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Relationship Difficulties in Dementia Care: A discursive analysis of two women’s accounts Liz Forbat Dementia 2003; 2; 67 DOI: 10.1177/1471301203002001995 The online version of this article can be found at: http://dem.sagepub.com/cgi/content/abstract/2/1/67

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     

Relationship difficulties in dementia care A discursive analysis of two women’s accounts L I Z F O R B AT The Open University

de men tia dementia

©    London, Thousand Oaks,  and New Delhi  () – [-():; –;]

This article reports on a small-scale study where people giving and receiving care were invited to talk about their relationship. It draws on one care dyad of a woman (who has a diagnosis of dementia) and her daughter (who has provided care for her mother). A short series of interviews was conducted with both women, focusing on their biographies and current relationship. This article reports the account given by the mother and how this intersects with the account given by the daughter. The discursive analysis presented centralizes a concern with attending to the accounts of people with dementia. Analysis of the talk of people with dementia can make a valuable contribution to understanding care relationships. Such analysis has the potential for shedding light on difficulties in care relationships. The article ends by outlining some salient issues for professionals and family members involved in dementia care.

Abstract

Keywords

difficulties; discourse; family care; policy

Introduction This article stems from a small-scale innovative research project on care relationships. It is located in, but moves on from, the established care literature by applying a discursive analysis to accounts of care to illuminate the (re)presentation of relational difficulties. The empirical work of the study comprised interviews with both the carer and the caree in six care dyads. Interviews were biographical and focused on each person’s past and current experiences of care and their relationship with their care partner. Dyads varied as to the need for care (including a diagnosis of schizophrenia, recovery from stroke, visual difficulties, cancer and two instances of dementia). The nature of the relationship also varied, including three adult children caring for their parents, one sibling dyad, one friendship dyad and one spouse dyad.



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 () The study began as an investigation of ‘abuse’ in domestic care relationships, but it developed into an exploration of how carers and carees are able to articulate accounts of their relationships. The change in focus came about through a developing awareness of and interest in the power of language in constructing and communicating accounts of care and relational difficulties. The implications of this approach to researching care relationships of people with dementia are explored below by drawing on discursive psychology. In the first section of this article I outline a number of features of care research that have drawn on theories of language to elucidate relationships in dementia. In the second section I describe in more detail the discursive analysis and methodology of the research that this article is based on. The account of a woman with dementia is then introduced alongside an account by her care-giving daughter. In the final section I indicate the ways in which discourse analysis has implications and relevance for practitioners, policy makers and family members in enhancing quality of life.

Care research Traditionally, care research has focused on eliciting the perspective of either carer or caree; but not both as in this study. This has resulted in (re)producing a dichotomy between carers and carees (and reifying differences between the two groups) as well as creating two bodies of literature – one pertaining to care-givers, one pertaining to care-receivers. These two academic traditions are exemplified in the feminist-based carers movement that gives emphasis to developing insight into the gendered notion of family-based care (for example, Lewis & Meredith, 1988; Finch, 1989; Twigg & Atkin, 1994); and writers from user group movements focusing on the perspective of the cared-for person (for example, Morris, 1995). Whereas one tradition focuses on the nature of the caring role, depicting the tasks and strains of care-giving (Farran, Keane Hagerty, Salloway, Kupferer & Wilken, 1991; Coyne, Reichman, & Berbig, 1993; Keady, 1996), the other tradition focuses on disability issues and the user perspective (Lyman, 1998). Specific implications for dementia care arise from this polarization. In particular, the maintenance of this duality seems to subvert the radical humanism that underpinned much of Kitwood’s (1997) work. Maintaining a polarity between carer and cared-for in research also fails to reflect the more complex position of professionals who are frequently involved in getting to grips with both sides of the relationship. Indeed, the relationship seems to be missing from much theorizing around informal dementia care (although see Henderson and Forbat’s (2002) research where relationships are centralized in the caregiving process). 



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   :                                   Recent literature in the field of dementia care has reported on the contact points between theoretical frameworks which look at the experiences of the carer and the person with dementia (for example, Bamford & Bruce, 2000). Involving people with dementia in social research is not, however, a straightforward process. People with dementia (alongside a range of other stigmatized groups including people with cognitive deficits) have traditionally been excluded from participating in research. Such exclusion has been justified on a number of grounds – for example, ethics regarding the ability to give informed consent (for example, Arscott, Dagenan, & Sterfert Krose, 1998; but also see Reid, Ryan, & Enderby, 2001 for a discussion of consent and research in dementia care). McColgan, Valentine, & Downs (2000, p. 99) note that ‘People with dementia have been a silent presence. If we hear their voice it is predominantly through others’. I was keen that the research on which this article is based should include previously marginalized voices, including people in need of care, and thus encompassing people with a diagnosis of dementia. This article, and the research from which it stems, calls for research, social policy and professional practice to take seriously the accounts of people with dementia.

