Riding out the storm: A grounded theory study of Dementia caregiver grief and bereavement following family member death in long-term care settings

Purpose: The purpose of this study is to explore the grief/bereavement process of Alzheimer's Disease and Related Dementias (ADRD) caregivers following death of a family member in long-term care (LTC) and develop a theoretical model of this phenomenon based upon in-depth individual interviews. There is limited evidence examining ADRD caregiver grief and bereavement following family member death in LTC settings. Grounded Theory methodology has not been utilized to explore this phenomenon. Background: ADRD is estimated to be the 6th leading cause of death in the United States. Most individuals with ADRD die in LTC settings, where grief and bereavement support to surviving family members is virtually non-existent. Twenty-percent of these caregivers experience prolonged and/or exaggerated grief reactions that may impair their physical/mental health. Method: A Grounded Theory design was used in this study. Participants were caregivers of a family member with ADRD who died in a LTC setting, recruited via Internet-based websites and caregiver forums. The interview guide explored recall of end-of-life grief and bereavement and the impact of LTC placement. Audio-taped individual interviews were conducted via Internet-based video-conferencing or telephone. Interviews were transcribed verbatim and entered into DeDoose© (qualitative data management software). Grounded theory methods were used to analyze data, formulate theoretical assumptions, and develop a theoretical model. Constant comparative analysis was used to interpret the findings and determine data saturation. Rigor was ensured through peer debriefing, audit trails, and expert reviews of the proposed model. Results: Participants included adult children/grandchildren (n=16) and spouse (n=1) ranging in age from 30 to 77 years (M=56.94, SD=5.36). The mean time between death and the interview was 2.98 years (SD=2.22). The emerging model identified is comprised of 3 interdependent components of bereavement (behavioral, cognitive, and emotional). The following factors related to LTC placement were identified as facilitators or barriers to caregiver grief/bereavement: relationships/support with staff, death rituals, end-of-life care (hospice, end-of-life suffering), frequent deaths of other LTC residents, staffing-shortages, and length of time in LTC. Conclusions: Findings from this study can be used to develop bereavement interventions for ADRD caregivers whose family members die in LTC.