Depression and grief reactions in hospice caregivers: from pre-death to 1 year afterwards

Background: As the US population ages, more and more individuals will find themselves facing the demanding task of caring for terminally ill family members. Yet strikingly little is known about the emotional toll such caregiving exacts from caregivers, or how the stresses and strains of caregiving affect later grief reactions. This study examines the emotional adjustment and grief intensity of bereaved caregivers from their prebereavement (caregiving) baseline through the first year after the death and compares the effects of caregiving and subsequent bereavement on spouses and adult children. Methods: Forty-eight adult children and spousal caregivers of hospice patients and 36 controls were evaluated shortly before the deaths of their loved ones and again at 2, 7, and 13 months after their deaths. All subjects were administered the Hamilton Rating Scale for Depression, Brief Symptom Inventory, and the Texas Revised Instrument of Grief. Results: Depression and other indices of psychological distress are highest during the caregiving period and during the first few months after the death, before decreasing over the duration of the first year. Many symptoms of grief remain prominent as long as 13 months after the death of a parent or a spouse. There were no differences in intensity of grief, depression or other indices of distress between bereaved children and bereaved spouses. Conclusions: The magnitude of the stress of caregiving may be underestimated. Depression is at least as likely to emerge in the context of caregiving as it is in the postbereavement period. Therapeutic interventions may need to take into consideration the expected distress associated with caregiving and the chronicity of grief reactions. Limitations: The large dropout rate, reliance on self-report ratings and demographically homogeneous sample may limit generalizability of findings. (C) 2002 Elsevier Science B.V. All rights reserved.