Dementia, discourse and taking people seriously A burgeoning number of writers have begun the endeavour to take accounts of people with dementia seriously. This has included, notably, Kitwood (1997) in health and social care. Following on from Kitwood’s work, Woods (1999) emphasizes the essential humanism to dementia care and the need to value service users in the backdrop of our ‘hyper-cognitive’ (1999, p. 37) western culture. Barnett (2000) also centralizes the perspective of the person with dementia, and this forms the driving motif of her account of designing and delivering residential care. In North America, Friss Feinberg (2000) combines accounts of both carer and person with dementia to explore and ‘respect’ both voices. Killick (1999) presents a range of poetry gained from residents in a nursing home. He uses this to explore the plethora of ways that people with dementia find to express emotions and meanings. This focus on the subjective dimension of dementia has been explored by other authors – for example, Sabat (2001) and Sabat and Harré (1992). Sabat (2001) in particular dramatically moves from setting up the dominant medical model of the dis-ease to focus on the person with dementia: their self, their identity. Similarly, Proctor (2001) investigated the experiences of this disempowered group by exploring the accounts of people with dementia. Proctor 



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 () reports an approach (the voice relational method) that seeks to ‘ensure silenced and subjugated voices were heard’ (2001, p. 366). The analysis is then focused on to the content of the story, talk about themselves, talk about relationships and representations of a broader societal voice (for example, about power relations in health consultations). She ends her article by reflecting on how this process of taking people’s talk seriously, and making it the focus of analysis, may facilitate the process of ‘rementing’. Harding and Palfrey (1997) also work to challenge traditional (medical) models of what dementia is and how it can be investigated. For example, they challenge the normative notion that it is the cared-for person that is confused by asserting that it is the professionals who deserve labelling as ‘confused’. Harding and Palfrey (1997, p. 70) posit the importance of the talk of people with dementia, noting: ‘ “Linguistic diversity” becomes a threat to conventional ideas about the nature of being fully human, and those who express themselves in a “strange” manner – in the context of day-to-day living – are candidates for the category of “diseased”/“deranged”.’ The features that constitute such strange linguistic practices are of course socially, historically and culturally situated. The authors note that research has not sought to investigate ‘what so-called “dements” talk about’ (Harding & Palfrey, 1997, p. 58) – highlighting research deficits in taking such talk seriously. In a similar vein, psychotherapeutic work with people with learning difficulties indicates that people have a range of ways of communicating which can be taken seriously. Sinason (1992) develops a number of case studies where people who traditionally have been regarded as unable to communicate successfully are recognized as competent and able to convey their feelings, desires and stories. Indeed, one chapter is devoted to the case study of a man with Alzheimer’s disease, and the insights that Sinason, as his therapist, was able to develop through their interactions to enable him to better understand the process occurring to him.

Applying discourse analysis Common-sense understandings of language suggest that talk reflects a reality. Talk acts as a medium for communicating truths and understandings. Discourse analysis, however, takes a different approach and, at its most basic, suggests that language is used actively to construct versions of the world. With its roots in social construction, a discursive approach highlights a critical stance to ‘truths’ and ‘realities’, and moves towards an understanding of multiplicity in representation (for example, Burr, 1995; Gergen, 1999). It emphasizes the cultural and social specificity to language and knowledge. 



