The Relationship Between Family Caregivers’ Anticipatory Grief and Severity of Dementia


  • Nicole Gavin Indiana University School of Medicine
  • Mu Shan Regenstrief Institute
  • Nicole Fowler Indiana University Center for Aging Research, Regenstrief Institute; Division of General Internal Medicine and Geriatrics, Department of Medicine, Indiana University School of Medicine



Background/Objective: Anticipatory grief is the process of experiencing normal bereavement before the physical death of a significant person. To date, anticipatory grief has been related to higher levels of caregiver depression, anxiety, subjective burden, and poorer problem solving. Additionally, higher levels anticipatory grief are observed in caregivers of those with Alzheimer’s Disease and Related Dementias (ADRD) compared to caregivers of other conditions. The primary objective of this analysis is to determine the relationship between caregiver anticipatory grief and dementia severity, as measured by the Anticipatory Grief Scale (AGS) and Dementia Severity Rating Scale (DSRS), respectively.

Methods: Multiple regression analyses were performed on data for ADRD caregivers (n=56) enrolled in the IU Telephone Acceptance and Commitment Therapy for Caregivers (TACTICs) trial; an RCT testing an ACT intervention for ADRD caregiver anxiety. Inclusion criteria included identifying as the primary caregiver of an ADRD patient and clinically significant anxiety (GAD7 score >10).

Results: The average age of caregivers was 61.9 years, 41.1% were spouses, 83.9% were white and 14.3% were black. Mean anticipatory grief scores were notably higher (84.6) compared to the previously reported means across the literature. Multiple regression models showed a caregivers’ anticipatory grief is not significantly associated with the patients’ dementia severity as measured by the Dementia Severity Rating Scale (t=0.87). Results also revealed that higher levels of caregiver burden, as measured by the Zarit Burden Index, are significantly associated with more anticipatory grief (t=< 0.1).

Conclusion and Potential Impact: Understanding these relationships contributes to better understanding ADRD caregivers, identifying “high-risk” caregivers, and informing future interventions and care.