Doctor of Social Work (DSW)
Lyle S. Hallman Faculty of Social Work
Martha Keniston Laurence
Dementia, of which Alzheimer's Disease is the most common, results in severe cognitive deterioration and the victim will become increasingly unable to manage his or her own care needs. Someone else will be required to take on responsibility for attending to these needs. If married, the person most likely to be implicated is the spouse. Research has documented that these spouses are at high risk in the caregiving role, yet are the least likely of all caregivers to utilize formal support. To date, this low use of services has been poorly understood despite concerns that without assistance, these spouses may jeopardize both their own health and well-being and the quality of care being provided to their partner. The goal of this study was to better understand the personal experience of living with a memory-impaired partner and to explore how this experience interfaced with the use of formal support services. Fourteen spouses whose partners were suffering from deteriorating cognitive disorders were interviewed between one and three times. Participants were recruited who had displayed some reluctance to utilize the formal support services that service providers had suggested might be beneﬁcial or who had strong opinions regarding the role of formal support services in their personal experience. Understanding was generated using an in-depth, unstructured interview focused on exploring the participant's ‘story’ about his or her experience in general and formal service use in particular. What clearly emerged from this study was the complexity associated with the decision to utilize services. Using participants’ personal stories, I developed a conceptual model to organize understanding. This model identiﬁes and explicates the importance of particular discourses for positioning the meaning associated with service use. I suggest that there are prevailing ‘story-lines’ or discourses that provide a set of assumptions and beliefs that are used by the individual to construct one’s own personal understanding about one’s actions and possible choices. Speciﬁcally, I identify four story-lines which exert inﬂuence on meaning making. These include two story-lines which compete to locate the responsibility of caring on a continuum between a private and a societal responsibility. I call this continuum the site for locating the caring activities. Intersecting with this ‘site’ is another ‘site’ that positions one’s psychological orientation. This site, or continuum, has two story-lines associated with each of it's endpoints; these compete to establish the importance of a sense of self that is grounded in values of self-sufficiency as opposed to relational connection. Using this conceptual model, I suggest that practically, this means that the well spouse will potentially be hearing four different story-lines for sense-making. Some of these story-lines will fit well together but others will conflict. This leads to contradictory and inconsistent ‘interpretive repertoires’ for making sense of service use. The goal then becomes to determine where an individual is positioned in the quadrant created by these intersecting ‘sites' in order to assess which story-lines are most inﬂuential for assigning meaning to the use of formal service for that individual. By understanding this, service providers can begin to untangle and challenge the meanings that will be associated with service use by that individual. Moreover, examining the participant's experiences using this conceptual model highlights the ways that practices associated with providing support may be propagating story-lines that are not conducive to the use of services and are oppressive to the well spouse. Strategies for promoting more responsive, and less oppressive ‘support’ are suggested.
O'Connor, Deborah Lynn, "Living with a memory-impaired spouse: (Re)cognizing the experience, (re)storying support" (1996). Theses and Dissertations (Comprehensive). 216.