End of life care and reactions to death in African-American and white family caregivers of relatives with Alzheimer's disease

Family caregivers for relatives with Alzheimer's Disease (AD) often experience significant stress-related problems in mental and physical health. Patients with AD often survive for protracted periods of time, placing an extensive burden of care on the caregiver prior to the patient's death. The present study addresses ethnic differences in the experience of AD caregivers around the time of their loved one's death, including life-sustaining treatment decisions and reactions to death. The results showed that, in our sample, more patients died in their homes than has been reported for deaths in the United States. African-American and White caregivers differed substantially in their reports of end of life care and subjective reactions to the death. Compared with White caregivers, African-American caregivers were less likely to make a decision to withhold treatment at the time of death, less likely to have their relative die in a nursing home, and reported less acceptance of the relative's death and greater perceived loss. Results suggest that death after AD caregiving deserves further study, and that ethnic differences in end of life care and bereavement may be of particular importance.