The goals of this study were to identify the benefits and barriers perceived by family caregivers of persons who have been through a diagnostic assessment for dementia symptoms and to determine which caregivers experience more benefits and barriers associated with assessments. A survey was mailed to caregivers involved in the decision to seek a diagnostic assessment for a family member at a University of Kentucky memory disorders clinic. A total of 528 family caregivers (response rate 71.7%) returned a 4-page survey designed to elicit benefits, barriers, and demographic information. Respondents delayed the diagnostic assessment for an average of 22.4 months after noticing symptoms. Perceived benefits involved confirmation of a medical condition, access to treatment, and help preparing for the caregiving role. Barriers were both emotional and pragmatic in nature. Respondents who were younger, visited the rural assessment clinic, and had less education experienced more barriers. All groups reported receiving the same number of benefits from the assessment. By incorporating these benefits and barriers, interventions can be designed to increase the likelihood of early diagnostic assessments.
One contributor to caregiving burden is the stress of making decisions. Family caregivers need support to consider and implement decisions. Support is likely to result in informed decisions and decreased guilt. The purpose of the study described in this article was to understand the decision processes of family caregivers of people with dementia using a multiple case study approach that would result in a model of their decision processes, with emphasis on support needs. The proposed model, based on control theory, charts the caregiving experiences over time and documents decisions made to maintain tolerable situations. This model is the first step toward developing interventions to provide the support needed to take on the role of decision maker, plan for the future, and make informed decisions.
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