking can also be seen reflected in Department of Health’s Dementia Strategy for England (2009) which emphasises the objective of enabling better information. Although such documents are keen to stress the transformative power of information as a force for good, rarely is the information-care relationship articulated explicitly. Instead, good care is positioned as if it were a natural by-product of the widespread availability of good information, a view increasingly challenged by research (Henwood, Harris, & Spoel, 2011). Indeed, research by the Alzheimer’s Society (2010) showed that, despite improvements in the availability of information for carers, there continued to be unmet information needs, with little attention being given to the needs of people with dementia in particular. It recommended the development of a core information set to be provided at the time of diagnosis that would point the way to further sources of information and emotional support. The Alzheimer’s Society itself followed up this research by developing a programme of local courses that would deliver information to carers in a supportive environment. This article is based on analysis of interview data collected in an independent evaluation of this Carer Information and Support Programme (CrISP) carried out between April 2012



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and February 2013 (see Barnes, Henwood, Smith, & Waller, 2013 for a complete report of findings). Our aim in this article is not simply to report findings from that study but to contribute to the developing body of work that recognises the need to support relationshipfocussed care for those living with dementia (La Fontaine & Oyebode, 2013; Nolan, Ryan, Enderby, & Reid, 2002) and to explore how information is implicated in supporting or inhibiting this. There are two broad aspects to our analysis here: first, what information means for carers’ relationships with those they care for and, second, how the context within which information is provided and shared affects carers’ ability to respond positively and work with this within caring relationships. Following a brief description of the CrISP programme, we discuss our research methods. We then present our analysis and, before concluding, discuss the relevance of our analysis for key scholarship on relational care.

The CrISP programme ‘The Alzheimer’s Society (AS) CrISP programme aims to improve knowledge, skills and understanding of those caring for a person with dementia, by providing effective support and up-to-date, relevant and evidence-informed information’ (Alzheimer’s Society, 2012). The programme is designed to be delivered in two parts (CrISP 1 and CrISP 2). CrISP 1 is intended for carers and family members of those with a recent diagnosis and CrISP 2 for carers and family members of those who have been living with dementia for some time. CrISP 1 has four sessions covering understanding dementia, legal and money matters, providing care and support and coping day-to-day. CrISP 2 explores how dementia progresses and the changes associated with living with dementia through such progression. The programme is delivered by trained facilitators employed by the Alzheimer’s Society in what are intended to be safe, accessible environments in order to facilitate peer support and a shared learning experience. The programme is directed at carers and is not primarily a relational programme in the sense of working with people with dementia and carers together. However, the Alzheimer’s Society do view it as a means through which caring relationships can be supported. Thus, one aim of our evaluation was to assess the impact of participation in the programme not only on carers themselves but also on caring relationships.

Methods The evaluation adopted a qualitative methodology involving narrative interviews with carers who had participated in CrISP 1 and/or CrISP 2 courses. Twenty-five carers in seven sites in London and across the south east of England were interviewed. In five of the sites, carers had attended CrISP 1 , and in the other two, carers had attended both CrISP 1 and CrISP 2. Information about the study was circulated to all those who had attended the programme in those areas inviting them to take part, and the final sample was selected to include a diversity of care relationships, including both co-resident and non co-resident carers, carers in rural and in urban areas, spouse carers and adult child carers and male and female carers. One of the adult child carers also cared for a sibling. Most of the spouse carers lived with the person they cared for, but only about half of the adult child carers did. Most of those caring for a parent were in their 50–60s and most caring for a spouse were in their 70–80s. Those being cared for were between 70 and 85, and six of them were living in nursing or residential care. In five cases, the person with dementia had died before the interview took place. Interviews



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lasted between one and two hours and took place either in carer’s homes or in confidential spaces at local Alzheimer’s Society offices. Like Ryan, Nolan, Reid, and Enderby (2008), and following Arksey et al.’s (2004) review of evidence concerning the impact of respite care, we rejected the use of ‘off the shelf’ outcome measures to assess the impact of the programme on carers. Our relational perspective necessitated situating subjective responses to participating in the CrISP programme within the specific contexts and experiences of care giving and receiving found amongst participants. We adopted the narrative interview method to enable a fuller understanding of ‘the individual’s unique and changing perspective as it is mediated by context . . . ’ (Miller, 2000, p.12). Thus, we invited carers to tell us about how they became a carer and how their caring relationships had developed over time, before asking more focussed questions about their responses to the CrISP programme itself. In this way, we were able to analyse their accounts in the context of their different experiences of and responses to caring for a relative with dementia. Data were analysed thematically, while drawing on the narrative structure of interviews to prevent the loss of context that can accompany the thematic approach. Data were analysed manually, with initial coding of transcripts being undertaken by all team members, before being shared and refined to produce the final themes presented here. The study was approved by the University of Brighton’s Faculty of Health and Social Sciences’ Research Ethics and Governance Committee and in line with ethical procedures required by the Alzheimer’s Society. Anonymity of participants has been preserved by the use of pseudonyms throughout the analysis.

