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Living with a Memory-Impaired Spouse: (Re)cognizing the Experience*

  • Deborah L. O'Connor (a1)

Abstract

Spousal caregivers are the most vulnerable of all caregivers to the stresses associated with the caregiving role, yet they are the least likely of all caregivers to utilize formal support services. This low use of services is poorly understood. To develop insight into this issue, this qualitative study explored how spousal caregivers made sense of the personal experience of living with a memory-impaired partner. The goal was to better understand the interface between this personal experience and the use of formal support services. Information was gathered through the use of unstructured interviews with 14 spouses, most of whom had turned down available formal support services. Analysis of their transcripts revealed the availability of four discourses, or story-lines, for framing the experience. These included two competing story-lines which were used to structure individuals' caring activities and two other competing story-lines which provided the framework for judging one's personal competence within the experience. This paper examines these four discourses and highlights how each influences the meaning associated with the use of formal support services. This analysis makes visible the multiple and sometimes contradictory meanings that service use may have for spouses caring for a memory-impaired partner.

Les conjoints sont les soignants les plus vulnérables aux différentes formes de stress associées au fait de soigner. Ils sont pourtant ceux qui font le moins appel aux ressources de soutien formel. Les motifs de cette sous-utilisation sont mal compris. Pour développer un aperçu de cette question, les auteurs ont mené une étude qualitative qui explore comment les conjoints soignants rationalisent leur expérience personnelle de vie auprès d'un partenaire à la mémoire déficiente. L'objectif de l'étude visait à mieux comprendre le lien entre cette expérience et l'utilisation des ressources de soutien formel. L'information a été recueillie au moyen d'entrevues non structurées menées auprès de 14 conjoints dont la plupart avaient refusé des services de soutien formel qui étaient disponibles. L'analyse des transcriptions révèle l'existence de quatre discours, ou trames, permettant d'encadrer l'expérience. Celles-ci comprennent deux trames concurrentes, utilisées pour structurer les activités de soin et deux autres trames, elles aussi concurrentes, qui constituent le cadre de référence permettant de mesurer la compétence personnelle vis-à-vis l'expérience. La présente communication examine ces quatre discours et montre comment chacun influence la signification associée au recours à des services de soutien formel. Cette analyse permet de voir les significations multiples et souvent contradictoires que l'utilisation de ces services peut avoir pour les conjoints qui doivent soigner un partenaire à la mémoire déficiente.

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Keywords

Living with a Memory-Impaired Spouse: (Re)cognizing the Experience*

  • Deborah L. O'Connor (a1)

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