Identifier: TDX:1502
Authors: Martorell Poveda, Maria Antonia
Abstract:
This research aims at exploring social representations associated with Alzheimer's disease, as well as the practices that families, as the main caregivers, implement to deal with the person, as they see their structuring and articulation. The way in which the families of the persons with Alzheimer identifies, define and interpret the disease and how they establish and develop strategies of care, is analyzed in relation to the journey followed by the caregiver in the performance of his/her role, thus regarding the experience of caring as something that you live and feel. Likewise, the type of relationship established by the household and the closest caregivers with the sick person is noted. <br/>Based on a qualitative methodology, focused on the actor's point of view, the meetings with fifteen family care-takers from Tarragona, mostly women, have allowed to capture the sense and meaning this disease has for them and the care limited to domestic environment. Participant observation, in-depth interviews and focal group have been used as basic strategies for information collection with family caregivers. Likewise, participant's observation has been done in the Mutual Support Group of the Association of Family Members of Alzheimer's Patients of Tarragona and in a Diagnosis Unit of Dementia. Field work has been enriched and completed with information obtained through other sources such as newspaper clips, booklets, bulletins, magazines and material disseminated by Family Members Associations, web-pages, stories, accounts or novels on this issue. This material has provided a vision of how discourses around Alzheimer's disease are expressed and spread. <br/> <br/>The analysis of the results evidences the existence of a prevailing biomedical discourse on Alzheimer's disease, which is reflected in the representations and practices of the familiar caregivers, and which is made evident in relation to certain aspects, such as the identification of lack of memory as a key symptom, locating the evil in the brain, understanding the disease as an evolutive process organized by phases according to the impairment, several control practices set up by caregivers in handling the care of their family member, etc. By influence of this discourse, it has been verified that family members internalize messages, metaphors and images which have to do with the 'stigma', the 'loss of identity' or 'social death' of the subject, which focus mainly on the prevailing concept of the disease rather than on the person's consideration. <br/> <br/>Regarding the experience of caring, we can observe the significance of the everyday world of relations that are established between the caregiver and his/her family member, where a communicative and interdependent process is generated, which is largely conditioned by the diverse representations around the disease and the person. <br/>Finally, as a result of the discourses and essential representation on Alzheimer, the image of this disease emerges as a systematic and inexorable process of loss of identity by the subject. The analysis suggests that this loss of identity is linked to a growing depersonalization of the sick, and leads to images and practices which tend to infantilization and to what I have regarded as vegetalization. Caregivers, however, have also manifested practices through which they give recognition to his/her family member.
Repositori URV