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   :                                   Much discursive analysis is concerned with looking at the function, construction and variation in accounts (Potter & Wetherell, 1987). Discursive psychology takes the talk itself to be the item of study rather than trying to get at underlying beliefs or attitudes (Edwards & Potter, 1992); a central tenet is understanding talk as action. Talk can thus be understood as constructing understandings, identities, relationships and even dementia itself. Discourse analysis has begun to appear in the dementia literature, and I build on this in the present article. Shakespeare (1998), for example, has reported her study of the talk of people with dementia. She noted that the principles of conversation analysis can be applied to investigate the talk of people with dementia, their caregivers and the interviewer, to illuminate confused speech. What is implicit in her work is that understandings of how identities are constructed can be enhanced by attending to the speech of people with dementia. Such research has shown, then, that it is fruitful to apply a discursive analysis to the talk of people with dementia. Sabat and Harré’s (1992) discursive study of talk from people with Alzheimer’s disease indicated that it is possible to identify the maintenance of personhood and identity through the use of personal pronouns (I, me, myself and so on). Accounts of memory have also been discursively investigated to illuminate the way people with dementia are able to manage identity construction, and contain interactional difficulties arising from memory difficulties (Saunders, 1998). The idea that talk can be analysed to show the creation and maintenance of identities holds important implications for the way that health and social care practitioners, as well as family carers, interact with people with diagnoses of dementia. Discourse analysis is thus compatible with Kitwood’s work, and subsequent literature, which has prioritized the primacy of maintaining personhood. In the following illustration of one care dyad, consisting of Mavis (who has a diagnosis of dementia) and her daughter Barbara, a discursive analysis is drawn on to theorize the talk of both participants. Analysis focuses on their identity constructions and the articulation of (seemingly longstanding) relational difficulties. In addition to the discursive approaches outlined briefly above (that is, Potter & Wetherell, 1987 and Edwards & Potter, 1992), I draw on positioning theory (van Langenhove & Harré, 1999). Van Langenhove and Harré theorize the way talk opens up discursive spaces where identities can be created and then taken on or warded off. People may position themselves or others in talk – for example, as a carer or a daughter, as someone with dementia or a forgetful person. Wetherell (1998) has stressed a need to see the process of positioning in talk as an active rather than a passive task; 



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 () there is then an assumption of agency in how identities are fostered within talk. Another key paper that has informed the analysis that follows is the work of Scott and Lyman (1968). Their work looks at the application of ‘excuses’ and ‘justifications’ in talk. They proposed the terms as socially approved vocabularies that serve to neutralize the description of an act or its consequences. Scott and Lyman suggest that an excuse is applied when there is an admission that an act was bad, and it is used to indicate that the act was caused by an external agent. Excuses demonstrate recognition of questionable behaviour, but try to relieve responsibility. The use of a justification is proposed to indicate no denial of responsibility, with the caveat that the actions are reasoned to be ‘good’ or ‘acceptable’. In accounts of relational difficulties these strategies are powerful mechanisms that can be used to perform accounting work on the relationship. For reasons of space it is not possible to review in great detail the intricacies of these analytic methods; rather, I wish to focus on the discursive manoeuvres indicated in both women’s speech to illustrate the analytic potential of this approach. The references indicated above are frequently quoted in the discursive literature and provide solid starting points for readers who are interested in pursuing this area further.

Introducing Mavis and Barbara Mavis, at the time of the interviews, was living in a residential nursing home about 4 miles from her daughter’s home. Both Barbara and Mavis live in a town just north of London. Mavis is 78 years old and Barbara is 52; both women are white-British and of working-class background. Mavis had married in her 20s and her husband died many years before she developed dementia. They had seven children together, but Barbara is the only child who has been involved in caring for her mother on a day-to-day basis. Barbara has one adult son who lives with her; he has taken no active role in caring for Mavis. Mavis has memory difficulties that are manifest in a number of ways. Before moving to residential care, she would get lost on walks around the estate where she lived, becoming distressed when she couldn’t find her way home. Memory difficulties impacted on her emotional well-being, causing her to become distressed when she mislaid her keys or purse. Often Mavis would believe that the lost items had been ‘stolen’, and would thus become worried that her home was unsafe. This in particular resulted in much stress for Barbara, as Mavis would call her out every day to make her home ‘secure’/locate the lost items. Barbara’s talk indicated no understanding that her mother’s behaviours were symptomatic of dementia; 



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   :                                   indeed, Barbara interpreted Mavis’ actions as often being conscious ploys to gain ‘attention’. Throughout the interviews Mavis made leaps of time frame from the present day to her past, and talked about people who had long since died in the present tense. Mavis’ long-term memory seemed to be intact, and she would speak for long periods about her own childhood and early married life. According to nursing staff and Barbara, Mavis’ move to residential care had unsettled her. I met with both women to hear about their past relationship together and their perspective on their current care relationship. In the remainder of this article I tie together the two narratives of their relationship, commenting on how the women construct themselves, their relationship and the difficulties they encounter. Their accounts suggest longstanding tensions which, although not caused by dementia, do seem to be exacerbated by it. The relational difficulties evident in the extracts below can be seen as a function of malignancy that has a historical basis in their earlier relationship. Taking seriously accounts from both sides of the story enables a critical reflection on how accounts of problems are constructed and what functions these different accounts perform. Mavis positioned herself within the discourse of poverty, to be a ‘survivor’ struggling against life’s adversities. She also drew explicitly on discourses of gender roles, positioning herself as a woman; when bringing up her family she positions herself to be a powerful figure in the family. Although I asked her to talk about her daughter, she often didn’t take these prompts up. Her limited talk about her daughter has made it difficult to ascertain any specific positioning of Barbara in the present day. Barbara clearly positioned herself to be a carer, and her mother as a caree – both in the present day but also stretching back to Barbara’s childhood. A moral dimension is also added as she sees herself to be a good carer and her mother as a bad caree/patient. Barbara indicates that she is lacking agency to alter their relationship and thus reflexively positions herself as powerless, and her mother as powerful.

