Research Stories

by Adelheid Fischer

Coal mines are dangerous places to work. So are the decks of commercial fishing boats. But the average American home is a dangerous work site as well, especially if you are one of the more than 15 million people who care for a sick or disabled relative.

During the 1990s, a landmark study by researchers at the University of Pittsburgh confirmed what healthcare workers had long suspected. The chronic stress of looking after a loved one exacts a heavy toll.

Researchers Richard Schulz and Scott Beach found that the caregivers were at far greater risk for an array of psychological maladies such as depression and anxiety. Worse yet, 63 percent of them also were more likely to die within the study's four-year period than their noncaregiving counterparts. Among the most challenging patients are those who suffer from dementia. Alzheimer's disease is the most well known.

David Coon

"Finding better ways to support family caregivers is a major public health challenge facing this country," David W. Coon says. Coon is an associate professor of psychology in the New College of Interdisciplinary Arts and Sciences at Arizona State University's West campus. He joined Schulz and a group of 16 researchers from around the country in the second phase of the continuing study. Their findings offer Alzheimer's caregivers and their charges real hope.

The study results appeared in the journal Annals of Internal Medicine in November 2006. The scientists tested a multipronged strategy for easing the distress of Alzheimer's caretakers. Participants in the study were racially and ethnically diverse.

More than 4.5 million Americans currently suffer from Alzheimer's disease. Of that total, 75 percent live at home and are cared for by family members. These unsung heroes perform a valuable service for their relatives. They also save the healthcare system billions of dollars annually.

But "they do so at considerable cost to themselves," Schulz points out. Caregivers are often aged spouses and older children. Their own health problems may be compounded by the demands of round-the-clock supervision for years on end.

The new study is called Resources for Enhancing Alzheimer's Caregiver Health (REACH II). But the work wasn't Coon's first foray into the public health arena of dementia.

Coon worked toward his doctorate at Stanford University during the early 1990s. As part of his studies, he participated in elder-related projects with his advisor and mentor, noted gerontology researcher Dolores Gallagher-Thompson. Coon first focused on developing mood-management strategies for people who were providing care to older adults with a chronic illness. Over time, he began to zero in on the problems that are particular to those caring for relatives afflicted with dementia.

As part of his training, he logged long hours with Alzheimer's patients and their caregivers in both clinical and community settings. Their stories were key to his decision to specialize in this emerging public health concern.

"In An Intimate History of Humanity, Theodore Zelden said something like ‘Courage is the willingness to face the unexpected,'" Coon says. "I often think of Alzheimer's disease caregivers as that. They're people who are extremely courageous because they have no idea what's coming next. Healthcare providers and physicians will reassure you that they will do everything they can. But they can't tell you what tomorrow is going to look like exactly for you. These caregivers and their families get up every day and face the unexpected. They changed my life."

The ASU professor's previous research and professional experience confirmed the need for a multipronged intervention strategy. Caregivers experience many different kinds of problems.

For example, Coon points out that self-care for caregivers often takes a back seat to the more immediate concern of ministering to a stricken family member. They rarely get enough rest and exercise. And planning a night out with friends or scheduling regular medical checkups gets shoved to the side. As a result, caregivers perceive themselves as less healthy. They report greater feelings of stress and social isolation than their noncaregiving counterparts.

Caregivers routinely find themselves overwhelmed by anger. Their frustration grows as problematic behaviors increase. Some patients are defiant, even dangerous. Others wander obsessively. Many of those with dementia cannot bear even the smallest deviation from routine without becoming agitated or combative.

The REACH II study identified five measures that could be used to assess caregiver well-being. Those measures were depression, caregiver burden and stress, attention to personal health needs, social support, and coping with the problem behaviors of their Alzheimer's charges.

The study was done at five sites across the country. The team recruited 642 people who were caring for a relative with dementia. Participants were drawn from three different racial/ethnic groups: Caucasian, African-American, and Latino.

Within each group, some participants were randomly assigned to a control group. Those people received a packet of basic educational materials discussing the disease of dementia. Basic tips on caregiving and lists of community resources were provided. The researchers followed up with two 15-minute phone calls. Control group members also got an invitation to a dementia-caregivers workshop at the six-month conclusion of the study.

The second group participated in one-on-one sessions with certified interventionists. They learned more about dementia and its symptoms. In home visits, interventionists also used tools such as role playing. They helped caregivers brainstorm ways to manage their loved ones' problem behaviors.

Members of this group also learned how to intercept their own negative emotional responses and reframe them in a more helpful light. They practiced simple, but effective, on-the-spot breathing techniques for lowering stress. And interventionists made use of the telephone. They conducted individual conversations as well as structured support sessions with small groups of caregivers.

The results were strikingly different between the control group and the subjects who received more diverse and sustained intervention. For example, the overall rate of clinical depression was much lower among those who participated in the multiple interventions.

There also were marked differences among the racial/ethnic groups. The scientists say this suggests that interventions should be tailored to the specific needs of different communities.

Latino caregivers experienced the greatest decrease in depressive symptoms. They also reported the biggest reduction in the problem behaviors among their loved ones. Caucasians registered the biggest gains in the area of social support. The most positive outcomes for African-American caregivers were in the areas of reducing caregiver burden and improving self-care.

Coon and his colleagues explain that such multilevel interventions can be mastered by individuals with a bachelor's degree in psychology, social work, nursing, occupational therapy, or other related disciplines. The researchers currently are evaluating the costs for the program. They are looking at money saved in fewer trips to the hospital emergency room or delayed admission to pricey skilled-care nursing facilities.

Other benefits are more difficult to quantify. For example, how is the caregiver's well-being enhanced as they perform one of life's most challenging jobs?

"Most caregivers step up to the plate because they care about their loved one," Coon explains. "It's frustrating, sad, and hard to watch someone that you care about disappear in some capacities before you. But caregivers can also talk about what they learn about themselves and learn about that relationship. They wouldn't choose to have the experience. But when you slow the person down and you help them with their stress, they can also talk about the fact that there are good moments."

Coon is looking at ways to seed some of the results of this research on the ground in Arizona. He plans to examine the effects of caregiving on Latino and Anglo adults who are themselves suffering from health complications related to Type 2 diabetes, high blood pressure, or obesity. Other work will look at Latino, African-American, and Anglo men with prostate cancer and their female partners.

"Caregivers are the hidden patient," Coon says. "They're notorious for getting their loved ones to the doctor. But what about themselves? They are dedicated people. That doesn't mean they don't need a break, doesn't mean that they don't need pleasure in their lives beyond just what they get from giving to someone they care about. There's something great about giving. But sometimes we all need to sleep, need time by ourselves, or need to connect with people who are important to us."

ASU research on caregivers is supported by the National Institute on Aging, National Institute of Nursing Research, Arizona Alzheimer's Research Consortium, ASU's Multidisciplinary Grants in Aid, and the National Cancer Institute. For more information, contact David Coon, Ph.D., Social and Behavioral Sciences Department, ASU West campus, 602.543.6064. Send email to David.W.Coon@asu.edu