The carrot and the stick: benefits and barriers in getting a diagnosis

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.