Analysis Thematic analysis identified two major themes relating to the impact of information on carer and caring relationships (‘understanding and care’ and ‘emotional impact of information’), and another theme relating to the context within which the information was provided and shared (‘relational practices in information-giving and receiving’). We present our analysis under these themes before going on to discuss how our analysis contributes to and extends other scholarship that takes a relational approach to care both dementia-specific scholarship (in particular, the ‘Senses’ framework research by Nolan et al., 2002) and broader work on both the ethics and the logic of care (Barnes, 2012; Mol, 2008)

The impact of information on carer and caring relationships Understanding and care. A recurring concern for carers of people with dementia is how to understand and respond to the changed behaviours that come with the disease, which are often experienced as a loss of the person they are familiar with. Carers we interviewed described how changed behaviours challenged their tolerance and patience, and added to a sense that they were at fault for not caring well. Thus, they particularly valued being helped to understand the actions of the person they cared for in the context of the nature and progress of the disease. Having this detailed knowledge enabled them to accept that the person was not being deliberately difficult and to see how their own responses could impact on those behaviours. In explaining the structure and functions of the brain and how it is affected by dementia, course facilitators used the visual image of a bookcase, where the shelves became



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progressively less tidy, more sparsely populated and finally completely jumbled. Alison, who cared for her father, described how significant this was in increasing her awareness of dementia and how it was for the person living with it: ‘ . . . the thing I tell people about most is the bookcase and I just think that is such a stimulating visual on how it works and I wish everybody in the country could see it’. Geoff described how he found information about the functions of the frontal lobe and the back lobe helpful in understanding ‘the things that . . . dad was doing’. A previous lack of understanding meant he sometimes lost patience and shouted at his father. By the time of interview, his father Charles had been admitted to residential care and Geoff was recovering from the strain of trying to care for him at home. His enhanced understanding was enabling him to move on from trying to reason with Charles, to simply ‘attending’ to him, through offering a daily shaving ritual, during which he felt Charles was still present to him. His description reflects a real sense of purpose and the maintenance of personhood: Oh he sits there and loves me shaving him. He sits there and his mouth is doing all the movements as if he was doing it himself . . . and I’ll comb his hair for him and he’ll sit there and he’ll say ‘is that me now’? Because he never used to go out without looking in the mirror to see his cap was straight or his hair was combed.

Others spoke of being able to combine information provided on the course with existing knowledge and skills to enhance their competence to care. Jenny, who had been a teacher of pre-school children, cared for her father George who had vascular dementia and lived at home with his wife. Understanding that this type of dementia is caused by mini strokes and that there were therefore possibilities for the brain to ‘re route’, led her to look at ways she could support George to relearn tasks such as making a cup of tea. Jenny used techniques similar to those she had used with children to help build an understanding of how to do what seems like a simple task, but in fact has a significant number of stages. She reflected: I mean he [course facilitator] described it brilliantly, you know, he said ‘it’s just, sort of, like driving along the road and say there’s an obstacle in the way, you can’t carry on that way, you’ve got to find another route’ . . . .

Although she knew that at some point there would cease to be alternative pathways in George’s brain, Jenny felt that she could make a difference to his day-to-day experience, and this gave her a sense of achievement as a carer. Another area of improved understanding related to how people with dementia perceive the world, including the people around them. Carers explained how they were helped to understand how people with dementia might perceive a rug with a particular pattern as a pond, meaning that they would not step on it to cross a room, and why a woman stopped using the bathroom with a mirror opposite the door because she thought the reflection of herself (which she did not recognise) meant it was occupied. Again, images were a powerful means by which this information was conveyed. Lesley, caring for her mother Edna, found such understanding ‘revelationary’ and recalled how it struck home with her: ‘it was just like, wow, never realised how powerful an image could be to somebody, and how that might translate in a mind that is scrambled, really, to a certain degree’. This was significant in shaping Lesley’s behaviour and caring practices. She developed insight into how Edna perceived what was happening around her and in