Family history The most obvious starting point for these two women is with their family history, because there are inevitable overlaps in their experiences. Physical punishment is a theme in both of their narratives, with the first reference dating back to Mavis’ own childhood. Mavis tells me of her father: ‘Oh sometimes, my dad didn’t hit you hard but, if he did hit you, you knew it was for something’. His physical violence is explained and justified as being appropriate in that he would respond in such a way only 



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 () if sufficiently provoked. Hitting is seen (and learnt) to be an acceptable way to deal with family difficulties. Physical punishment is also introduced as a theme in Mavis’ parenting style with her own children. She tells me that she used physical force: Mavis: Interviewer: Mavis: Interviewer: Mavis:

I wouldn’t ill-treat them Right Er . . . box their ears now and again You would or you wouldn’t? I would, but I- I didn’t make a habit of it because I didn’t believe in that, you know I think you might do them more damage than, you know

She frames her talk on physically punishing the children by indicating that they were not ill-treated. This serves to moderate the following talk on what she would do, and is similar in nature to the justification noted above for her father’s violence. Her vague reference to the frequency of her boxing their ears ‘now and again’ acts as a rhetorical strategy, ducking their pertinent question of whether this was a routine punishment. She completes this section of talk by adding in a moral dimension, and provides reasoning for not making a ‘habit’ of it. Mavis asserts agency in her narrative for the control of her children, and she positions herself as family discipliner: Interviewer: Mavis:

Uh huh, so if the kids were being naughty would it be you or that did the telling off? Me

Hence it would have been Mavis reprimanding Barbara for any misdemeanour in the family – an important factor when considering current relational problems between the two women. Barbara also indicated that there was physical violence in the family and clearly signalled that her mother was the main seat of discipline. It was clear from Barbara’s biography that the personal positioning of Mavis as a powerful and bad mother was not restricted to their most recent interactions. The following extract exemplifies these positions. Barbara tells me: ‘Oh yeah! She could be quite violent! She’d throw knives, forks, saucepans, you name it she threw it.’ The above extract is much more graphic than her mother’s description of punishments for Barbara and her siblings, a feature that is representative of the rest of her utterances on punishment. The vividness in Barbara’s descriptions is central in how she constructs her account. The function of vivid descriptions is flagged up by Edwards and Potter (1992) as being a strong rhetorical device that increases the ‘truth’ status of the account. It is 



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   :                                   perhaps particularly important for speakers to construct a believable and truthful account when talking of such difficulties, so that the problems are not interpreted as a fabricated slur on another’s character. I ask Barbara specifically to comment on their relationship in the past: Interviewer: Barbara: Interviewer: Barbara:

Uh huh. Do you think you got on well with your mother when you were a kid? Not really . . . no. She didn’t have no time for any of us no. Not really not really, no. I can say that honestly. But . . . not for any of you? Maybe the boys, it was always HER boys it was always so good, she never said about my sister and I it was always about HER boys, ‘oh the boys need this and the boys need that’ and it was never, you know yourself and Maureen, never.

In this account she is clear that she and her mother were never close (with four direct negative assertions), but that her brothers were thought of more kindly. By contrast, however, Mavis does not represent the past as being so clearly negative. She talks of looking after all the family, putting meals on the table and so on. Indeed, often she talks about the children all together, only occasionally singling them out to talk about them individually. In the following extract she tells me about trying to make ends meet in the family: Mavis: Interviewer: Mavis: Interviewer: Mavis:

Yeah, in London, where temptation was rife really wasn’t it? But they weren’t too bad I know I’ve seen kids a lot worse right but they never had new clothes like other kids did. Used to go the odd jumble sale, I used to hate going but you do yeah and then I could sew I used to make trousers . . . cut the bottoms of skirts and make a pair of trousers , my Robert said to me “why do I have to have this rotten colour trousers?” I said “it’s a new style” he said “no it ain’t it looks like Robert’s trousers”

This extract begins with scene setting, and she locates the family in London in times of hardship. All the children are considered together here (2), and summed up to be all right. Again in lines 4 and 5 all the children are treated equally as receiving clothes from jumble sales. It is only in line 8 that one of the children is given a voice apart from the others in his complaint of the clothing he is offered. In this extract the speech is confused and it is not clear where Robert comes into the story; however, this is not the tale of the boys being prioritized over the girls in the family. 



