By Anne Harding

NEW YORK (Reuters Health) - Nearly three quarters of disabled older people receive care from a friend or family member during their last year of life, a new study shows.

While these caregivers spent an average of 43 hours a week helping their loved one, less than 5 percent took advantage of services such as support groups or respite care, Dr. Jennifer L. Wolff and colleagues from The Johns Hopkins Bloomberg School of Health in Baltimore found.

The findings underscore both the economic value of this type of caregiving and the need to better understand how to support the people providing it, Wolff told Reuters Health in an interview. "We need to increase both the magnitude of assistance that's available for families that are doing this job and also try to develop a better evidence base about what services are relevant for a very heterogeneous group of people," she explained.

Wolff and her team looked at data from the 1999 National Long-Term Care Survey of 1,149 informal caregivers for chronically disabled, community-dwelling older adults. Caregivers were divided into two groups based on whether the person they cared for died in the year following the survey.

Among the individuals who died within 12 months of the survey, 72.3 percent were receiving care from a friend or family member, the researchers found. On average, caregivers spent 43 hours a week helping the person, with 84.4 percent assisting the person daily.

End-of-life caregivers were more likely to cite challenges and burdens to providing care than those caring for a loved one who did not die. For example, 28.9 percent felt emotional distress, compared to 14.6 percent of caregivers for survivors, while 44.8 percent said their sleep had been interrupted to care for the person, compared to 20.9 percent of those caring for people who did not die.

But the caregivers for dying people also reported greater rewards, with 69.4 percent saying caring for the person helped them to appreciate life more, 70.2 percent reporting it made them feel good about themselves, and 76 percent saying providing care helped them feel useful and needed, compared to 60.2 percent, 62.1 percent, and 64.9 percent, respectively, for caregivers of survivors.

"I think we tend to think of family caregiving as a sort of one-way dynamic," Wolff noted. "This indicates that it's much more of a two-way street."

SOURCE: Archives of Internal Medicine, January 8, 2007.