Managing threats to self: awareness in early stage Alzheimer's disease
Introduction
Lack of awareness of changes or difficulties associated with the onset and progression of dementia has often been reported as a clinical feature of Alzheimer's disease, and one that can be present from the early stages (Feher, Mahurin, Inbody, Crook, & Pirozzolo, 1991; Green, Goldstein, Sirockman, & Green, 1993). It has been suggested that a significant proportion of people with this diagnosis are unaware of their difficulties, although estimates vary considerably (e.g. Auchus, Goldstein, Green, & Green, 1994; Loebel, Dager, Berg, & Hydes, 1990; Lopez, Becker, Somsak, Dew, & DeKosky, 1994; Reed, Jagust, & Coulter, 1993; Sevush & Leve, 1993). Level of awareness has important implications for caregiving, as unawareness appears to relate to greater perceived caregiver burden (e.g. De Bettignies, Mahurin, & Pirozzolo, 1990). Studies of cognitive rehabilitation in early Alzheimer's (e.g. Clare et al., 2000; Clare, 2001; Koltai, Welsh-Bohmer, & Schmechel, 2001), supported by findings from research in brain injury rehabilitation (Prigatano (1999a), Prigatano (1999b)), indicate an association between awareness of changes/difficulties and outcome, suggesting that awareness is also important with regard to the provision of appropriate, sensitive and helpful interventions. Understanding more about awareness and unawareness of difficulties in early stage Alzheimer's may therefore be an important component in finding ways to improve the care and support offered to people with Alzheimer's and their families. Awareness is a complex concept, with varying definitions and operationalisations evident in the literature, and it remains unclear how it should best be defined, understood and assessed.
There is an extensive, largely medical literature that emphasises purely biological explanations for observed disturbances of awareness, or anosognosia, in Alzheimer's (for reviews, see Kaszniak & Christenson, 1996; Neundorfer, 1997). The biological model derives primarily from work with people who have had a brain injury. Domain-specific unawareness (unawareness of impairment in a particular function) has been described in a range of neurological disorders, for example hemiplegia or hemineglect (McGlynn & Schacter, 1989), and in some cases can be reversed through physical intervention (Bisiach, Vallar, Perani, Papagno, & Berti, 1986). This form of unawareness is thought to reflect damage in the right parietal lobe (Dimond, 1976; McGlynn & Schacter, 1989). The impairment in self-awareness and self-regulation of behaviour that can follow brain injury is thought to result from damage in the right frontal lobe (Stuss, Picton, & Alexander, in press). A cognitive neuropsychological model that aims to account for manifestations of unawareness was outlined by Schacter (1989), and has recently been elaborated in relation to Alzheimer's by Agnew and Morris (1998). However, the extent to which models derived from observation of people with brain injury are directly applicable to people with early stage dementia is open to question, and empirical support for specific neuropsychological models is lacking (Derouesne et al., 1999).
Numerous studies of awareness in Alzheimer's Disease that are implicitly or explicitly based on a biological model have sought to identify correlates and predictors of unawareness. Such studies have produced contradictory and confusing findings, possibly as a result of differing conceptualisations of awareness and the methodological limitations of the assessment techniques adopted. Awareness in these studies is typically measured by clinician's global rating of awareness as intact or absent within the context of a medical consultation (e.g. Verhey, Rozendaal, Ponds, & Jolles, 1993), by calculating the discrepancy between patient and carer ratings of severity of difficulties on a questionnaire measure (e.g. Migliorelli et al., 1995), or by assessing the discrepancy between predicted and actual performance on a laboratory memory task (e.g. McGlynn & Kaszniak, 1991), despite the significant limitations of these methods (Clare, 2002; Sabat, 2002).
Within this biological framework, only Weinstein and colleagues (Weinstein, Friedland, & Wagner, 1994) have argued that psychological factors such as denial are relevant to awareness in dementia. They proposed that people who had throughout their lives shown characteristics such as holding high expectations of themselves and viewing illness as a sign of weakness were particularly likely to deny impairments when developing AD. These authors have also highlighted the socially constructed nature of awareness and the possible impact of context on responses; this latter view is echoed in recent psychiatric models (Marková, 1997; Marková & Berrios, in press). It can be argued, therefore, that attention needs to be given to psychosocial aspects of awareness.
From a psychosocial perspective, the onset of illness or disability constitutes a form of threat to the self (Charmaz, 1983; Coleman, 1996) in which the inability to carry out conventional roles, tasks and social obligations creates difficulties with sustaining a meaningful existence, and this applies equally to the onset of AD. A social constructionist model suggests threat will be greatest in relation to the personae presented to others in social interactions, which are positioned and constructed mainly through the discursive acts of declaration and narrative (Sabat & Harré, 1992; Harré, 1998). The existence of selves in this sense requires social cooperation from others, and the way in which a presented self is viewed will affect the responses given. The way in which the person with Alzheimer's becomes positioned in social interaction has major implications with regard to this element of selfhood, which Harré (1998) terms ‘self3’. The impact of Alzheimer's on self3 is primarily a function of the responses and behaviour of others, and their willingness to cooperate in the construction of a particular self presented by the person with AD. Constructive interactions can help to maintain this aspect of self, while a ‘malignant’ social environment (Kitwood, 1997) is detrimental. The implication is that the individual will make choices about the presentation of self that reflect attempts to deal adaptively with the perceived threats to self and prevent unhelpful or uncooperative responses from others. These attempts might include, for example, attempts to hide memory lapses from others (Keady & Nolan, 1995a), or conversely a decision to ‘go public’ with a detailed account of individual experience (e.g., Simpson & Simpson, 1999). These choices are likely to impact on others’ perceptions of the person's awareness, so that someone who chooses to cope by hiding and making light of his or her difficulties may be labelled in a medical assessment as unaware. Divorced from the psychosocial context, unawareness becomes defined as a symptom of the disorder and this in turn is assumed to have a purely biological origin. There is a need to take a broader approach to awareness that acknowledges the psychosocial context alongside the impact of developing cognitive impairment, and considers the subjective experience of the person with AD.
