Knowingly not wanting to know: Discourses of people diagnosed with mild cognitive impairment

Introduction

People are given a label of Mild Cognitive Impairment (MCI), if they are found to show a mild decline in either single or multiple cognitive domains, such as memory, attention, visuospatial or executive functioning abilities. Their global cognitive abilities remain intact, alongside their ability to undertake activities of daily living, unlike when given a diagnosis of dementia (Gauthier et al., 2006). However, MCI is a label that describes a heterogeneous clinical presentation, and the cognitive changes over time may progress to a dementia, remain stable or improve to a previous state of functioning. The percentage of people who develop a dementia after being given a diagnosis of MCI, is thought to vary from 2% to 31% (Bruscoli & Lovestone, 2004).

The term MCI was originally created for research purposes and is relatively unknown to the general public. Therefore, a lack of societal knowledge around MCI may impact on the meaning assigned to it by people (Dale, Hougham, Hill, & Sachs, 2006). Limited understanding of a diagnosis can cause uncertainty, and people who have been given the diagnosis of MCI are at risk of either over or under estimating the significance of it (Lingler et al., 2006). Thus far the majority of research into MCI has focussed on characterising the rates, predictors and potential modifiers of progression to specific dementia types (Petersen et al., 2001).

In order to improve understanding of the effects of being given a diagnosis of MCI, research is beginning to focus on the narrative accounts of these individuals. Primarily negative emotions have been associated with being given a diagnosis of MCI, including sadness, frustration, reduction in self-confidence and embarrassment, whilst people have also expressed uncertainty around the nature of the diagnosis (Joosten-Weyn Banningh, Vernooij-Dassen, Rikkert, & Teunisse, 2008; Lingler et al., 2006; Roberts & Clare, 2013). Furthermore, a number of the qualitative studies have found that people with MCI are likely to attribute their problems to various causes, such as normal ageing, approaching dementia or somatic causes (Beard & Neary, 2013; Berg, Wallin, Nordlund, & Johansson, 2012; Corner & Bond, 2006; Joosten-Weyn Banningh et al., 2008; Lingler et al., 2006). As a result, various coping strategies have been employed by people with MCI, with conflicting evidence as to whether problem and emotion-focussed coping strategies are used more often than dysfunctional coping strategies (McIlvane, Popa, Robinson, Houseweart & Haley, 2008; Roberts & Clare, 2013).

The exploration of the narrative accounts of individuals with a diagnosis of MCI has so far primarily focussed on the lived experience of MCI, which has increased understanding of the diagnosis at an individual and personal level. However, with limited knowledge about MCI in the public domain, there has been little focus on how this diagnosis is constructed at a societal and communal level, despite the social consequences and implications of predicting a possible diagnosis of dementia, potentially a long time before functional symptoms are experienced. Given that a diagnosis of any ‘memory problem’ can create social problems for affected individuals, making sense of and understanding the MCI illness identity is of great social significance (Beard & Neary, 2013).

Through interviewing people with a diagnosis of MCI, this study aims to identify how people draw on societal shared meanings of MCI, as expressed in their use of language; thus, increasing the understanding of how they position themselves in respect to their previously reported attributions of the diagnosis to aspects like dementia and ageing. Understanding the different discourses that people with MCI draw on and move between, might shape the understanding of how they construct the diagnosis.

Conceptual background

A discourse is the narrative of a phenomenon as it has become shaped through shared meanings, norms and values, personal and group identities and negotiated interactions (Harper, 2012). Discourse analysis attempts to understand how people use language to construct versions of the social world (Burck, 2005). It does not aim to capture participants’ authentic meanings, intentions or experiences, but rather analyses language as social text, whereby in different speech situations and social contexts the individual draws upon a variety of linguistic resources (Potter & Wetherell, 1987; Talja, 1999). Language is considered a means of constructing, rather than mirroring, reality (Harper & Thompson, 2011).

When language is studied for its discourses, it is studied for its functions, both intended and unintended (Wetherell & Potter, 1988). Language reflects a form of social action, whereby involvement in social interactions are managed by people through discursive activities, such as to justify, categorise, rationalise, explain, attribute, name and blame. In addition, people can use language to position themselves in a variety of ways. Different positions entail different degrees of accountability and can have a variety of functions, such as to distance the speaker or to authoritatively endow what is being said (Harper & Thompson, 2011). All of these functions of language are used by people within particular contexts to achieve social and interpersonal objectives (Willig, 2013).

