Everyone Has Different Risks in a Family Caregiving Relationship

April 20, 2010

Providing care to a family member with dementia—without having formal training—frequently causes overwhelming stress and sometimes leads to breakdowns or depression. Yet the interventions designed to alleviate this stress are inconsistently effective, which can leave caregivers in isolation to deal with their stresses. Researchers from Penn State and the Benjamin Rose Institute recently concluded a study that explains why interventions aren’t always effective—which has implications for what can be done to improve the health and well-being of individuals in this situation.

Dr. Steven Zarit, professor and head of the Department of Human Development and Family Studies, and his colleagues studied the fifteen most common stressors for caregivers (including financial strain, behaviors of the person suffering from dementia, frequency of help from family and friends, and caregiving time demands). The findings, published in the March 2010 issue of Aging & Mental Health, indicate that the sixty-seven people in the study experienced radically different types and amounts of stress.

“Behavior issues are a common stressor but caregivers don’t always report that their family member has behavior issues. Some people feel more strain from the sense that they’ve lost a relationship with their family member, or because of conflict with siblings or other relatives. It’s different for everyone,” says Zarit.

There are about 4 million people in the country who are caring for a family member with dementia, Zarit says. Most often care goes on for five to seven years, but some caregivers take on this role for fifteen or twenty years.

The most common approach to helping caregivers is to teach them skills for coping with specific stressors, but many existing interventions target only one set of negative stressors. For example, an intervention might focus on helping people deal with behaviors of dementia by explaining why certain behaviors happen and how caregivers can change those behaviors. Down the line, this is expected to improve stress levels, after behaviors of dementia have changed.

The problem with this intervention is that it will only help caregivers who are troubled by behaviors of dementia. As Zarit’s study indicated, people experience a wide variety of stressors. A person coping with behavior problems may also have other difficulties not targeted by this single-stressor intervention, and some caregivers won’t be coping with behavior problems at all.

Another obstacle to improving well-being is that intervention programs are expensive to run. Many organizations are not able to offer comprehensive programs or can reach only a small subset of stressed caregivers.

“The majority of caregivers are living at home, with little or no help. The family has to pay the physical, emotional, and financial cost of the caring, which can be staggering,” Zarit says. “When the caregiver gets overwhelmed, it raises the probability of a breakdown in the care situation.” In very few cases, there are reports of neglect or abuse.

The study also revealed the difficulty in gauging exactly when an intervention is necessary. Most interventions operate as a preventive measure—they reach people before the stress becomes overwhelming. “Because stress profiles vary so widely, we just don’t know how much of a given stressor will hit a threshold and when we should make an intervention,” Zarit says.

Zarit says that a promising approach is to use what is called an adaptive intervention, which can be customized to address the varying risk factors of each individual. Some of these interventions exist in the real world, and have been proven successful. However, most of these interventions “stop short” in academic journals and never become used widely, says Zarit.

Even if interventions that are being used now aren’t always effective, there are options to alleviate stress and maintain well-being in a caregiving relationship. Some of Zarit’s past research has found that family meetings—which enlist the support of extended family—can improve well-being for both individuals in the relationship.

Another avenue, which Zarit is researching now, is the use of adult day care services. He’s seen positive feedback in his ongoing research, and he recommends day care to those who can afford it, even if only for a couple of days every week. Not only does adult day care give the caregiver a break, but it provides structured activities for the person with dementia.

Other researchers involved in Zarit’s study include Dr. Elia E. Femia, research associate in Penn State’s Department of Human Development and Family Studies; Kyungmin Kim, graduate student in Penn State’s Department of Human Development and Family Studies; and Dr. Carol J. Whitlatch, of the Benjamin Rose Institute, Cleveland, Ohio.

This work was funded by the National Institute of Mental Health and the National Institute on Aging.

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Editors: Steve Zarit can be reached at z67@psu.edu. For additional information, please contact the College of Health and Human Development Office of College Relations at 814-865-3831 or healthhd@psu.edu.