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particular how she dealt with sudden and unexpected change. Lesley adapted her behaviour by explaining to her mother what she was doing and preparing her for things that were going to happen which made a significant difference to Edna’s level of anxiety. Lesley felt that her attentiveness to Edna’s changing perceptions enabled the two of them to move into a different relationship. By focusing more on Edna’s responses to what was happening around her, Lesley felt more able to allay her anxiety and enable her to be more involved. Georgina (who cared for her mother Violet) also adapted her caring practices as a result of increased understanding of how someone with dementia experiences the world and people around them. Violet’s dementia was advanced to the stage that she often did not recognise Georgina, although she was more likely to recognise her voice than her face. At these times, Georgina went outside for a couple of seconds, and then said ‘I’m just coming, mom, I won’t be a minute’ and then re-entered the room. This way, her mother was able to ‘recognise’ her before seeing her. Georgina described how funny she found it when her mother would say ‘Has that other woman gone?’, to which she responded ‘Yeah’. She also described arriving at her mother’s home and offering her a cup of tea and being told ‘Oh don’t worry, Georgina will be here in a minute and she’ll do it’. Concerns that such responses were deceitful because they ‘played along’ with false perceptions, were mitigated by what carers learnt on the course. Georgina was able to reformulate her behaviour as a good way of ensuring that her mother felt safe, and she described such situations with great humour. Some of the carers we interviewed described how, as a result of increased understanding, they felt more able to support the person they cared for to express agency and to feel part of a reciprocal relationship. This recognition that they were ‘in it together’ and that there were still choices that could be made by both parties enabled more attentiveness to the way the person with dementia responded to their situation. Maureen described how she was better able to support her mother to retain involvement in decision making. When I say ‘Mum, let’s get somebody to come in and do your tablets which you’re having difficulties at the moment’, she doesn’t want someone there to do her tablets because that’s taking her skill away, that’s making her, ah, diminish her sort of sense again, sense of self. . .it’s not just about you as a carer, you’ve got to look at that person and think ‘how do they feel?’

Some carers were helped to see that there could still be reciprocity within the relationship and that they could develop this through the quality of the time they spent together and the attention they gave their relative. Thus, Tracie, whose mother Ruby was in a care home, described how she had found it possible to spend more time with her mother putting into practice some of the suggestions from the course ‘like sitting and looking at her, not talking, and cuddling her and holding her hand’. Tracie was open about the difficulties she had always had in her relationship with her mother but explained how, by listening and being aware of what was important to Ruby, she felt that things were changing. She described how she had taken some of her mother’s jewellery in and, whilst putting it on for her, had been really moved by her mother’s reaction: ‘she stopped and looked at me and she said, ‘‘I’m so lucky’’’. Tracie described how she felt she had got her mother ‘back’ and how she now approached their time together more positively. Whilst we do not have direct access to the accounts of people with dementia in these relationships, what Tracie described suggests that increased attention to the way in which their relative was responding to dementia, and to the care they were receiving,



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was helping to support a more reciprocal relationship. Lesley’s reflections are another example of this: You know, Mum is a joy. Yes, she has bad days, but she smiles, she can hug me, and you know, she tells me she loves me, she worries about me, er, she has all of her nurturing instincts. That’s another thing I learnt from the course, you know, the dementia doesn’t take away who the person is. It’s still my mum, she still can see if I’ve got pain, and she can see if I’m stressed.

The emotional impact of information. Our analysis up to now has highlighted the way in which information, in the form of ‘expert’ or professional knowledge, in particular, can facilitate attentiveness and enhance competence in care giving. However, the data also provide support for a more complex and nuanced account of the relationship between information and care which does not see this solely as a means to an end. It shows that we should not think of ‘information’ as undifferentiated, nor as simply contributing to rational understanding and more complete knowledge of dementia. Rather, information was shown to have emotional significance – in some cases enhancing confidence and acting to reassure carers that they were caring well; at other times, or for some people, seeming to unsettle caring relationships, either by raising anxieties in carers about their ability to cope or, as in some particular cases, acting to further unsettle already difficult relationships made more complex by the experience of living with dementia. Many participants spoke of the positive emotional impact of the information they had received, particularly on their levels of confidence and resilience in dealing with the challenges they faced. Jack, who was caring for his wife in the early stages of dementia, spoke of it as engendering a ‘positive attitude’ and continued: ‘this wasn’t something which we just had to meekly accept, you could take positive action to ameliorate its effects and I like the sort of optimism that was generated’. Georgina spoke of being given a ‘toolbox’ and the confidence to use the tools to create a ‘Heath Robinson Fix’. Jenny spoke of being able to be more confident in the things she had found out for herself as these were being confirmed on the course and Terry, who had experienced care from his father because of his own health problems, found the course ‘reassuring’ in that he was doing ‘95 per cent ok’ in caring for his dad, later adding, ‘there’s a lot of reinforcing that my behaviours were right, and even where they perhaps weren’t right, they weren’t far wrong’. Reassurance was also a theme for Peter, who attended the course after his mother had died. Peter felt that the course had ‘reaffirmed’ that what he had done for his mother was ‘correct’, saying: ‘it made me feel I’d done as much as I could’. Audrey spoke about feeling more able to cope, to ‘feel a bit strong as well’. Lesley also spoke of feeling stronger, more relaxed and more able to cope as her mum’s disease progressed. For Lesley, the course helped her deal with her own self-doubt: as she put it, ‘who’s to say I’m going to be a good carer? . . . maybe I’m not good at this’. She reported that she now felt ‘on a much more solid basis’, both in terms of what she knows and where to go if she did not know and while admitting that she still has ‘issues in certain aspects of care’, she declared: ‘I’ve astounded myself with what I have managed, and I’m quite proud of what I do . . . ’. The importance to carers themselves of feeling that what they are doing is significant and that they are achieving things they thought themselves incapable of is palpable in these responses. The carers cited here included those caring for both parents and spouses with dementia, but what is common is what were described as largely positive or unproblematic



