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[ Recorded presentation ] Recorded presentation

A comparison of unmet need in family caregivers of persons with dementia across political boundaries

Sarah E. Abrams, PhD, Department of Nursing, University of Vermont, 211 Rowell Hall, 106 Carrigan Drive, Burlington, VT 05405, 802-656-3061, Sarah.Abrams@uvm.edu

Purpose: Few extant studies address caregivers’ perceptions of the political and social forces that interact with personal and familial characteristics to facilitate or inhibit service use among caregivers of demented adults. This preliminary investigation draws on caregivers’ understanding of the political cultures of their communities and states of residence, and their perceptions of what makes services work or not work for families with demented adults in their care to help determine what questions need to be asked in future research efforts with family caregivers. Method: Group interviews were used to elicit information about service use, accessibility and acceptability, political and social facilitators and constraints, and other issues of caregiver concern related to supportive services for dementia caregiving families. Interviews were completed for 16 Alzheimer’s Association support groups representing 110 individual caregivers in two Northern New England states. Standard techniques for qualitative data analysis were employed. Findings: Lack of legislator interest in the non-voting aged, opposing values placed on public and private responsibility, rural-urban financial disparities, and “Yankee independence” were perceived barriers. Coupled with actual issues of staff shortages, discontinuities of service, and failures of primary care, the combination accounted for the caregivers’ sense of needing to pull themselves up by the bootstraps and manage alone. Implications: The information will be used to generate a survey questionnaire specific to the region in Phase II of this study. Preliminary information can help nurse providers to more completely evaluate service utilization and to advocate for needed changes in infrastructure or programming.

Learning Objectives: At the end of this session, the learner will be able to

Keywords: Dementia, Family/Consumer Perspective

Presenting author's disclosure statement:
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.

[ Recorded presentation ] Recorded presentation

Not Forgotten

The 132nd Annual Meeting (November 6-10, 2004) of APHA