Method

Participants

Seven people participated in the study. All were British and Caucasian. Demographic data were recorded (Table 1).

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Table 1.

Demographic details of participants.

Participant a	Age	Marital status	Highest level of education
Gwen	78	Married	Secondary school
Clive	76	Married	College
Andrew	79	Married	College
Jack	72	Married	Secondary school
Margaret	77	Married	University
Simon	61	Married	College
William	60	Divorced	College

a

All participants’ details and accounts are presented under a pseudonym and any identifying details have been removed, anonymised or generalised in order to preserve confidentiality.

Findings

Three discourses emerged during the analysis of the interview material. The first discourse revealed was participants ‘Not Knowing’ about MCI. As a result, participants drew on and moved between two other, more familiar discourses; ‘Knowing’ about ageing and dying and ‘Not Wanting to Know’ about dementia.

Discussion

Interviews with people, who had been diagnosed with MCI, revealed three discourses associated with MCI: ‘Not Knowing’, ‘Knowing’ and ‘Not Wanting to Know’. There appeared to be no coherent discourse available to people around MCI, in which they would have been able to position themselves. This left participants searching for the experts who could explain and give them the language. In the absence of reliable experts, participants appeared to look for other discourses that were more familiar to them and that would help them to position themselves as being diagnosed with MCI, two discourses emerged: ageing and dying, and dementia.

The findings of this study have built upon and added to the previously reported narrative accounts of those with MCI. Up until this point, the narrative accounts of those with MCI have primarily focused on exploring the experience of being diagnosed with and living with MCI. Studies have looked at the ways in which people try to make sense of the diagnosis, the coping strategies employed and how people attribute symptoms (Beard & Neary, 2013; Berg et al., 2012; Corner & Bond, 2006; Joosten-Weyn Banningh et al., 2008; Lingler et al., 2006; McIlvane et al., 2008; Roberts & Clare, 2013). Within this study, participants oscillated between wider available and generated discourses around ageing/dying and dementia, ‘Knowing’ and ‘Not Wanting to Know’. This tension in discourses between ageing and dying, versus dementia was evident throughout the participants’ interviews, with participants borrowing from these more familiar discourses as a way of helping to find a position regarding their MCI diagnosis. Whilst previous studies have highlighted that people with MCI are likely to attribute memory loss to causes such as ageing or dementia (Beard & Fox, 2008; Dean & Wilcox, 2012; Lingler et al., 2006), this study revealed that although ageing was seen as ambivalent and death as inevitable, participants attempted to position themselves within this discourse, rather than that of dementia, which only offered a dreaded position. Their use of language showed attempts at distancing themselves from the dementia discourse. However, participants seemed aware of the possibility of dementia, despite not fully being informed of the prognosis of MCI.

In Western culture, people have access to different discourses to talk about old age, which can be both contrasting and conflicting (Jolanki, Jylhä, & Hervonen, 2000). On the one hand, old age is constructed as an external, inevitable fact. It is no one’s fault that old age means decline. This allows people to offer an explanation for why they are no longer as active as they used to be, have failing memories, become more reliant on others, allowed to receive help, and why they have permission to be ill or frail (Giles & Coupland, 1991). However, receipt of these social privileges does contain some social risks, such as being viewed as helpless and dependant, or losing authority (Jolanki et al., 2000). An alternative discourse therefore, which preserves authority and allows someone to be treated as ‘accountable’, (Shotter, 1993) is that of being independent and self-reliant. However, in order to do this, people must distance themselves from ‘the other old’, the sick and the frail, or else credibility is lost (Jolanki et al., 2000). Given the dilemmatic discourse of ageing, the participants within this study positioned themselves ambivalently within this discourse. They spoke of decline as expected (‘common thing’, ‘[j]ust that you’re getting old’), which enabled MCI to be tentatively integrated into an ageing discourse. This gave them permission to acceptably reduce their activities, accept help and become ill or frail. However, by utilising this discourse, people with MCI risked losing authority and being viewed as helpless or dependant, which a few of the participants then attempted to fight against (‘I’m not a bloody idiot!’) in an attempt to create an alternative discourse.