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relationships prior to dementia. In this context, where ‘becoming a carer’ was seen as a relatively unproblematic development in the context of a loving relationship between wife and husband, or a positive decision to care for parents where there were no serious tensions, becoming more knowledgeable was part of a process of embracing an identity that people recognised as valuable and through which they could find new relational possibilities. This is perhaps most evident in the words of Jenny who cared for both her parents. She described how she saw her role: I just stood there and put both my hands up, you know, and I said, ‘Dad, you’re sitting there, mum’s sitting there and I’m just holding you both up and I want you both to go together like this’.

Jenny talked about using what she learnt on the course to help both her parents make decisions about their everyday lives through acting in a mediator role. This reflected the fluctuating mental state of her father and the potential for him to respond to positive support: I feel I’m supporting them to make these decisions because my father now is able to make more decisions, more of a choice which is what I’m encouraging, I’m encouraging my father to do for himself, this is part of what I call my caring, my caring role, that as I said helping my father to relearn.

This reflects the importance of her father contributing to the process of care and of enabling him to experience a sense that he can achieve things. She suggests that the confidence gained on the course better enables her to facilitate this. However, not all course participants experienced the availability of increased information in this way. It is important to acknowledge that, for a minority, information, especially when not seen as particularly relevant to individuals’ own situations at the time, can be perceived as frightening, often leading to increased anxiety. Linda described how she resisted looking forward because of her extreme sadness about what was happening to her husband. She commented, tentatively, ‘I suppose I wanted information’ before adding, ‘I don’t read too much about the bad news bits’ and then continued: I like to know what else there is, I do read about how they see the disease progressing and stuff like that but I tend to put that to one side and think ‘we’ll cope with them as and when they happen’. I like the practical things about the Power of Attorney and all that. My little bug bear is they say ‘it’s good to know early because you can plan what you want to do’ but there’s not really too much to plan. What do you plan? You live your life as best you can because you don’t know what path it’s going to take.

For Linda, living with dementia meant living with uncertainty and information could not resolve that. But where she was sad and did not experience increased information as a source of either greater competence or reassurance, Colin was angry and rather desperate about being told so much about the future of the disease. Colin was very self-conscious about being part of what he described as an ‘odd couple’ – he was 50 and his wife Mary 75 at the time of the interview. He also emphasised that others were ‘further down the road’ than him: I don’t mind saying that by the time we got to the end of the second session I felt like coming out and slashing my wrists because you thought ‘this is good, I’ve got all this to look forward to . . . ’. It was far too early from my point of view, much too early.



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When asked if that meant that the information provided was difficult for him to take on board, he replied, ‘No, I could take it on board- that was half the problem, I took it on board’. Later, he admitted that he found it all ‘scary’, illustrating the sometimes very negative emotional significance information can have. Jack was another participant who was much less inclined to want information about issues that were not yet arising. He spoke of how distressing it was hearing about what happens to people ‘in the last stages’, something he preferred to avoid until faced with it in his own situation. A further complicating aspect of information and its relationship to care and caring relationships concerns the effect that information may be perceived to have on the person cared for. Most of those we interviewed had not shared information from the course with the person they cared for. While carers may feel that information can help their capacity to care, some worried about the effect it may have on those they care for. Colin was asked if he’d looked for information at the time of his wife’s diagnosis. He spoke of problems trying to get the information he needed without upsetting his wife: It’s very difficult to try and protect Mary from it in that I need to find information, I need help, I need to know what we’re going to get but I don’t want to find lots of things dropping through the door mat, people phoning me up, things doing this that is going to make her agitated because if she gets agitated it gets worse.

