Living with Alzheimer's disease : an exploratory case study

Abstract

This case study of an elderly man undertook to explore the lived experience of a person in the early stages of Alzheimer’s disease (AD) using interpretative phenomenological analysis. It was undertaken to gain a deeper understanding of the lived experience of the disease. Within the literature reviewed, an overview is given of the symptomology, diagnosis and aetiology of AD, as well as a brief discussion of AD in the South African context. Discourses surrounding AD- regarding insight and awareness, definitions of selfhood, and views on the mind body relationship- are critically discussed, as these discourses have contributed to the lack of research on the subjective experience of AD. Looking at the available literature disputing these discourses, it becomes clear that awareness, insight and the self is not completely or inevitably lost in AD, and that those with AD are able to respond consistently and reliably. Research that has taken into account the subjective experience is thus discussed. It is argued that it is not only viable, but essential, to include the experience of the person with AD in research on AD. A better understanding of how the person with AD experiences living in the world, and how AD impacts on them, is of importance in being able to better assist them and their caregivers. The themes derived using interpretative phenomenological analysis are first reported and then discussed, embedded within relevant literature. Taken together, this case study found that awareness of the difficulty associated with changes accompanying AD resulted in the person experiencing affective changes, wrestling with the self and undergoing a spiritual crisis. It was seen that the changes and challenges of the disease occur in the context of a psychological self, and that the self engaged in responses aimed at either maintaining his sense of self, or adjusting his sense of self. There are multiple factors which contributed to either of these responses. It was seen that responses aimed at maintaining the self resulted in apparent unawares or lack of insight, while responses aimed at adjusting the self resulted in expressed awareness. This study adds to the growing body of literature attesting to the importance of including the person with AD in research. It also highlights the potential benefit of therapeutic assistance within the early stages of the disease to help the person deal with the distressing changes. Furthermore, it is suggested that a protocol surrounding diagnosis be considered which can aid the person and family in better understanding and dealing with the disease. Psychoeducation could be an important facet; especially regarding preparing the family for the variety of psychological responses the person with AD may have to the difficulties and challenges. Such an understanding may help them better cope with the changes. Copyright