"Flying by the seat of our pants": what dementia family caregivers want in an advanced caregiver training program

Res Nurs Health. 2012 Dec;35(6):598-609. doi: 10.1002/nur.21504. Epub 2012 Aug 21.


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.

Publication types

  • Multicenter Study
  • Research Support, U.S. Gov't, Non-P.H.S.

MeSH terms

  • Aged
  • Aged, 80 and over
  • Alzheimer Disease
  • Behavioral Symptoms
  • Caregivers / education*
  • Caregivers / psychology
  • Decision Making
  • Dementia*
  • Disease Progression
  • Female
  • Focus Groups
  • Health Education / methods*
  • Home Nursing / education*
  • Humans
  • Maine
  • Male
  • Middle Aged
  • Needs Assessment*
  • Patient Navigation
  • Qualitative Research
  • Self Care
  • Social Support