Whilst Colin’s story illustrates the way in which control over access to information might be seen as an attempt to reduce anxiety, Pauline’s account illustrates how enhancing carers’ access to information can affect the power balance within caring relationships. This was the only example where the person cared for both knew about and resented the fact that their relative was taking the course. Pauline and her husband Francis were both physically disabled and Francis had mental health problems in addition to dementia. Pauline spoke of a difficult marital relationship worsened by Francis’s response to losing control over his affairs and his resentment at the apparent power she exerted as his carer. The benefits Pauline experienced from learning strategies from the course enabled her to feel ‘more equipped’ to care, but in what she described to us as a highly complex situation, her enhanced sense of security in this role appeared to exacerbate Francis’s sense of being undermined by his illness and thus reduced his sense of security. There were other examples where tensions within existing relationships meant that information offered little in terms of feeling better equipped to deal with the highly emotional experiences of caring. Anjali described a marital relationship that had been difficult before dementia and information provided by the course had not helped her to adjust to ‘being a carer’ in this context. This was, in part, a result of having to battle her husband’s family to seek understanding and support. For Kitty, whose struggles to develop a relationship with her husband that worked for both of them were complicated by her experience of having been a care worker, the course offered practical information that did little to help her with the emotionality of the experience of caring for him. Our analysis suggests that information about dementia has a strong emotional impact – fortifying some and disturbing others, especially where caring relationships are already strained or where carers feel poorly prepared and/or unwilling to deal with information about potential scenarios not yet faced by them. In the next section, we examine how the experience of the context within which information is offered can make a big difference to how able carers feel to make the best use of it to enhance care and caring relationships.



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Relational practices in giving and receiving information The context within which carers were learning more about dementia was highly significant in how they experienced its contribution to their capacity to care. The fact that they were participating in an information and support programme was significant for most participants in that it recognised the relational aspects of caring and, in particular, the need for information to be provided with care. For those able to identify a support network, the course offered a useful reminder of the importance of this and ways of invoking it to ensure care for themselves. However, it could not bring such a network into being and one of the disappointments voiced by many participants was that there was not enduring contact between those taking part once the course had ended suggesting that information, alone, was not sufficient to ensure on-going good care. Feeling cared for by both tutors and other carers contributed to their being able to make sense of information, to relate it to their personal situations and to work with it in their caring relationships. Conversely, a sense that some aspects of the course delivery were uncaring and did not recognise the specificities of the caring relationships involved, detracted from potential benefits. Information flowed in different directions within group sessions. Carers brought their own experiential knowledge and shared this amongst themselves as well as receiving ‘expert knowledge’ from course leaders. It was notable that one course leader who had been a carer himself, and was therefore able to combine expert and experiential knowledge, received very positive responses from carers taking part in his sessions. Georgina identified the importance of a dialogic process in enabling information to become active: It was actually talking through . . . the basic understanding of what dementia is and how it affects, and a lot of the stuff, I’d got from books . . . But for me it was actually talking through some of the things I have been doing and just feeling more confident, and the reassurance that, yeah, actually that works.

Lesley linked this to bringing the private experience of care into a more public arena in which such experiences were both shared and understood: When a new subject was discussed, when we had overheads and slides and what have you, bullet points and discussion points, we were given plenty of opportunity to talk. And that is so important because caring is a hugely isolating role. It’s very, very lonely, very lonely. And there are things that you have to do for the person that you care for that are really private and personal things, (short pause, slight strain in voice) and you kind of hold all of that inside, you know, and feeling as I did there, secure and safe, I felt very able to, erm. . . It was therapy. It really was a therapy session.

This sense that the group sessions offered ‘therapeutic’ support appeared to enable carers like Georgina and Lesley to then apply those dialogic processes in the way they related to their mothers. Thus, as we have seen, Georgina recounted new ways of talking with her mother in recognition of her different perception of what was happening. But being ‘freed up’ to talk within these group sessions may also have contributed to carers’ abilities to sustain relationships that were not wholly dependent on talk with the person they cared for: Geoff shaving his father in his residential home, for example.



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In contrast, Colin’s much more difficult encounter with the information offered by the course was exacerbated by his initial resistance to an invitation to take part that addressed him as a ‘carer’ and not a ‘husband’, and by a continuing anger that the ‘completely different sort of love’ between husband and wife was insufficiently recognised in the way information was communicated to a mixed group of carers. He said ‘There wasn’t enough emotion or care for the people that you’re actually dealing with.’ This experience was not typical, but others also indicated that they found it quite distressing to interact with people who were dealing with more difficult issues than they were currently facing. Thus, the diverse experiences of caring relationships that participants brought to the course had different impacts on the relationships amongst carers and hence on the way they experienced and were able to make use of the information being offered and shared in the context of the CrISP programme.