Terms and phrases used to describe people with dementia such as ‘there’s nobody there’, contribute to what has been termed a ‘social death’ (Sweeting & Gilhooly, 1997), which has become a pervasive view, reflected in novels, films and media reports of people with dementia. The negative connotations and fear associated with dementia appeared to cause the participants to distance the MCI discourse from that of dementia. As social identities are also constructed by discourses, participants appeared to develop strategies to make the unmanageable manageable (Birenbaum, 1992) by referring back to the known but ambivalent discourse of ageing and dying. If all stages of dementia are given the same discourse (that of the end stages), then people diagnosed with MCI must attempt to differentiate their current position from that available in a dementia discourse in order to avoid being attributed the accompanying spoiled identity (Beard & Neary, 2013; Goffman, 1963). Stigma is deeply social, and for those given aversive labels, these become social problems to be managed. Diagnostic labels and their associated discourses influence and create social identities through which social problems can be managed. A discourse which talks about a diagnosis of MCI as a ‘pre-dementia’ diagnosis could therefore create tensions.

This study does have limitations. Firstly, the participants were drawn from a number of memory clinics across North Wales, which all operate differently in terms of the sharing of the diagnosis and pre and post diagnostic counselling. Therefore, it is likely that participants were given different information and support. Indeed, one participant in this study knew they had been given written information, although they had chosen not to read this due to fear that it would confirm that MCI was likely to convert to dementia in the future. Secondly, it is not clear how or whether both verbal and non-verbal features in the interviews may have been related to or were a reflection of the cognitive impairment, rather than as a way of positioning themselves within the discourses. There are few studies that have used discourse analysis to study the language of people who have cognitive difficulties. The sample of participants were heterogeneous in their level of impairment, with some participants more recently diagnosed with fewer cognitive changes, and other participants reporting functional difficulties, which could be a symptom of a deteriorating condition like dementia. However, despite differing levels of cognitive impairment, the content of participants’ interviews was noticeably more fluent when they spoke about known discourses (ageing/dying and dementia) than MCI, suggesting that hesitant and disjointed speech was a feature of the discourse rather than that of cognitive impairment.

People with dementia are often regarded as unable to contribute to the social discourse of their condition or even narrate their own experience of illness (Beard & Neary, 2013). Similarly, people with MCI seem likely to become the victim of this discourse, where people with cognitive impairment cannot contribute to the discourse of the diagnosis they have been given. People with MCI must be given the opportunity to contribute to the social discourse of their diagnosis and share their experience and knowledge. This study showed that the MCI discourse is not well established outside a research and clinical context, and can only be understood by those diagnosed with MCI in the context of fear of dementia, or the ambivalence of ageing and dying. Whilst an ageing and dying discourse does not threaten the identity of people with MCI, the knowledge that MCI could deteriorate and lead to a dementia discourse does. With a dementia discourse as a potential future option, people with MCI will become fearful of their positioning in the future and this could create unnecessary complications, and possible compliance with dominant discourses.

With this in mind, clinicians must consider both the amount of, and how information is presented to patients about MCI at pre and post diagnostic counselling, including where MCI is positioned in respect to dementia. Pre- and post-diagnostic counselling are primary opportunities for the clinician to help people with MCI shape the discourse around the diagnosis, which may help them to meaningfully integrate the diagnosis into a supportive discourse, rather than become susceptible to other discourses which each pose challenges. However, this poses a further question – do clinicians have a well-formed discourse around MCI? No studies so far have specifically looked at memory clinic clinician’s views of the diagnosis, or the language that they use to speak about MCI and make sense of it for patients. Alternatively, the current lack of discourse around MCI may provide an opportunity for those most intimately affected by it, to contribute to it and shape it.

Over time it would appear that clinical research and medical experts have introduced a diagnosis of MCI into current medical discourse and thus have imposed this diagnosis of MCI on the general public. The findings of this study would suggest that currently there is a lack of discourse around MCI and this provides people with the opportunity to influence the discourse around MCI and decide whether it is a meaningful or helpful social construction and label.