In recent years, research has begun to consider the subjective experience and coping strategies of the person with dementia (Bender & Cheston, 1997; Cheston & Bender, 1999; Cohen, 1991; Keady, Nolan, & Gilliard, 1995; Keady & Nolan (1995a), Keady & Nolan (1995b)), but few studies have focused directly on awareness. Of those that have, most have elicited the phenomenological experience of the person with dementia only indirectly. Cotrell and Lein (1993) evaluated awareness and denial in people with Alzheimer's Disease by interviewing caregivers. Carers’ responses suggested that the patients’ reactions to Alzheimer's ranged from being fairly realistic through minimisation to complete denial, and were consistent with pre-illness ways of dealing with stress. Bahro, Silber, and Sunderland (1995) used a psychodynamic framework to explore the coping strategies of people with dementia through observation of behaviour in clinical settings, and highlighted in particular the operation of denial. Only one study has directly elicited the perspective of the person with dementia; Froggatt (1988) conducted interviews with three women thought to have Alzheimer's and demonstrated the feasibility of such an approach.
Further research is indicated, therefore, to provide a phenomenological perspective on the nature of awareness of changes/difficulties in early stage Alzheimer's which can contribute to a conceptual understanding of awareness and also assist clinicians and caregivers in providing care and interventions of a kind that can maximise well-being for the person with AD. The study reported here explored from a phenomenological stance the way in which awareness is expressed in the accounts of personal experience given by people with early stage AD, in order to develop an understanding of the psychosocial elements of a comprehensive model of awareness which could then be tested in further studies.
In view of the exploratory nature of the study, and the focus on subjective experience, a qualitative approach was considered most appropriate. This offered the advantage of allowing participants to voice their thoughts and tell their stories in their own way, without premature imposition of predetermined categories. However, although this study aimed to place subjective experience in a position of central importance, and to focus primarily on psychological and social factors, the eventual aim of research on awareness in Alzheimer's must be to develop an understanding of awareness that incorporates the operation of both psychosocial and biological mechanisms. The presence and impact of cognitive impairments therefore needed to be taken into consideration in selecting an appropriate qualitative methodology.
Some qualitative approaches, such as discourse analysis, focus primarily on the way in which pre-existing discourses are used within an interaction to accomplish particular aims (Smith, Osborn, & Jarman, 1999). These approaches do not seek to describe what the person thinks, and may question whether it is possible to identify a link between verbal self-report and underlying cognition. Using this kind of approach it might be possible to consider what discourses people with dementia use to discuss their situation, but there would be no basis for relating this to other aspects of an explanatory framework. Other qualitative approaches, in contrast, attempt to understand what participants believe and think about the topic in question, assuming some form of link between self-report and underlying cognition, albeit neither straightforward nor direct. One such method is interpretative phenomenological analysis (Smith et al., 1999), which has been described as particularly relevant for understanding subjective responses to illness, and as potentially compatible with both social cognitive models and more discursively based understandings. Interpretative phenomenological analysis is phenomenological in that it aims to explore the participant's view of the topic being investigated, and interpretative in that it acknowledges that the participant's perceptions are elicited through a dynamic, interactive process in which the researcher's own beliefs and understandings also play a part as the researcher engages in a process of interpretative activity in order to make sense of the participant's subjective world. Interpretative phenomenological analysis allows the possibility of eliciting the responses of participants to the onset of dementia and relating these to information obtained through other methods and perspectives, within a biopsychosocial framework. For this reason, interpretative phenomenological analysis was chosen for use in the present study.
Section snippets
Participants
The study presented here formed part of a wider investigation of learning and awareness in early stage Alzheimer's disease, carried out in conjunction with a specialist Memory Clinic in a large university teaching hospital serving a mixed urban and rural population in the south of England. Participants were invited to join the study if they had a medical diagnosis of probable Alzheimer's (using NINCDS-ADRDA criteria, McKhann et al., 1984) and were currently classified as being in the mild or
Results
Participants’ accounts suggested the operation of five interrelated processes reflecting awareness of their difficulties: registering, reacting, explaining, experiencing and adjusting. These processes are not conceptualised as representing a sequence of stages occurring over time, although it is assumed that some change must be registered initially in order for the cycle to begin. Instead, they are viewed as representing an ongoing reiterative cycle of developing awareness of changes heralding
Discussion
The participants’ accounts demonstrate the complex processes involved in the expression of awareness of memory problems and other changes in early stage AD. All participants acknowledged having problems with memory, and some were able to describe the gradual process of becoming aware of these; thus, none of the participants could be said to be entirely unaware. Participants made varying judgements, however, about the meaning or impact of their memory problems, expressed a range of emotional
Acknowledgements
Thanks are due to the participants and their partners, to the collaborators in the wider study of which this formed a part—Barbara A. Wilson, John R. Hodges and Gina Carter—to Nancy Pistrang, Jonathan Smith and Ilona Roth for helpful discussion, to the referrers and the Memory Clinic team, and to Julia Darling for secretarial assistance.
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