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Caregivers Need Help in End-of-Life Care

Caregivers for Relatives With Dementia Need More Support Before Death of Loved One

WebMD Health News

Nov. 12, 2003 -- People who care for an elderly relative with dementia may need more support during the final stages of their loved one's life than after death.

A new study suggests that end-of-life care for people with dementia is extremely stressful for caregivers, but caregivers show amazing resilience after the death of their loved one. Researchers say the findings show that new approaches in end-of-life care for dementia patients may be needed that address the well-being and comfort of the caregiver as well as the patient.

"One of the implications of this study is that it gives us a greater understanding of the bereavement process," says Richard Schulz, PhD, professor of psychiatry at the University of Pittsburgh School of Medicine, in a news release. "A person's reaction to death is altered by the context in which the death occurs, it is possible that caregivers who know their loved one is on a trajectory towards death grieve for that person before death, and that may be the time when they need the most support."

Caregiving Is a Full-time Job

In the study, which appears in the Nov. 13 issue of the New England Journal of Medicine, researchers followed 217 family caregivers of elderly people with dementia during the year before and after the patient's death.

Half of the caregivers reported that assisting their loved one with their daily activities equated to more than a full-time job and took at least 46 hours per week of their time.

More than half also said that they were "on duty" 24 hours a day, that their loved one had frequent pain, and that they had to quit their jobs or cut back on their hours because of the demands of caregiving.

In addition, the caregivers in the study reported high levels of depressive symptoms while providing end-of-life care to their dementia family member, but they showed remarkable resilience after his or her death.

Within three months after the death of their loved one, caregivers showed a drop in depressive symptoms and within one year they were substantially lower than the levels they reported during end-of-life care.

Nearly three-fourths of the caregivers said the death was a relief to them, and 90% said they believed the death came as a relief to the patient.

Caregivers Need Support Before Death

Researchers say that the study shows that intervention and support services for caregivers were needed most before the patient's death.

Schulz says nearly 2 million people in the U.S. have dementia, and a family member at home cares for a significant number of these patients.

"The services these people provide saves the health care system billions of dollars a year while the caregivers themselves endure both emotional and financial stress," says Schulz. "Because the number of people in this situation will increase markedly over the next two decades, this study should serve as a notice that we as a society may need to reassess how we support family caregivers."

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