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 () At several points in the interviews I prompted Mavis to talk specifically about Barbara, and it became clear that there was a strong theme of a troubled identity for her daughter: Interviewer: Mavis: Interviewer: Mavis: Interviewer: Mavis:

Right, how do you get on with Barbara? Oh all right, she was a bit of a madam, you know she Was she? Yeah What was she like? She was bossy!

This is a clear challenge to Barbara’s identity, as she is described as bossy. Analysis of this extract is somewhat difficult given the tense change between my question and her response and it remains unclear as to whether I am being told about their current relationship, or about characteristics of her daughter from years ago. However, in the second interview she indicates that Barbara is ‘bossy’ in the current day: Interviewer: And how ’bout nowadays, how do you get on with Barbara? Mavis: Barbara, well she’s inclined to be a bit bossy, you know she got children of her own.

Thus while it is not clear from the mother’s account that Mavis prioritized the boys over the girls, it is clear that she expresses negative affect toward Barbara. Given Barbara’s strong ‘carer’ positioning in her biography, I was interested to hear her mother’s take on this. The following extract comes from my prompt to talk about Barbara’s role in the family, rather than a spontaneous account from Mavis: Interviewer: Mavis: Interviewer: Mavis:

. . . and what about Barbara who you’ve just mentioned? well she helped with the little baby Did she? What would she do with the baby? Well she took ’em out, put them in the pram and took them up the road and went up and got a loaf and all sorts I think

Barbara is positioned by her mother as a helper within the family. The extract comes from a dialogic exchange about how each of the children helped out at home, and in the series of interviews Barbara is presented as the only child who helped in this way. The boys are described elsewhere as helping in more instrumental ways in collecting firewood and so on. However, even this description of Barbara’s help and fleeting positive positioning is uncertain, as she ends with a weak disclaimer ‘I think’. Thus Barbara and Mavis paint rather different pictures of their family history and Barbara’s care for her siblings. There is little indication in her 



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   :                                   mother’s talk of Barbara being a carer. Indeed Mavis’ strongest statement is perhaps the following: Interviewer: Mavis: Interviewer: Mavis:

did any of the kids help out with any of the other kids? W- when they felt inclined Yeah? Was that often? Wasn’t very often no. And it was alw- they lacked so much

This can be read as an explicit contradiction to the carer position that Barbara sets up for herself. To summarize, Mavis does not position her children to have been carers, and comments on Barbara only to tell me that she was ‘bossy’. Barbara has much more to say about her mother, with the result of more subject positions being evident in her talk. Indeed the position of ‘powerful bad mother’ is pervasive in her narrative to the extent that it leaves no room for positive identity work in the past or present. By contrast, Barbara reflexively positions herself as being a dutiful (good) daughter; caring for her mother in the face of adversity: ‘But I did what I could for my mum . . . in the best way possible’.

Care Care was much more of a constant theme in the interview with Barbara than with Mavis. Indeed it was difficult to ascertain Mavis’ understanding of who cares for her, as the following extract illustrates: Interviewer: Mavis: Interviewer: Mavis: Interviewer: Mavis: Interviewer: Mavis: Interviewer: Mavis: Interviewer: Mavis:

more recently since you moved to has anyone been looking after you? has anyone been looking after you? Me? Hm Yeah Yeah? Yeah Who’s been looking after you? God knows! God knows! The devil himself I think

This form of response was typical of her talk on care, which added little to my understanding of her construction of her current situation. Importantly, though, it does seem to imply that she does not have a clear understanding that she is being ‘looked after’, which in turn indicates a different awareness of her situation than her daughter. 



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 () I prompted Mavis to talk about care in the past to allow some comparison with Barbara’s talk (since the daughter had told me that her mother had needed care throughout her life). However, when talking about family care in general, there seemed to be a tendency to suggest that there hadn’t been any care-giving: Interviewer: Mavis: Interviewer: Mavis:

Yeah, I was wondering, do you think that you looked after anyone in the family more than anyone else? No, I don’t think so, LESS probably Oh! who do you think needed less care? We:ll I wasn’t there very much having a family of my own and I used to go back home look after them, then go back to work.

Rather than providing an account of who received less care, Mavis moves on to explain why none of them got much care. The reason for this is seen to lie with her work commitments; thus not as a consequence of any personal positioning of not wanting to take care of the family. This could also be interpreted as a rejection of the identity ‘carer’, choosing to tell me about her work taking priority over family care-giving. She implies that she looked after her family less than one might expect, and in this respect her last utterance can be interpreted as an explanation for this admission. There is some recognition, then, that caring ‘less’ in some way contravenes social expectations for behaviour in families. There is no indication in Mavis’ interviews that she perceived (or wanted to represent) herself as being in receipt of care in the past or currently. Mavis does, however, construct some of her talk by drawing down from repertoires of care. She told me of her concern for her children’s wellbeing, and how she prioritized her family over cigarettes (which formed a large part of her narrative). In terms of care, Mavis directly challenges her daughter’s primary position of family carer in the following extract: Interviewer: Mavis:

Did any of the kids help look after the kids? No, didn’t need to cause they all went out with one another so.