Discussion Most carers of people with dementia enter into the experience of caring with little knowledge or understanding of what dementia is and how it is likely to affect them as individuals and the relationships with the person they are caring for. Our analysis suggests that knowledge about the progression of dementia, when offered in a supportive environment and in ways that gives meaning to everyday experiences, can enable carers to feel better able to care, enhancing their capacity, as well as their senses of achievement and security. Through learning more about dementia and about practical strategies for responding to this, carers can become more confident that they are ‘doing it right’ as well as ‘doing the right thing’. However, our analysis also suggests that we should not understand information simply as a neutral or cognitive resource that can be drawn upon to enable better choices, decision making and improved care. Rather, it is deeply intertwined with emotions and has a strong emotional impact. The meaning information about dementia has for carers is shaped by the nature of the care context and the caring relationships they are in. Whilst new information can be reassuring and help increase confidence and resilience in carers, it can also disrupt and disturb caring relationships by provoking more negative emotional responses ranging from fear and anxiety to anger and despair which can, in some circumstances, further imbalance power relationships and thus be a threat to caring relationships. Our analysis has significance for three bodies of work that offer different but complementary insights into care as a relational and ethical practice. First, as we noted in the introduction, Nolan et al. (2002) have emphasised the importance of focussing on the relational nature of care giving and receiving in dementia. They argued that, whilst ‘personcentred’ care had transformed thinking about people with dementia, ‘it does not fully capture the interdependencies and reciprocities that underpin caring relationships’ (p. 203). Building on these insights, Nolan et al. developed the ‘Senses Framework’ to be used in designing, developing and evaluating services intended to offer an inclusive response that recognises the importance of sustaining relationships between people with dementia and those they are close to (Nolan, Lundh, Grant, & Keady, 2003; Ryan et al., 2008). This acknowledges that older people, family carers and paid carers all need to experience a sense of security, continuity, belonging, purpose, achievement and significance, and that inclusive services need to be able to support the development of these senses amongst all three groups involved in caring relationships. Our analysis draws attention to carers’ needs



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in relation to these senses, and their perception of the importance of at least some of them to the people they care for. We have highlighted the way in which access to information about dementia can enhance these senses in important ways, in particular through enabling a better sense of their achievements as care givers and, at least for some, the significance of what they are doing in this role. Furthermore, our analysis supports the Senses Framework’s emphasis on the importance of ‘security’ or feeling ‘confident in the knowledge and ability to provide good care without detriment to personal well-being’ (Ryan et al., 2008) by showing how new information can enhance such security, while also showing how, in more difficult relationships, as in the case of Pauline and Francis, one person’s enhanced sense of security might undermine another’s. Another body of scholarship to which our analysis contributes considers the nature of care and caring relationships more broadly. Care ethics recognises that interdependence rather than independence characterises the human condition and offers a specifically ethical perspective on ways of supporting care givers, care receivers and the relationship between them. Writing from her perspective both as a moral philosopher and the mother of a cognitively disabled daughter, Eva Kittay writes of the ‘inevitable dependencies and asymmetries that form part of the human condition – those of children, the aging, the ailing – dependencies that often mark the closest human ties’ (1999, p. 14). This relational ontology sensitises us to the need to understand how people negotiate their responsibilities to others as well as to themselves. It names care as necessary for everyone’s survival and wellbeing, as well as being a moral practice that has a particular significance in the context of babyhood, illness and frailty. Offering a political analysis of the significance of care, as well as a way of considering intimate, personal relationships and relationships between paid workers and those receiving care, the ethics of care has been applied in diverse contexts, including caring relationships involving people with dementia (Barnes and Brannelly, 2008; Brannelly, 2006, 2011). Brannelly’s analysis of the practices of social workers and community psychiatric nurses working with people with dementia and their families led her to argue that this ‘negotiated, collaborative version of care provision diffuses power and consolidates action to produce care outcomes that are acceptable’ (2006, p. 209). This analysis draws on Tronto’s (1993) ‘integrity of care’ as requiring attentiveness to the particular context in which the need for care is experienced; accepting responsibility to act in response to identified needs; competence in the delivery of care: ‘Intending to provide good care, even accepting responsibility for it, but then failing to provide good care, means that in the end the need for care is not met’ (p. 133) and responsiveness – recognising how those receiving care respond to this and thus using this to enhance attentiveness. Also drawing on Tronto’s framework, Barnes (2012) has emphasised the epistemological dimension of care which has a particular significance for the role of information within care. ‘Competence in care giving’, she argues, ‘requires drawing on the range of different types of knowledge that will contribute to ensuring that good care is appropriate to the particular personal, social and cultural context of the care receiver’ (Barnes, 2012, p. 171). Besides ‘expert’ or professional knowledge, the experiential knowledge both of those giving and receiving care is crucial. For those receiving care, this knowledge may be expressed, verbally and non-verbally, in the way they respond to care and thus contribute knowledge of what works for them to the process of care. From this perspective, ‘good’ information extends beyond expert and professional knowledge into the experiential realm and its articulation and use of this in caring practices becomes an ethical issue.



