An intervention tailored to meet individual needs and address the multifaceted aspects of caring for a relative with dementia can improve caregivers' quality of life and reduce the likelihood they will develop depression, a new study has found.
The large multisite trial, titled Resources for Enhancing Alzheimer's Caregiver Health II (REACH II), was coordinated by the University of Pittsburgh and is the first randomized, controlled trial to look systematically at the effectiveness of a multicomponent caregiver intervention provided to ethnically diverse populations.
In REACH II, the researchers found the intervention was effective across the range of racial and ethnic groups studied. The most significant improvements were seen among Hispanic and white caregivers. In African Americans, the intervention was significantly effective overall, however, within subgroups the intervention was only significant in the subgroup of spouse caregivers, not among caregivers who were caring for a relative other than their husband or wife.
The intervention was based on findings from the first phase of the study, REACH I, in which the team tested multiple caregiver interventions to identify which were the most promising. In that study, researchers found that different caregivers experienced similar problems at differing levels of intensity. As a result, they recognized a need to develop an intervention that could address the most troublesome problems for each individual caregiver.
Results of REACH II appear in the November 21, 2006, Annals of Internal Medicine. The work was funded by grants from the National Institute on Aging (NIA) and National Institute of Nursing Research (NINR).
REACH II enrolled 642 people who were primary caregivers for a relative with Alzheimer's disease or a related disorder at sites in five U.S. cities. Hispanics, whites, and African Americans were evenly represented. More than 200 participants in each ethnic group were randomized to receive either the study intervention or a minimal intervention designed as a control.
Providing Focused Intervention
Over the course of the study, trained project staff (with at least a bachelor's degree and completion of specialized project training) visited the caregivers in the intervention group at home nine times, talked with them during three half-hour telephone calls, and offered five structured telephone support sessions.
Project staff employed strategies with the caregivers that included information sharing, instruction, role playing, problem solving, skills training, stress-management techniques, and telephone support groups. Based on the intensity with which each caregiver experienced problems in five key quality-of-life areas, the intervention was tailored to meet his or her individual needs, providing the skills necessary to cope better with the stress of giving round-the-clock care and manage troublesome behaviors in both the patient and himself or herself.
Before the services began and six months later, researchers assessed caregivers' quality of life overall and in five quality-of-life areas: depressive symptoms, burden of caregiving (such as the level of stress), engagement in self-care activities (such as getting rest or seeing a doctor when needed), level of social support available, and problem behaviors exhibited by the person with dementia.
The investigators also measured the prevalence of major depression among the caregivers and collected data on whether the care recipients had been placed in institutions during the six-month study period.
Those in the control group received a packet of dementia education materials, and staff completed two brief “check-in” telephone calls.
Family Provides Most Care
Approximately 4.5 million patients with Alzheimer's disease currently live at home in the United States. The study noted that previous surveys and clinical research suggest that about 75 percent of those patients are cared for by family members, according to the researchers.
“Caring for a loved one with dementia presents a number of challenges that can seriously compromise the caregiver's quality of life,” Richard Schulz, Ph.D., a professor of psychiatry at the University of Pittsburgh School of Medicine, and REACH II's corresponding author, said in a press release. “For the millions of Americans who care for a loved one at home, an intervention that can improve their quality of life and lessen the burden of caregiving can make meaningful differences in their ability to better care both for themselves and their loved ones.”
Intervention Spans Boundaries
Caregivers of all ethnic backgrounds experienced significant improvements in quality-of-life measures. Large and clinically important improvements were found for 45 percent of Hispanic caregivers, 40 percent of white caregivers, and 28 percent of African-American caregivers in the intervention group, compared with 7 percent, 13 percent, and 11 percent among Hispanics, whites, and African Americans, respectively, in the control group.
For Hispanics, the intervention was most effective in reducing depressive symptoms in caregivers and improving their ability to manage problem behaviors in the patient. Among whites, the greatest impact was in the area of social support, with significant increases in number of social contacts with relatives or friends, and increased satisfaction in social support overall. Among African Americans, there were positive effects in reducing caregiver burden and improving self-care among spouse caregivers.
The research also showed that following the program, the rate of major depression (measured using the Center for Epidemiologic Studies Depression Scale) was significantly lower among caregivers in the intervention group compared with those in the control group (12.6 percent and 22.7 percent, respectively). The rate of institutionalization of loved ones being cared for was lower in the intervention group than the control group (4.3 percent vs. 7.2 percent), but this difference was not statistically significant.
The researchers also collected data on how study participants viewed the intervention. Caregivers in the intervention group reported that taking part in the program helped them feel more confident in working with the patient, made life easier for them, improved their ability to care for the person with dementia, improved the patient's life, and helped them keep the patient at home—potentially delaying the admission of the patient to a skilled nursing facility. Many in the control group also said they benefited“ some” or “a great deal” from participating in the study, suggesting that even minimal support and attention may be helpful to caregivers.
“Family members and friends provide most of the care for millions of people with dementia who live at home, often facing challenges that can seriously compromise their own quality of life,” noted NIA Director Richard Hodes, M.D. “REACH II tells us that a well-designed, tailored intervention can make a positive, meaningful difference in caregivers' lives.”
“This important research demonstrates that the intervention can readily benefit the diverse communities of caretakers who provide care to individuals with Alzheimer's disease,” said NINR director Patricia Grady, Ph.D. “It also underscores the substantial cost that caregivers face—financially, physically, spiritually, and emotionally—and helps to illustrate why caregiving research is a priority for NINR and NIA.”
Sidney Stahl, Ph.D., chief of the Individual Behavioral Processes Branch within NIA's Behavioral and Social Research Program, added that based on the current study, the REACH program looks promising for widespread community use, especially if the outcomes are replicated by other researchers and the program proves cost-effective when compared with alternatives.
An abstract of “Enhancing the Quality of Life of Dementia Caregivers From Different Ethnic or Racial Groups: A Randomized Controlled Trial” is posted at<www.annals.org/cgi/content/abstract/145/10/727>.▪