Sustaining care for a parent with dementia: an indefinite and intertwined process

Int J Qual Stud Health Well-being. 2017;12(sup2):1389578. doi: 10.1080/17482631.2017.1389578.

Abstract

This study aimed to understand how adult children sustain caring for persons with dementia (PwDs) within their family and formal care contexts in Canada. Half-day focus groups were conducted with adult daughters and adult sons in Toronto, Canada. Using constructivist grounded theory, we examined both substantive concepts and group dynamics. Sustaining care was interpreted as an indefinite process with three intertwined themes: reproducing care demands and dependency, enacting and affirming values, and "flying blind" in how and how long to sustain caring (i.e., responding to immediate needs with limited foresight). Family values and relationships, mistrust toward the institutional and home care systems, and obscured care foresight influenced care decisions and challenged participants in balancing their parents' needs with their own. Positive and negative aspects of care were found to influence one another. The implications of these findings for research and policy are discussed.

Keywords: Alzheimer; adult child; caregiving; dementia; family care; focus group; formal care; grounded theory; informal care; relational care.

MeSH terms

  • Adult Children*
  • Aged
  • Canada
  • Caregivers*
  • Dementia / nursing*
  • Empathy
  • Female
  • Focus Groups
  • Grounded Theory
  • Home Care Services
  • Home Nursing
  • Humans
  • Male
  • Middle Aged
  • Parent-Child Relations*
  • Parents*
  • Social Support
  • Stress, Psychological

Grants and funding

This work was supported by the Canadian Institutes of Health Research (Grant #: 278311) and various doctoral student awards, which were sponsored by Canada’s AGE-WELL Network of Centres of Excellence, Toronto Rehabilitation Institute (University Health Network), and the Rehabilitation Sciences Institute at University of Toronto in Toronto, Canada.