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Our analysis offers further support for this argument. The carers interviewed in this study wanted to feel that they were both ‘doing it right’ as well as ‘doing the right thing’. They were understanding their competence as care givers as an ethical issue and most welcomed the information they received because of its role in facilitating their ability to achieve this. But, they were also sensitised to the value of experiential as well as expert knowledge in this respect, and one of the most successful aspects of the programme was the opportunity it provided to share knowledge and generate understanding through conversations amongst carers. The greater understanding of dementia that they gained from ‘professional’ experts and from other carers also enabled them to develop their capacity to be attentive to the needs of those they cared for, and to understand how they were responding to the situation they were in. In this way, we can argue that while more information does not lead straightforwardly to better care, information does have an important contribution to make to ethical practice of care. But as Colin’s experience also demonstrates, there are also ethical issues in the way that information is communicated and a need to understand how carers respond to the information they are being given, as well as to increase understanding of how people with dementia respond to this experience. Our analysis suggests that there is a need to attend to the process of information giving itself as a caring practice – one that can enable carers to experience being cared for, but can also be experienced as uncaring if not done in a way that reflects their particular circumstances. The third body of scholarship to which our analysis contributes is that which examines the ‘logic of care’ (Mol, 2008). This work reflects a similar ontological position to that of care ethics and offers a similar critique of the notion that health and social care needs can be met though the application of choices to a series of primarily rational, information-based options about how support might be provided (the ‘logic of choice’). Whilst the ethics of care is concerned with messy moral dilemmas associated with working out the right thing to do in circumstances that are often complex and difficult, work on the ‘logic of care’ addresses the ‘twists, turns, problems, frictions and complications’ (Mol, 2008, p. 87) associated with a working out of care in practice. Unlike the logic of choice which is concerned with ‘individuals who wish to be free’, the individuals who figure in the logic of care would ‘die if they were left alone’ because they ‘owe their very ability to act to others’ (Mol, 2008, p. 72). Thus, as with the ethics of care, relationships, not individuals, provide the starting point for examining care practices. The logic of care refuses the artificial separation of ‘facts’ and ‘values’ and points to the limitations of rationalist discourse in the logic of choice. Mol reflects upon the process of information and decision making in the context of a doctor–patient consultation: In the linear unfolding of a consultation, a professional is supposed to give information, after which a patient can assess his or her values and come to a decision . . . However, care practices tend not to be linear at all. Facts do not precede decisions and activities, but depend on what is hoped for and what can be done. Deciding to do something is rarely enough to actively achieve it . . . caring is a question of ‘doctoring’: of tinkering with bodies, technologies and knowledgeand with people, too. (Mol, 2008, p14)

Our analysis provided numerous examples of the ways in which carers combined different forms of knowledge and experience to make what Georgina described as a ‘Heath Robinson Fix’.



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Our analysis also lends support for Mol’s calls to ‘watch out’ for the ways in which our means can ‘mess up’ our ‘ends’ (2008, p. 56). We have shown how information, far from being a simple means to the ends of good care, may sometimes confound those ends in unexpected ways, for example by exacerbating the lack of power that care receivers may experience in relation to their care givers. Linked to this is the idea that information is not a panacea for uncertainty. Again, Mol has argued that, in the logic of choice, new ‘facts’ contribute directly to the removal of uncertainty. In contrast, ‘in the logic of care, uncertainty is chronic, and additional arguments cannot hope to alter this. You do what you can, you try and try again’ (p. 90). In other words, more information would not necessarily lead to greater certainty or clarity but it might, if understood in the more relational, contextual and situated logic of care, help people live more happily with that uncertainty. The responses of carers in this study demonstrated that individual capacities to live with uncertainty varied and that it was those carers for whom new information gave confidence to ‘experiment’ with care who gained most from this programme.

Conclusion Information about dementia and its progress can enhance the capacity of carers to care for people with dementia, and this can add both to their confidence and security in this role and to the quality of the relationship they have with the person they care for. It can enhance a capacity to live with uncertainty and support the type of attentive and responsive interactions that can enable difficult decisions to be made both when they are needed and which offer the best possible outcome for both the carer and the person they care for. But these are not inevitable outcomes and information can also generate difficult emotional responses and unsettle relationships, especially where there is evidence of current or former conflict. If positive impacts are to be maximised, the way in which information is not only communicated but also exchanged and generated, need to be attentive to the diverse contexts for and experiences of caring relationships. Carers need to feel cared for in these settings. When this works, the exploratory process of dialogue amongst carers can help develop capacity in relation to the dialogic process of care giving. But, if this is absent, the information and knowledge to which carers are exposed can feel overwhelming and its potential to enable better care can be compromised.

