Caregivers for patients with Alzheimer’s disease recover rapidly from post-death depression --- with improvements evident within 3 months that continue through 1 year, according to an article in the November 13th issue of the New England Journal of Medicine. The findings come from the first detailed study of caregivers and the end of life, called REACH (Resources for Enhancing Alzheimer’s Caregiver Health), a 5-year, multicenter project that explored different interventions to support family caregivers.

"Depression often results when a family caregiver, who endures high levels of stress, is unable to alleviate the suffering of a loved one," said Richard Schulz, Ph.D., the study’s lead author. The researchers concluded that the knowledge that death marks the end of the patient’s pain may help ease the pain of loss. More than 60 percent of the home caregivers in the study said they thought the patient was in pain often or most of the time prior to death and more than 90 percent said they thought that death would be a relief to the patient. Although caregivers estimated the demented patients' pain, the patients' actual pain could not be verified.

"The home caregiver may begin to grieve while the patient is still alive. They may psychologically distance themselves and rehearse what life will be like once he or she is gone," Schulz said. More than two thirds of the home caregivers said they felt prepared for their loved one's death and 72 percent of caregivers said they were somewhat or strongly relieved by the relative's death.

In the study, American researchers followed 217 home caregiver/care recipient pairs and 180 caregiver/institutionalized care recipient pairs. The caregivers had a mean age of 65 years, were mostly women (84 percent), and had cared for their relatives an average of 3 years. The caregivers were divided evenly between spouses and offspring. Most of the patients were men with moderate to severe dementia, with a mean age of 81 years.

Information gathered from caregivers included the amount and type of care they provided, their subjective distress and depressive symptoms at baseline, 6, 12, and 18 months post-baseline, and their antidepressant use. Caregivers were also asked questions about their use and need for bereavement services.

"The study fills important gaps in knowledge about how caregivers experience the end-of-life and the period immediately following the death of relatives with Alzheimer's disease," said Sidney Stahl, Ph.D., of the National Institutes of Health. "There is little research in this area due to the difficulty of predicting when a person with dementia is nearing the end of his or her life. With Alzheimer’s disease, there are long periods of progressive decline rather than abrupt shifts in health status."

The research suggests that services currently available only to patients who are eligible for hospice assistance (such as bereavement and counseling services before death for the family and pain control for the patient) would benefit caregivers and patients with dementia, Schulz said. More than 6 million people provide long-term unpaid care to disabled elders in the U.S., according to the Federal Administration on Aging.

The study shows that caregivers' feelings of relief about the death of a loved one are normal and should not cause guilt, Schulz noted. Family members, clergy, physicians, nurses, and others can help by validating these feelings of relief when they are discussing end-of-life issues with caregivers and helping them deal with their feelings after death.