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“Flying by the seat of our pants”: What dementia family caregivers want in an advanced caregiver training program


  • The first author was a participant in the 2011 NLN Scholarly Writing Retreat, sponsored by the NLN Foundation for Nursing Education. This project was supported in part by grant number 90AE0342/01, from the U.S. Administration on Aging, U.S. Department of Health and Human Services. Grantees undertaking projects under government sponsorship are encouraged to express their findings and conclusions freely. Points of view or opinions do not, therefore, necessarily represent official Administration on Aging policy. The author gratefully acknowledges all Savvy Caregiver team members and research team members: Mark Richards, Research Analyst, and Danielle Westcott, Research Associate, both from the Muskie School of Public Service, University of Southern Maine.


Although dementia caregiver stress and burden can be ameliorated with intervention, such interventions typically occur in specific caregiving contexts and at specific points in the progression of the dementing illness. We explored the ongoing learning needs and preferences of previously trained caregivers. Descriptive analysis of caregiver survey responses (N = 168) informed follow-up focus group interviews conducted with 26 family caregivers. Content analysis of focus group data showed that caregivers enjoyed the interactive problem-solving of the group related to preparing for the future, shaping the troubling behavior of the care recipient, reshaping the resource team, and caring for themselves. These findings support the need for advanced training as caregivers move through the trajectory of caring for persons with dementia. © 2012 Wiley Periodicals, Inc. Res Nurs Health 35:598–609, 2012