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Health Care Proxy Grief Symptoms Before the Death of Nursing Home Residents With Advanced Dementia

From the Hebrew Senior Life, Institute for Aging Research (DKK, SLM), Center for Psychosocial Oncology and Palliative Care Research, Dana-Farber Cancer Institute (HP), and Department of Medicine of Beth Israel Deaconess Medical Center (SLM), Boston, Massachusetts.

Objectives: The loss experienced by family members of dementia patients before their actual death is known as "predeath grief." This study's objectives were to identify and describe factors associated predeath grief symptoms among health care proxies (HCPs) of nursing home (NH) residents with advanced dementia, and distinguish grief symptoms from those of depression.

Design: Cross-sectional.

Setting: Twenty-one Boston-area NHs.

Participants: Three hundred fifteen NH residents with advanced dementia and their HCPs.

Measurements: Factor analysis was used to distinguish predeath grief and depression symptoms. Multivariate regression analyses identified factors associated with greater predeath grief measured on a 10-item summary scale of grief symptoms. Independent variables included sociodemographic information and health status of HCPs and residents, and depressive symptoms, physician communication, preparedness for death, and satisfaction with care of HCPs.

Results: Predeath grief symptoms were distinct from depressive symptoms. The mean predeath grief scores was 15.0 ± 5.6 (range, 10–49), suggesting relatively low levels of overall grief. Yearning (i.e., separation distress) was the most frequently experienced grief symptom (sometimes, 27%; often, 18%; or always, 15%). Variables associated with greater predeath grief included HCPs whose primary language was not English, HCPs who lived with a resident before institutionalization, more depressive symptoms of HCPs, less satisfaction with care of HCPs, and younger resident age.

Conclusions: Family members of NH residents with advanced dementia experience predeath grief symptoms, particularly separation distress. Predeath grief symptoms are associated with, but distinct from, those of depression. Several factors identified HCPs at higher risk for predeath grief and who may benefit from early interventions to reduce suffering.

Key Words: Grief • depression • advanced dementia • nursing homes • health care proxy