Alzheimer's Association chapters and similar organizations offer support groups specifically designed for caregivers who speak Spanish, Vietnamese, Chinese or other languages. But according to psychologist Dolores Gallagher-Thompson, PhD, these well-meaning efforts often fail.
"It takes a lot to establish a support group in a different language," says Gallagher-Thompson, director of the Stanford Geriatric Education Center and professor of research in the department of psychiatry at the Stanford University School of Medicine. "Then they offer the group, and hardly anyone comes."
That's because caregivers from racial- and ethnic-minority communities often have a taboo against discussing problems in public, says Gallagher-Thompson. Now she and other psychologists are probing attitudes about caregiving in different cultures and developing more effective ways to support caregivers who may face even more stress than their white counterparts.
Stress is an enormous problem among caregivers in general, says Gallagher-Thompson, a member of the APA Committee on Aging. But for caregivers in minority communities, the problems can be even more intense. One reason she sees: There's often an expectation in these communities that elders will be cared for at home.
"When Caucasian caregivers feel at-home care is too much, they use a nursing home," she says.
But for Chinese-American caregivers, for example, a key concern is saving face.
"Revealing weaknesses to other people shows there's something wrong with your family," she explains. "And because there's such a strong tradition of reverence and respect for ancestors, the last thing you want to do is dishonor your ancestors by bringing shame to the family."
To get past Chinese caregivers' reluctance to seek help via support groups, Gallagher-Thompson and colleagues created an in-home skills-building intervention. Rooted in cognitive-behavioral principles, the 16-week program taught caregivers such coping skills as managing an older relative's wandering and other disruptive behaviors and asking for help from other relatives most effectively.
In a 2007 study published in the American Journal of Geriatric Psychiatry (Vol. 15, No. 5), they showed that caregivers who received the intervention had less stress and depression than those who received telephone support.
Of course, in-home interventions are expensive. To make them less pricey and bring them to a wider audience, Gallagher-Thompson has created a workbook and Chinese-language DVD that features actors illustrating effective and ineffective coping strategies.
In a study in press at Aging and Mental Health, she found that caregivers who used the DVD had considerably less stress than those who used a DVD that simply educated viewers about Alzheimer's disease. (Gallagher-Thompson's DVD is available through the Stanford Geriatric Education Center: http://sgec.stanford.edu.)
For Latino caregivers, says Gallagher-Thompson, the problem is often low health literacy. "Most of what the Alzheimer's Association and other major groups offer is written in too high a reading level for the average Latino family," she says.
Her solution is a format called the fotonovela, which uses photos and Spanish-language captions to illustrate coping strategies.
"It's a culturally acceptable medium for transmitting health information," says Gallagher-Thompson, noting that similar books are already available on such topics as diabetes, heart disease and HIV prevention. DVD versions would not be as useful, she says, because "at this point, DVDs are not that commonly used among middle-aged and older Latinos."
Other psychologists are working to make caregiver support groups more palatable. Many support groups just aren't culturally acceptable to many people, even when they are open to the idea of attending a group, says David W. Coon, PhD, a psychology professor in the College of Nursing & Healthcare Innovation at Arizona State University in Phoenix.
In addition to linguistic barriers, he says, cost, location and a lack of understanding of cultural issues such as differences in family decision-making can keep participants away.
Coon is trying to make effective interventions more palatable to both caregivers and the community-based organizations that offer them through his Assisting Latino Caregivers Project. The project adapts the tools that he, Gallagher-Thompson and others developed as part of the multisite Resources for Enhancing Alzheimer's Caregiver Health (REACH I and II) studies. Designed to increase caregivers' skills and offer support, the REACH II intervention relied on 12 home visits by trained staff plus telephone support over six months.
"We are trying to determine if we can take the tools we've seen are effective and make them more appealing to community-based organizations by making them more cost-effective," says Coon. The more condensed approach he has developed consists of four group meetings, with telephone coaching in between to reinforce the lessons learned. Targeting Latino caregivers of older people with memory loss, the free intervention offers education, skills building and support while giving participants the chance to meet others facing similar challenges.
Although the research is ongoing, says Coon, the preliminary results are promising and suggest that the short version may prove just as effective as the full-blown REACH I and REACH II intervention in improving well-being and increasing effective coping strategies.
With another initiative, the Caregiver Health and Wellness Project, Coon is interviewing Latino and white caregivers with Type-2 diabetes, high blood pressure or weight problems to see if he should add another module to his intervention.
"We know that stressed caregivers are at risk for increased illness," says Coon, noting that research shows they're also at greater risk of death. "We're trying to understand from them how their caregiving impacts their self-care for their own conditions and vice versa." The goal of the ongoing project is to create "one-stop shopping" that will allow busy caregivers to learn how to better care for themselves while caring for others, says Coon.
Of course, some caregivers may deny that they're stressed at all. That's especially true in the African-American community, says T.J. McCallum, PhD, an associate psychology professor at Case Western Reserve University in Cleveland.
"You're not going to get as much social support for essentially complaining about caring for your loved ones," he says.
But just because African-American caregivers say they're not stressed doesn't mean everything's OK, McCallum emphasizes. While they won't say they're suffering distress, their bodies tell a different story.
In a 2006 study published in the American Journal of Geriatric Psychiatry (Vol. 14), McCallum found that African-American and white caregivers scored about the same on depression and stress scales. However, when it came to levels of cortisol in their saliva—an indicator of stress and other chronic conditions—the African-American caregivers scored significantly higher.
For psychologists and others working with African-American caregivers, the lessons are clear: "We can't just hand someone a measure or ask them how they're doing and take it at face value," says McCallum. "We have to dig a little deeper."
In addition, clinicians should keep in mind that caregiving is likely to be just one of the stressors African-Americans are facing, says McCallum, who runs ethnically sensitive stress reduction classes for caregivers.
"African-American caregivers tend to have fewer resources and to be in life situations that might have other stressors, so that the caregiving isn't the highest-priority stress," he says, adding that white caregivers in similar situations may have similar reactions. "It's oftentimes a class distinction as much as an ethnicity or race distinction."
Clinicians should also be careful about the language they use with caregivers from different races or ethnicities, says psychologist Mindi Spencer, PhD, an assistant professor in the department of health promotion, education and behavior at the University of South Carolina in Columbia.
American Indian caregivers may not view caregiving as a problem, says Spencer, who has collaborated on a project with a tribe in North Carolina.
While the literature is not well-developed, she says—partly because it's so difficult for researchers to gain entrée into tribes—it seems that the extended clan structure of American Indian families gives them a different attitude toward caregiving.
Clinicians, she says, should be "careful not to talk about the 'burden' and to be more sensitive to older adults' important role in the family dynamic."
The implications of her own and others' research? "We're trying to expand the understanding of caregiver stress and coping to include more of a cultural lens," she says. "We emphasize that you can't have a one-size-fits-all approach when it comes to intervention strategies."
Rebecca A. Clay is a writer in Washington, D.C.