Caregiving for those at end of life rewarding despite challenges

Newswise — Family or friends served as informal caregivers to almost three-quarters of disabled older adults living in the community during their final year of life, according to an article in the January 8 issue of Archives of Internal Medicine, one of the JAMA/Archives journals.

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.

Family and friends serve as the main providers of care for patients with long-term disabilities and those at the end of life, according to background information in the article. Studies have found that these caregivers provide high levels of assistance and often experience associated emotional, physical and financial strains. It is recognized that these individuals also derive rewards from their caregiving role, but this concept has been little explored in research.

Jennifer L. Wolff, Ph.D., and colleagues at the Johns Hopkins Bloomberg School of Public Health, Baltimore, assessed the dynamics of providing care among 1,149 caregivers who participated in a national survey. The participants and the older adults for whom they provided care completed surveys in 1999. Investigators then monitored the pairs to determine if the older patient died within 12 months. Of the 1,149 caregivers who participated, 182 cared for a person who then died within one year, and 967 for a person who did not.

Among the 11.2 percent of disabled, community-dwelling older adults who died within one year of being interviewed, 72.3 percent were receiving help from an informal caregiver (compared with 48.6 percent of older adults who did not die within one year). Among the caregivers of adults in the last year of life, 41.5 percent were spouses, 39 percent were children and 19.5 percent were other family members or friends; 75.1 percent of them were female, and they had an average age of 64 years. They provided an average of 43 hours of care per week, and 84.4 percent of them provided daily assistance.

Less than 5 percent of caregivers used respite care (in which a temporary caregiver provides a break by caring for the ill individual) or caregiving support groups, while 62.3 percent reported using assistive devices, 37.2 percent used personal or nursing care services and 28.3 percent used home modifications—all interventions designed to help the disabled or ill older adult.

“While end-of-life caregivers reported significant emotional (28.9 percent), physical (18.4 percent) and financial (14 percent) 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. Many also identified benefits they received from the person for whom they were caring; 65 percent reported that the person kept them company, 26 percent said that they helped financially and 20.8 percent said that they helped with household chores.

“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.”