DOCTOR'S VIEW ARCHIVE
Medical Author: Frederick Hecht, M.D.
Medical Editor: Barbara K. Hecht, Ph.D.
Caring for someone with Alzheimer's disease takes its toll. According to the first detailed study ever done of caregivers and the end of life, family members looking after a relative with dementia have higher levels of depression, and greater need for support while they are providing end-of-life care than they do after a period of bereavement. Depression often results when a family caregiver, who endures high levels of stress, is unable to alleviate the suffering of a loved one," said Dr. Richard Schulz, the University of Pittsburgh, who led the study which was published in the New England Journal of Medicine (1).
Home caregivers usually begin to recuperate from their depression within three months after the death of their loved one with dementia, and the improvement they experience tends to continue for a year. Knowing that the patient's death marks the end of his or her suffering may help cushion the blow of losing the loved one. More than 60% of the home caregivers in the study said they thought the patient was in pain often or most of the time prior to death, 72% of caregivers said they were somewhat or strongly relieved by the relative's death. and more than 90% said they thought that death would be a relief to the patient.
On Duty 24 Hours a Day
The research focused on 217 family caring for relatives with dementia during the year before the patient's death and after death. Half the caregivers reported they spent at least 46 hours a week assisting their relative with activities of daily living. More than half the caregivers reported that they felt they were "on duty" 24 hours a day and that they had had to end or reduce employment owing to the demands of caregiving.
Quick GuideDementia, Alzheimer's Disease, and Aging Brains
The caregivers had high levels of depressive symptoms while providing care to relatives with dementia. But the caregivers showed remarkable resilience after the death of their demented relative. Within three months of the death, the caregivers had clinically significant declines in the level of their depressive symptoms, and within a year the levels of symptoms were substantially lower than levels reported while they were caregivers.
Grieving Ahead of Time
"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.
The study concludes that end-of-life care for patients with dementia is extremely demanding of family caregivers. Intervention and support services are most needed by family caregivers before the patient's death. When death is preceded by a protracted and stressful period of caregiving, caregivers feel considerable relief at the death itself.
This research clearly suggests that services currently available only to patients who are hospice eligible would benefit caregivers and patients with dementia. These needed services include bereavement and counseling services before death for the family and pain control for the patient.
Dr. Holly Prigerson from Yale commented that: "Providing for the mental health care needs of the second victim of Alzheimer's disease, the family caregiver, may prove a tangible and cost-effective way to ensure that both patients and caregivers have the best quality of life possible." We agree.
SOURCES: 1. R. Schultz and Others. End-of-life care and the effects of bereavement on family caregivers of persons with dementia. (Special Article) New Engl J Med 2003;349:1936-42. 2.H.G. Prierson. Costs to society of family caregiving for patients with end-stage Alzheimer's disease. (Editorial) New Engl J Med 2003;349:1891-92. 3. Information provided by the National Institute on Aging, a part of the National Institutes of Health.