Mavis at no point positions Barbara as a carer (of herself or of anyone else); indeed, as the first quotation in this section illustrates, there is no evidence of her even drawing on disability/care discourses. Much of Barbara’s talk does, however, draw explicitly from a disability/care discourse and forms the basis for her identity construction as both an adult and child. This carer identity is thus effectively denied by her mother. This tension between the identities they construct for themselves and those they construct for the other person might be taken to indicate one source of tension between the two women. What is striking in the interviews with Barbara is her apparent lack of 



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   :                                   concern about how she represents her mother. Barbara doesn’t construct her challenges to her mother’s identity as problematic (for example, her frequent challenges to maintaining full personhood status). There is no inkling in Barbara’s talk that her challenges, laughter and disregard (which litter her account of their relationship) have any impact on her mother. Through these accounts it is possible to identify a mutual lack of positive regard, and both mother and daughter appear to be invalidated. The consequence of this negativity is perhaps much clearer to see in Barbara’s account, as she was more expressive at interview, and because she was able to construct clear markers differentiating between past and present. Ascertaining the impact of this negativity on Mavis is difficult as she did not reflect much on her present situation, or offer insights into how she experiences such challenges to her identity. Barbara’s response seems to be one of challenge to her mother’s confused presentation, rather than trying to understand or accept her perceptions. In the interviews she seemed not to distinguish the meaning of her mother’s behaviours as consequences of dementia rather than intentional disruption. Their family history, and Barbara’s report of longstanding difficulties, would seem to explicate this bias in her responses to her mother. Her exchanges with Mavis seem to encroach on the categories of ‘malignant’ care suggested by Makin (1995) of ‘invalidation’. This is described as being an interaction style whereby there is a failure to acknowledge the subjective reality of the other person’s experience, especially with regard to their feelings. The following extract exemplifies Barbara’s challenge to Mavis’ understanding of ‘losing’ her purse: Interviewer: Barbara: Interviewer: Barbara:

A lot of people tell me that when they feel frustrated that that leads on to feeling anganger angry it does, yep absolutely.. I know nobody’s robbed her nobody’s got in . . . nobody’s broken any windows I said ‘well show me where they’ve got in show me where they’ve broken a window’, and come in through the door, I said ‘they cannot come in through a locked door its physically impossible, unless you’re a spook which you don’t believe in anyway, there’s no such thing’ I said ‘well show me where they’ve broken the window’ ‘oh you don’t know you wasn’t here’

Confirmation of this lack of insight into her mother’s illness also seems evident in Barbara’s accounts of mockery within the family – for example, an episode where her son laughs at Mavis which serves to invalidate and undermine her reality. 



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 ()

One event, two stories: an illustration of tensions In this section I present both women’s separate accounts of one event. This provides an opportunity to unpick some of the differing ways that the same event is articulated by the women, indicating the different functions this performs for the speakers. The event discussed relates to their experiences of dealing with the rent man. Mavis’ account began thus: Interviewer: Mavis: Interviewer: Mavis:

Dear! And would you have the rent man knocking on the door? Oh yes, he’d be there Monday morning and what would happen for you Monday morning? Oh! I’ll tell him say ‘sorry, my husband’s had a short week’ ’course they had a lot of short time in building trade.

She asserts definite agency here for her role in dealing with the rent man. The indication of clarity in recall is attributed to mentioning which day of the week it was. The expression that the rent man came on Monday mornings increases the rhetorical facticity of what follows. Indeed the reported speech that occurs next adds to this truthfulness, and suggests an exact recall of the conversation that would have been typical on this Monday morning visit. The extract below is taken from Barbara’s account of her childhood, and it clearly shows that it was she who dealt with the rent man. (I) . . . used to go to the door ‘I can’t pay you today, me mum will pay you next week’ She always sent me to the door to tell the rent man ‘I’ll have to pay you double next week cause me mum’s not in’ when she’s hiding behind the door. She used to say ‘go and tell the rent man I’ll pay him double next week’ and the milk and the gas man. I used to hate doing that. But it was always me sent to the door to say ‘I’ll pay you double next week’ oh used to mark it in the book, come back next week ‘oh me mum can’t pay you’.

