End-of-Life Caregiving Offers Rewards Despite Demands

January 28, 2007

January 28, 2007

Friends and family who care for a loved one with Alzheimer’s disease or another fatal illness find end-of-life care rewarding, despite the stiff demands and emotional turmoil of providing such care. Those are the findings from a new study in the Archives of Internal Medicine, one of the journals from the American Medical Association.

Across the country, spouses, children, and friends served as informal caregivers to almost three-quarters of disabled older adults living at home during their final year of life. These disabled seniors may suffer from a variety of ailments, including Alzheimer’s disease and other forms of dementia. The study found that more than two-thirds of these caregivers found their role rewarding, despite providing more than 40 hours of care per week and making little use of caregiver-focused supportive services.

“While end-of-life caregivers reported significant emotional, physical, and financial strains, more than two-thirds endorsed personal rewards related to their helping role,” the authors write. About 70 percent agreed that their role “makes me feel good about myself” and “enables me to appreciate life more,” and 76 percent said they felt useful and needed.

What the Study Showed

Family and friends serve as the main providers of care for many seniors with long-term disabilities and those at the end of life. Earlier studies have found that these caregivers provide high levels of assistance, working many hours per week, and often experience intense demands.

In the current study, researchers at the Johns Hopkins Bloomberg School of Public Health in Baltimore assessed the dynamics of providing care among 1,149 caregivers who participated in a national survey. Of these, 182 cared for a person who then died within one year.

Most of the caregivers were spouses or children, and about 20 percent were other family members or friends. Three quarters of them were women, with an average age of 64 years. These caregivers provided, on average, 43 hours of care per week for a variety of ailments, and most provided care daily. Caring for an illness like Alzheimer’s typically requires even more hours of care, seven days a week.

Fewer than one in twenty caregivers used respite care, in which a temporary caregiver provides a break by caring for the ill individual. Other caregiving support such as support groups and counseling, are similarly under-utilized. Studies from New York University have shown that such aid can be very beneficial in minimizing stress during the care of a loved one with Alzheimer’s disease. [See the article, “Social Support is Key for Alzheimer’s Caregivers.”]

Many of the caregivers identified benefits they received from the person for whom they were caring. A full 65 percent reported that the person kept them company. Even more reported that helping out “makes me feel good about myself” and “enables me to appreciate life more.”

“Seriously ill patients have expressed the importance of ongoing daily interactions with family and friends, and the ability to help others, as components of a good death,” the authors conclude. “Data from this study indicate that primary caregivers were readily able to identify reciprocated emotional, instrumental, and financial exchanges afforded to them by the person to whom they provided assistance.”

For more on caregiving and tips to minimize stress and care, visit www.ALZinfo.org.

By www.ALZinfo.org, The Alzheimer’s Information Site. Reviewed by William J. Netzer, Ph.D., Fisher Center for Alzheimer’s Research Foundation at The Rockefeller University.


American Medical Association, press office.

Jennifer L. Wolff; Sydney M. Dy; Kevin D. Frick; Judith D. Kasper: “End-of-Life Care: Findings From a National Survey of Informal Caregivers.” Archives of Internal Medicine, January 8, 2007; Volume 167, Number 1, pages 40-46.


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