Making sense of dementia in the social world: A qualitative study

Abstract

The reactions of others can have a significant effect on the lived experience of dementia. Although the literature contains some theories of dementia that take this into account, few studies have asked people with early stage dementia about their experiences of other people's reactions to their changed condition and social status. In the present study, 12 men and women aged 66–87 with early stage dementia, recruited through an Older Adult Mental Health Unit in London, England, were interviewed to elicit their views on others’ reactions to them since receiving the diagnosis. They were also asked what they thought others understood by the terms ‘dementia’ and ‘Alzheimer's Disease’. Transcripts were analysed using Interpretative Phenomenological Analysis. Participants displayed somewhat negative reactions to the term dementia, and were concerned others would associate it with being ‘demented’. In connection with this, although they were comfortable sharing their diagnosis with those closest to them, they were reluctant to do so beyond this private inner circle. Participants were keen for those who did know about the condition to respond authentically and honestly to them, helping them when necessary but as far as possible carrying on life as normal. A number of the participants seemed to be trying to work out how dementia differed from age-related memory loss and compared themselves with others to aid their understanding of this. The implications of these findings for clinical practice, carers and wider society are discussed.

Introduction

According to the ICD-10 Classification of Mental and Behavioural Disorders (World Health Organization, 1992), dementia is a syndrome due to disease of the brain, usually of a chronic or progressive nature, in which there is disturbance of multiple higher cortical functions, including memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgement. Consciousness is not clouded. Impairments of cognitive function are commonly accompanied by deterioration in emotional control, social behaviour, or motivation. Alzheimer's disease is the most common type of dementia and for the sake of simplicity the terms dementia and Alzheimer's disease are used interchangeably in this paper. This reflects the common tendency for people to use the term ‘Alzheimer's’ as a generic term for all types of dementia.

The subjective experience of living with dementia is influenced by many factors. Kitwood (1990), Kitwood (1993a), Kitwood (1993b), Kitwood & Bredin (1992), Kitwood (1997) have suggested that the way in which people with dementia are treated has a significant impact on their experience of the disease and its progression. Kitwood wrote “If we follow the development of any person's dementing condition closely, again and again we will come to see how the social and interpersonal factors come into play, either adding to the difficulties arising from neurological impairment, or helping to lessen their effects” (Kitwood, 1997, p. 40). This research has focused on the impact of social context on the experience of individuals suffering from dementia, with particular emphasis on the interaction of social, psychological and neurological factors in shaping this experience.

Other authors have highlighted the effect a diagnosis of dementia has on how one is perceived by others. Sabat, Napolitano, and Fath (2004) presented a case study that illustrated Kitwood and Bredin's (1992) concept of “malignant social psychology” or “malignant positioning”. The authors argue that having a diagnosis of Alzheimer's disease affects how a person's actions are interpreted and contributes to the construction of a social identity as a dysfunctional patient. Sabat and Harré (1992) similarly emphasised the critical role that others’ perceptions play in the construction of a person's social self. Through a number of case examples they illustrated how people diagnosed with Alzheimer's disease struggle to maintain their social selves because others do not co-operate with their attempted constructions of these selves.

Harris and Sterin (1999) analysed data from in-depth interviews with 17 individuals diagnosed with early stage Alzheimer's disease. Their aim was to better understand the diagnosed person's sense of self and identity and the social milieus that might affirm rather than undermine this sense of self. They found that the social interactions of the people they interviewed had a significant impact on their self-esteem and their capacity to preserve “their held self definition.” (Harris & Sterin, 1999, p. 255)

More recently Clare (2003) carried out a qualitative study using interpretative phenomenological analysis (IPA) to investigate awareness in people with early stage Alzheimer's disease. She interviewed 12 individuals with this diagnosis to explore the influence of psychosocial factors on their awareness of their illness. From these data, she developed a model of construction of awareness in early stage Alzheimer's disease that acknowledges the role of biological factors and mechanisms but gives primacy to psychosocial factors and self-concept in understanding whether a sufferer demonstrates awareness of having the disease.

Although a number of theories have been presented concerning the possible effects of others’ reactions and perceptions on people who have been diagnosed with dementia, this issue has received limited research attention. There are few studies that ask people with early stage dementia about their experiences of other people's reactions to their changed condition and social status. The aim of this study was to investigate the lived subjective experience of people with early stage dementia. The study sought to explore how participants’ own perception of their condition and their understanding of others’ reactions to them, had changed since they had received a diagnosis of dementia. It also aimed to explore what they thought people in the wider social network understood by the terms ‘dementia’ and ‘Alzheimer's disease’. Some distinction may be drawn between people's own perception of their illness and other people's perception of their illness. However as the aforementioned literature suggests, these sets of perceptions are often overlapping and mutually reinforcing and the current study does not attempt to address these perceptions in isolation.