The personal pronoun which begins this account leaves the listener in no doubt as to who it was that interacted with the rent man. Indeed, her mother is active only in delegating this task to Barbara. The reported speech serves to construct this as a true and factual recall of the event. Barbara builds in a temporal dimension in her account, mentioning twice that she always had to do this. The interaction is also broadened out to other people collecting their owed moneys, with Barbara positioning herself in the same role of having to put them off until the next week too. While it is not possible to ascertain what actually happened when the rent man came round, their diverse accounts give us much to contemplate. There is no indication from either of them that the other had some involvement in the face-to-face situation. This can be used as an illustrative example of difficulties in their relationship. Perhaps relational tensions and 



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   :                                   conflict are inevitable where an event is recalled and represented in such diverse manners. It is unfortunate that there were not more points at which their stories touch each other, so that this hypothesis could be investigated further. However, perhaps the fact that there is little overlap in the subject of their talk is in itself indicative of their relational difficulties.

Conclusions Eliciting talk about people’s pasts allows room for the construction of a narrative that explains the current relationship. By focusing on constructions of the past, current difficulties may be accounted for, opening avenues for exploring ways to deal with current relational tensions. This approach may have particular utility when used with people who have a long-shared history – for example, in intergenerational care dyads. The two histories can be seen as interacting story lines rather than as separate narratives. Professionals may be able to help people make sense of and articulate current difficulties by this focus on the past. Understanding the potential for conflict in a relationship can be facilitated by an awareness of the way different identities can be taken up or resisted as a result of differing repertoires or discourses. Where conflict or difficulties are clearly constructed, this sensitivity to language may provide a way of broaching and dealing with tensions, working through them to ensure service users are offered appropriate services. It is pertinent to note, however, that constructions of difficulties are frequently not explicit, and the full negative force of an utterance may be apparent only when looking at the speaker’s dialogue at length. The power of discursive manoeuvres and ideological constructs may thus only become clear long after the interview, when analysing transcripts or reflecting on the interaction. Analysis of facticity and authenticity (and other rhetorical devices) suggests that there is room for professionals to consider the implications of such constructs in talk. Working up authenticity in talk has implications for the way professionals hear and take on board the accounts of carers and carees. For example, a convincing account of difficulties may elicit support and access to services, whereas an equally convincing account that the relationship does not even contain care (for example, Mavis’) can shut down such support. A result of this may be an escalation of problems and perhaps lead to a breakdown in the relationship, or in the provision of care. It is my proposition that practitioners can develop their understandings of care relationships through a discursive approach. In addition, it may be fruitful to use discursive understandings to work with families, offering alternative subject positions or repertoires, which when dynamically drawn 



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 () on in the context of that relationship may result in differing, more helpful, constructions of themselves and the other person. Barbara, for example, could be helped to reposition her mother as having memory troubles (rather than continuing to use the current position of ‘troublesome’). Alternatively, the repertoire of normative family care could be replaced with one of normative professional care, thereby focusing responsibility on healthcare professionals rather than ‘dutiful daughters’. Unlike much research that segregates carer from caree, professionals frequently have the task of bridging the two perspectives. It is this ‘caught in the middle’ perspective that is reflected in the methodology of this research, exploring both sides to a dementia care relationship. Understanding both sides to the caring relationship, rather than just one perspective on it, has the potential to inform policy developments. Friss Feinberg (2000), for example, reports on the power of carers and service users in guiding service provision and policy. The perspectives of both carer and caree in UK social policy pertaining to informal care has been suggested as ‘missing’ (see Lloyd, 2000), and clearly there is room for a consideration of the importance of both perspectives. This may facilitate a move toward more complex models of care exchanges, with clearer understandings of the positions of carer and caree. A focus on language as playing a constructive role in expressing understandings is also a productive avenue and provides a framework to offer a critique of current social policy and legislation (for example, see Henderson and Forbat (2002) for a critical review of the 1999 National Strategy for Carers). I do not wish to assert that this single case study enables us to draw sweeping conclusions about the nature of difficulties in dementia care relationships. Rather, I suggest that as an approach it has something to offer in developing understandings of how accounts are constructed and what functions can be performed coherently by people traditionally labelled ‘confused speakers’ (Shakespeare, 1998). Highlighting the construction and function of accounts of relationships can provide insights into care exchanges, and this is heightened when we take seriously the accounts of people with dementia. Acknowledgements

Many thanks to Jan Walmsley and Ann Brechin for their support in this research, and to the journal’s anonymous reviewer for their very helpful comments and suggestions for the article. References

Arscott, K., Dagenan, D., & Sterfert Krose, B. (1998). Consent to psychological research by people with an intellectual disability. Journal of Applied Research in Intellectual Disability, 11(1), 77–83.

