This Article  • Full text  • PDF  • Send to a friend  • Save in My Folder  • Save to citation manager  • Permissions  Citing Articles  • Citation map  • Citing articles on HighWire  • Citing articles on ISI (5)  • Contact me when this article is cited  Related Content  • Similar articles in this journal  Topic Collections  • Aging/ Geriatrics  • Medical Practice, Other  • End-of-life Care/ Palliative Medicine  • Psychosocial Issues  • Rehabilitation Medicine  • Alert me on articles by topic  Social Bookmarking   What's this?

Findings From a National Survey of Informal Caregivers

Jennifer L. Wolff, PhD; Sydney M. Dy, MD; Kevin D. Frick, PhD; Judith D. Kasper, PhD

Arch Intern Med. 2007;167(1):40-46.

Background  Family and friends are thought to be the predominant providers of end-of-life care, although nationally representative data on this topic have been lacking.

Methods  This study draws from the 1999 National Long-Term Care Survey and its Informal Caregivers Survey to characterize primary informal caregivers' experiences providing end-of-life care to chronically disabled community-dwelling older adults. Study participants were 1149 primary informal caregivers, stratified by care recipients' survival or death during the following 12 months.

Results  An estimated 11.2% of the chronically disabled community-dwelling older adults died within 1 year of being interviewed. Among persons who died, 72.3% were receiving help from an informal caregiver at the time of the interview. End-of-life primary informal caregivers helped an average of 43 hours per week, 84.4% provided daily assistance, and caregiver support services were infrequently used (ie, respite care and support groups were used by less than 5% of caregivers). While end-of-life caregivers reported significant emotional (28.9%), physical (18.4%), and financial (14.0%) strains, more than two thirds endorsed personal rewards related to their helping role. Compared with primary informal caregivers of persons who survived the following 12 months, end-of-life caregivers provided significantly higher levels of assistance and reported more challenges and strains, but they were no less likely to endorse rewards related to their helping role.

Conclusions  End-of-life caregivers provide frequent and intense assistance with few supportive services. These data underscore the relevance of families to end-of-life care, and the potential benefit of better integrating families in patient care.

Author Affiliations: Department of Health Policy and Management, The Johns Hopkins Bloomberg School of Health, Baltimore, Md.

CiteULike    Connotea    Del.icio.us    Digg    Reddit    Technorati     What's this?

THIS ARTICLE HAS BEEN CITED BY OTHER ARTICLES

Care for Patients in the Last Months of Life: The Belgian Sentinel Network Monitoring End-of-Life Care Study
Van den Block et al.
Arch Intern Med 2008;168:1747-1754.
ABSTRACT | FULL TEXT