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Previous Volume 349:1936-1942 November 13, 2003 Number 20 Next

	Full Text PDF PDA Full Text Perspective by Prigerson, H. G. Letters Add to Personal Archive Add to Citation Manager Notify a Friend E-mail When Cited E-mail When Letters Appear PubMed Citation

ABSTRACT

Background Although family caregiving has been intensively studied in the past decade, little attention has been paid to the impact of end-of-life care on caregivers who are family members of persons with dementia or to the caregivers' responses to the death of the patient.

Methods Using standardized assessment instruments and structured questions, we assessed the type and intensity of care provided by 217 family caregivers to persons with dementia during the year before the patient's death and assessed the caregivers' responses to the death.

Results Half the caregivers reported spending at least 46 hours per week assisting patients with activities of daily living and instrumental activities of daily living. More than half the caregivers reported that they felt they were "on duty" 24 hours a day, that the patient had frequent pain, and that they had had to end or reduce employment owing to the demands of caregiving. Caregivers exhibited high levels of depressive symptoms while providing care to the relative with dementia, but they showed remarkable resilience after the death. Within three months of the death, caregivers had clinically significant declines in the level of depressive symptoms, and within one year the levels of symptoms were substantially lower than levels reported while they were acting as caregivers. Seventy-two percent of caregivers reported that the death was a relief to them, and more than 90 percent reported belief that it was a relief to the patient.

Conclusions End-of-life care for patients with dementia was extremely demanding of family caregivers. Intervention and support services were needed most before the patient's death. When death was preceded by a protracted and stressful period of caregiving, caregivers reported considerable relief at the death itself.

Source Information

From the Departments of Psychiatry (R.S.) and Epidemiology (A.B.M., S.Z., S.H.B.), the Institute on Aging (R.S.), and the University Center for Social and Urban Research (R.S.), University of Pittsburgh, Pittsburgh; the Department of Gerontology, University of South Florida, Tampa (W.E.H.); the Hebrew Rehabilitation Center for Aged, Boston (D.M.); the Department of Psychology, University of Alabama at Tuscaloosa (R.S.A.); and the Veterans Affairs Palo Alto Health Care System, Stanford University, Stanford, Calif. (L.T.).

Address reprint requests to Dr. Schulz at the University of Pittsburgh School of Medicine, 121 University Pl., 6th Fl., Pittsburgh, PA 15260, or at schulz{at}pitt.edu.

Full Text of this Article

Related Letters:

End-of-Life Care for Patients with Dementia
Miller F. G., Schulz R., Weiner D., Martire L.
Extract | Full Text | PDF  
N Engl J Med 2004; 350:733-734, Feb 12, 2004. Correspondence

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