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   :                                   Bamford, C., & Bruce, E. (2000). Defining the outcomes of community care: The perspectives of older people with dementia and their carers. Ageing and Society, 20, 543–570. Barnett, E. (2000). Including the person with dementia in designing and delivering care. London: Jessica Kingsley. Burr, V. (1995). An introduction to social constructionism. London: Routledge. Coyne, A.C., Reichman, W.E., & Berbig, L.J. (1993). The relationship between dementia and elder abuse. American Journal of Psychiatry, 150(4), 643–646. Edwards, D., & Potter, J. (1992). Discursive psychology. London: Sage. Farran, C., Keane Hagerty, E., Salloway, S., Kupferer, S., & Wilken, C. (1991). Finding meaning: An alternative paradigm for Alzheimer’s disease family caregivers. The Gerontologist, 31(4), 483–489. Finch, J. (1989). Family obligations and social change. Cambridge: Polity Press. Friss Feinberg, L. (2000). Making hard choices: Respecting both voices. http://www.caregiver.org/news_releases/study_000622C.html (accessed 30 January 2002). Gergen, K. (1999). An invitation to social construction. London: Sage. Harding, N., & Palfrey, C. (1997). The social construction of dementia. Confused professionals? London: Jessica Kingsley. Henderson, J., & Forbat, L. (2002) Relationship-based social policy: Personal and policy constructions of ‘care’. Critical Social Policy, 22(4): 669–687. Keady, J. (1996). The experience of dementia: A review of the literature and implications for nursing practice. Journal of Clinical Nursing, 5, 275–288. Killick, J. (1999). Eliciting experiences of people with dementia. Generations, 23(3), 46–50. Kitwood, T. (1997). Dementia reconsidered. Buckingham: Open University Press. Lewis, J., & Meredith, B. (1988). Daughters who care. Daughters caring for mothers at home. London: Routledge. Lloyd, L. (2000). Caring about carers: Only half the picture? Critical Social Policy, 20(1), 136–149. Lyman, K. (1998). Living with Alzheimer’s disease: The creation of meaning among persons with dementia. Journal of Clinical Ethics, 9(4), 49–57. Makin, T. (1995). The social model of disability. Counselling, 6(4), 274. McColgan, G., Valentine, J., & Downs, M. (2000). Concluding narratives of a career with dementia: Accounts of Iris Murdoch at her death. Ageing and Society, 20, 97–109. Morris, J. (1995). Creating a space for absent voices: Disabled women’s experience of receiving assistance with daily living activities. Feminist Review, 51(autumn), 68–93. Potter, J., & Wetherell, M. (1987). Discourse and social psychology. Beyond attitudes and behaviour. London: Sage. Proctor, G. (2001). Listening to older women with dementia: Relationships, voices and power. Disability and Society, 16(3), 361–376. Reid, D., Ryan, T., & Enderby, P. (2001). What does it mean to listen to people with dementia? Disability and Society, 16(3), 377–392. Sabat, S. (2001). The experience of Alzheimer’s disease. Life through a tangled veil. London: Blackwell. Sabat, S., & Harré, R. (1992). The construction and deconstruction of self in Alzheimer’s disease. Aging and Society, 12, 443–461. Saunders, P.A. (1998). ‘My brain’s on strike’. The construction of identity through memory accounts by dementia patients. Research on Aging, 20(1), 65–90.

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 () Scott, M.B., & Lyman, S.M. (1968). Accounts. American Sociological Review, 33, 46–62. Shakespeare, P. (1998). Aspects of confused speech. London: Laurence Erlbaum Associates. Sinason, V. (1992). Mental handicap and the human condition. New approaches from the Tavistock. London: Free Association Books. Twigg, J., & Atkin, K. (1994). Carers perceived. Policy and practice in informal care. Buckingham: Open University Press. van Langenhove, L., & Harré, R. (1999). Introducing positioning theory. Positioning theory moral contexts of intentional action. London: Blackwell. Wetherell, M. (1998). Positioning and interpretative repertoires: Conversation analysis and post-structuralism in dialogue. Discourse and Society, 9(3), 387–412. Woods, B. (1999). The person in dementia care. Generations, 23(3), 35–40. Biographical note L I Z F O R B AT , PhD, is

a Research Fellow at the School of Health and Social Welfare at the Open University. Her research interests include discursive psychology and constructions of difficulties within care relationships. In particular she has an interest in notions of power, ideology and family history. Her current research focuses on accounts from south Asian and African Caribbean carers about difficulties in informal dementia care. [email: [email protected]]

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