End-of-Life Care and the Effects of Bereavement on Family Caregivers of Persons with Dementia
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., Steven H. Belle, Ph.D., for the Resources for Enhancing Alzheimer's Caregiver Health (REACH) Investigators
Background Although family caregiving has been intensively studiedin the past decade, little attention has been paid to the impactof end-of-life care on caregivers who are family members ofpersons with dementia or to the caregivers' responses to thedeath of the patient.
Methods Using standardized assessment instruments and structuredquestions, we assessed the type and intensity of care providedby 217 family caregivers to persons with dementia during theyear before the patient's death and assessed the caregivers'responses to the death.
Results Half the caregivers reported spending at least 46 hoursper week assisting patients with activities of daily livingand instrumental activities of daily living. More than halfthe caregivers reported that they felt they were "on duty" 24hours a day, that the patient had frequent pain, and that theyhad had to end or reduce employment owing to the demands ofcaregiving. Caregivers exhibited high levels of depressive symptomswhile providing care to the relative with dementia, but theyshowed remarkable resilience after the death. Within three monthsof the death, caregivers had clinically significant declinesin the level of depressive symptoms, and within one year thelevels of symptoms were substantially lower than levels reportedwhile they were acting as caregivers. Seventy-two percent ofcaregivers reported that the death was a relief to them, andmore than 90 percent reported belief that it was a relief tothe patient.
Conclusions End-of-life care for patients with dementia wasextremely demanding of family caregivers. Intervention and supportservices were needed most before the patient's death. When deathwas 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.
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