Acknowledgements This article draws on an independent evaluation commissioned by the Alzheimer’s Society and completed in February 2013.

References Alzheimer’s Society. (2010). Information needs of people with dementia and carers. London, UK: Alzheimer’s Society. Alzheimer’s Society. (2012). Support services: Carer Information and Support Programme (CrISP). Service Specification, London, UK: Alzheimer’s Society. Arksey, H., Jackson, K., Crouchert, K., Weatherley, H., Golder, S., Hare, P., . . . Baldwin, S. (2004). Review of respite services and short term breaks for carers for people with dementia. London, UK: National Co-ordinating Centre for NHS Service Delivery and Organisation.



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Barnes, M. (1997). Care, communities and citizens. Harlow, UK: Longman. Barnes, M. (2012). Care in everyday life: An ethic of care in practice. Bristol, UK: Policy Press. Barnes, M., & Brannelly, P. M. (2008). Achieving care and social justice for people with dementia. Nursing Ethics, 15(3), 399–410. Barnes, M., Henwood, F., Smith, N., & Waller, D. (2013). External evaluation of the Alzheimer’s Society Carer Information and Support Programme, School of Applied Social Science, University of Brighton. Retrieved from http://www.brighton.ac.uk/sass/research/publications/ ?PageId¼800 Boylstein, C., & Hayes, J. (2012). Reconstructing marital closeness while caring for a spouse with Alzheimer’s. Journal of Family Issues, 33(5), 584–612. Brannelly, P. (2006). Negotiating ethics in dementia care. An analysis of an ethic of care in practice. Dementia, 5(2), 197–212. Brannelly, P. (2011). That others matter: The moral achievement – care ethics and citizenship in practice with people with dementia. Ethics and Social Welfare, 5(2), 210–216. Brodaty, H., Thomson, C., & Fine, M. (2005). Why caregivers of people with dementia and memory loss use services. International Journal of Geriatric Psychiatry, 20(6), 537–546. Cahill, S., Gibb, M., Bruce, I., Headon, M., & Drury, M. (2008). ‘I was worried coming in because I don’t really know why it was arranged’ The subjective experience of new patients and their primary caregivers attending a memory clinic. Dementia, 7(2), 175–189. Department of Health. (2009). Living well with dementia: A national dementia strategy. London, UK: Department of Health. Department of Health. (2010). Healthy lives, healthy people: Our strategy for public health in England. London, UK: Department of Health. Department of Health. (2012a). Caring for our future: reforming care and support. London, UK: Department of Health. Department of Health. (2012b). The power of information: Putting us all in control of the health and care information we need. London, UK: Department of Health. Downs, M., Clibbens, R., Rae, C., Cook, A., & Woods, R. (2002). What do general practitioners tell people with dementia and their families about their condition? Dementia, 1(1), 47–58. Henwood, F., Harris, R., & Spoel, P. (2011). Informing health? Negotiating the logics of choice and care in everyday practices of ‘‘healthy Living’’. Social Science and Medicine, 72(12), 2026–2032. Kittay, E. F. (1999). Love’s labor. Essays on women, equality and dependency. London, UK: Routledge. La Fontaine, J., & Oyebode, J. R. (2013). Family relationships and dementia: A synthesis of qualitative research including the person with dementia. Ageing and Society. doi:10.1017/ S0144686X13000056. Miller, R. L. (2000). Researching life stories and family histories. London, UK: Sage. Mol, A. (2008). The logic of care: Health and the problem of patient choice. Abingdon, UK: Routledge. Nolan, M., Lundh, U., Grant, G., & Keady, J. (Eds). (2003). Partnerships in family care: Understanding the caregiver career. Maidenhead, UK: Open University Press. Nolan, M., Ryan, T., Enderby, P., & Reid, D. (2002). Towards a more inclusive vision of dementia care practice and research. Dementia, 1(2), 193–211. Ryan, T., Nolan, M., Reid, D., & Enderby, P. (2008). Using the senses framework to achieve relationship-centred dementia care services: A case example. Dementia, 7(1), 71–93. Tronto, J. (1993). Moral boundaries. A political argument for an ethic of care. London, UK: Routledge.

Marian Barnes is Visiting Professor of Social Policy in the School of Applied Social Science at the University of Brighton. She has researched and written extensively on care and care ethics.



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Flis Henwood is Professor of Social Informatics in the School of Applied Social Science at the University of Brighton. Her current research explores the relationship between information, technology and care in a range of health and social care contexts. Naomi Smith is Research Fellow in the School of Applied Social Science at the University of Brighton. Her primary research focus is dementia with particular interest in the maintenance of identity and personhood and in working creatively with people with dementia through dance.


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