Resistiveness to Care as Experienced by Family Caregivers Assisting People with Dementia

Open Access
Author:
Spigelmyer, Pamela C
Graduate Program:
Nursing
Degree:
Doctor of Philosophy
Document Type:
Dissertation
Date of Defense:
May 12, 2015
Committee Members:
  • Judith E Hupcey, Dissertation Advisor
  • Judith E Hupcey, Committee Chair
  • Susan Jayne Loeb, Committee Member
  • Lisa Ann Kitko, Committee Member
  • Dr Carol Smith, Committee Member
  • Robert William Schrauf, Committee Member
Keywords:
  • Family Caregiving
  • Dementia
  • Nursing
  • Phenomenology
  • Resistiveness to Care
Abstract:
Currently in the United States the vast majority of all people with dementia are cared for in their homes by a family caregiver. Many of these family caregivers have expressed distress with behaviors displayed by the person with dementia during caregiver-assisted activities. Nurse researchers interested in dementia behaviors have defined these episodes as resistiveness to care and have investigated the use of interventions with family caregivers to modify the resistive behaviors and to decrease family caregiver distress when the behaviors occur. Only modest success has been achieved with these current interventions. Therefore a scientific phenomenology study was conducted to investigate the lived family caregiver experience of resistiveness to care. This method incorporates a human science approach, a disciplinary perspective, and is ideal for studying behavioral phenomenon that may not be readily studied by the natural sciences. A nursing disciplinary perspective was used during the analysis of this study and permitted the nurse researcher to grasp objectively the subjective structural meaning assigned to this phenomenon by family caregivers. The outcome of the descriptive scientific phenomenology method is to identify and define perceptions of an experience. Upon Institutional Review Board approval eight dementia family caregivers were recruited from Alzheimer’s support group meetings, provided informed consent and were interviewed individually at a mutually agreed upon location. Each participant provided in depth descriptions of chosen resistive events that they experienced. Analysis using the scientific phenomenology method revealed a structure of resistiveness to care experience that nurses can use to gain incites into resistiveness to care as perceived by family caregivers. The structure contained five essential constituents. These constituents included, self-questioning of abilities; signal for increased future caregiver responsibilities; changed perception of personal self; unexpected emotional responses; and sees changed person not the disease. The findings are representative of the family caregiver’s lived perception of resistiveness to care, which appears to be very different from the current research literature relating to nurses’ perceptions of resistiveness to care. The identified structure also provides focal points for future research and interventions to help family caregivers to mediate the stress of resistiveness to care.