The effects of dementia derive from a great deal more than the documented neuropathological changes in the brain of the person thus diagnosed and can be exacerbated or ameliorated to some degree by the way the person is positioned by others in the everyday social world. By analysing the nature of their social interactions with others we can readily come to appreciate that the ways in which the person with dementia is treated by others can have a profoundly positive or profoundly negative effect on (1) the subjective experience of the person with dementia; (2) the degree to which the person...
The effects of dementia derive from a great deal more than the documented neuropathological changes in the brain of the person thus diagnosed and can be exacerbated or ameliorated to some degree by the way the person is positioned by others in the everyday social world. By analysing the nature of their social interactions with others we can readily come to appreciate that the ways in which the person with dementia is treated by others can have a profoundly positive or profoundly negative effect on (1) the subjective experience of the person with dementia; (2) the degree to which the person can display remaining intact cognitive abilities; (3) the ability of the person to meet the demands of everyday life; and (4) the quality of the person's social life and the meaning found in each day.
Umuntu ngumuntu ngabantu in Zulu conveys the idea that, ‘a person is a person through others’. When we begin to think about the practical meaning of this Zulu idea as it applies to people with dementia, we are confronted with what might appear to be a disjunction in the way in which persons and their attributes are viewed socially and the way in which a person's attributes are understood in terms of biomedical approaches to disease. Likewise, we are also sensitized more deeply regarding the nature of the social interactions that occur between a person with dementia and healthcare professionals. In the biological model, the tendency is to attempt to understand the nature of a disease and its signs and symptoms by viewing the diagnosed person in isolation. Social interactions are limited to those with the examining clinicians. The effects of the disease are solely understood in terms of the physical and mental changes that have occurred in the person as a result of, in the case of dementia, neuropathology. Thus, by comparing the ways in which the person comported themselves in previous years to their present comportment, we note losses. Such losses are attributed to the neuropathology of the disease and these, taken together with the person's subjective complaints, are referred to as the signs and symptoms of the illness. Our biomedical conceptualization is further informed by the person's performance on neuropsychological tests and how that performance compares to that of age-matched, otherwise healthy, people. The ways in which family informants report the person's actions and discourse as being less coherent or efficient than previously are interpreted as being ‘effects’ caused by the illness alone. Thus, relatively little weight is given to the possibility that there might be psychosocial influences that also affect the person's actions. However, the medical literature has not always been antithetical to a broader approach.
It was Lipowski who noted that a disease is not to be understood as being separate from the afflicted person and that a person encompasses not only a biological organism but also the world of …feeling and symbolic activities in thought and language. Furthermore, he is a member of a social group with which he interacts. A concept of disease is incomplete unless it takes cognizance of these facts. How a person experiences the pathological process, what it means to him, and how this meaning influences his behaviour and interaction with others are all integral components of disease as viewed as a total human response. (Lipowski 1969, p. 1198)
Taking this line of thinking further, Lipowski states rather pointedly, The response of the family caregiver and other meaningful people to the patient's illness or disability, to his communications of distress, and to his inability to perform the usual social roles may spell the difference between optimal recovery or psychological invalidism. (Lipowski 1969, p. 1200)
Exactly what sorts of responses to the person with the diagnosis have the potential to promote recovery or ‘psychological invalidism’? Before attempting to answer this question, it is important to recognize that in almost all types of dementia complete or near complete recovery is not currently possible. Still, even if we put aside the possibility of full recovery, optimal functioning, if attainable and sustainable for even a short time, could have profoundly positive effects not only on the person with dementia but also on their family and carers. That is to say, if it were possible to provide some interventions that might facilitate the ability of the person with dementia to communicate as effectively as possible, to interact with others as coherently as possible, and to sustain their sense of self-worth in the face of the effects of brain injury, it would be tremendously advantageous psychologically as well as financially to all concerned.
One purpose of the present chapter is to explore possible psychosocial interventions aimed at avoiding psychological invalidism. First, however, it is important to explore some subtle ways in which attitudes and actions of those deemed healthy may have untoward effects on the person with dementia.
Chapter. 7478 words.
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