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First Study of Alzheimer's Caregivers and End-of-life Cites Both Remarkable Resilience, Need for Support

Home caregivers showed rapid recuperation from depression within 3 months of the death of their demented relatives and the improvements continued for a year, according to the first detailed study of caregivers and the end of life. The findings, reported in the November 13, 2003, New England Journal of Medicine, are based on data from REACH (Resources for Enhancing Alzheimer's Caregiver Health), a 5-year, multi-site initiative investigating 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 University of Pittsburgh primary investigator.* Knowing that the patient's death marks the end of his or her suffering may help cushion the blow of losing the loved one, according to the study. 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. While caregivers estimated the demented patients' pain, the patients' actual pain could not be verified. This is an area that requires further study.

"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 the caregivers said they were somewhat or strongly relieved by the relative's death.

The 18-month study, funded by the National Institute on Aging (NIA) and the National Institute for Nursing Research (NINR), part of the National Institutes of Health (NIH), followed 217 home caregiver/care recipient pairs and 180 caregiver/ institutionalized care recipient pairs. The caregivers had a mean age of 65, were mostly women (84%), 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, who suffered moderate to severe dementia, with a mean age of 81. 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 anti-depressant 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 (AD)," said Sidney Stahl, Ph.D., Chief of the Individual Behavioral Processes Branch of NIA's Behavioral and Social Research Program. "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 AD, 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 hospice eligible (such as bereavement and counseling services before death for the family and pain control for the patient) would benefit caregivers and patients with dementia, he said. More than 6 million people provide long-term unpaid care to disabled elders in the U.S., according to the 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 said. 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, he suggested.

The NIA and the NINR, two of the 27 components of the National Institutes of Health, are part of the U.S. Department of Health and Human Services. The NIA leads the federal efforts supporting and conducting research into the biomedical and social and behavioral aspects of aging, including AD. More information on AD can be found at the NIA-supported Alzheimer's Disease Education and Referral (ADEAR) Center by visiting the ADEAR website www.alzheimers.org or by calling 1-800-438-4380 for publication and information. The NIA recently published a caregiver guide on AD in English and Spanish, which is available free. The NINR supports research on the care of individuals across the life span — from management of patients during illness and recovery, to the reduction of risks for disease and disability, the promotion of healthy lifestyles and quality of life for those with chronic illness, and the care of individuals at the end of life. More information about NINR can be obtained at the website: www.nih.gov/ninr.

*"End of Life Care and the Effects of Bereavement Among Family Caregivers of Persons with Dementia" was authored by Richard Schulz, Ph.D., Aaron B. Mendelsohn, Ph.D., William E. Haley, Ph.D., Diane Mahoney, Ph.D., Rebecca S. Allen, Ph.D., Song Zhang, M.S., Larry Thompson, Ph.D., and Steve H. Belle, Ph.D., for the Resources for Enhancing Alzheimer's Caregiver Health (REACH) Investigators.


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