I believe Americans think of caregiving as a function provided by spouses or adult children that occurs for older adults at the end of life. We often don’t understand the many aspects of informal caregiving, including the positive effects it has on the person needing care and the potentially negative consequences it can have for an informal caregiver.
During the summer and fall of 2005, my University of Florida research team began a study with the Rosalynn Carter Institute to analyze and understand the role of caregivers in the United States. Work on this project actually began in September of 2004 when the Centers for Disease Control (CDC) and Association for Teachers of Preventive Medicine (ATPM) funded a caregiving study in North Carolina.
Emotional Satisfaction; Physical Decline
One major finding of this research is that home care caregivers are 14 percent more likely to rank their health-related quality of life as “fair” or “poor” than are non-caregivers. This finding adds to a growing body of literature that demonstrates the negative outcomes of caregiving.
And caregivers are increasingly reaching out for additional support. Data indicates that 25.4 percent of respondents in North Carolina and 23 percent nationally receive outside help from an agency-hired aide or nurse. It is interesting to note, however, that 80 percent of one research subset reported that they agreed “a little” or “a lot” that providing care made them feel good.
Thirty percent of respondents indicated they did not know where to turn for information on short- or long-term care. When asked how often their care recipient needed more help at home but couldn’t get it, 41.3 percent surveyed in North Carolina said they experience this situation monthly, while 10.8 percent experience it daily. Furthermore, nearly 39 percent of those surveyed in North Carolina and 35 percent nationally indicate that they need assistance with finding personal time.
The implications of the study overall indicated that caregivers need more support. The University of Florida research team will continue to analyze the data from the North Carolina study, but other states must follow suit for this data to be meaningful on a national level.
By Elena M. Andresen, Ph.D. for Home Instead Senior Care®
Elena M. Andresen, Ph.D., is a Research Health in Gainesville, FL, and Professor and Chief of the Department of Epidemiology and Biostatistics at the University of Florida.