Circles of Care

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image by Ilana Kohn

There are roughly 5 million people with Alzheimer’s disease in the United States, and as the baby boomers age, experts predict that this number will more than triple by 2050. People live anywhere from 3 to 20 years after the onset of Alzheimer’s symptoms and eventually need total, around-the-clock care. Ever more spouses and children will be caring for a loved one as he or she slowly disappears before their eyes.

A nationwide study of caregivers released in 2006 by the National Alliance for Caregiving documented the fact that caregivers “find themselves in a downward spiral of health that worsens as a result of giving care.” A 1999 study by Richard Schulz and Scott Beach of the University of Pittsburgh found that elderly, caregiving spouses had a 63 percent higher mortality rate than their non-caregiving peers.

“Dementia caregiving is [especially] difficult for the caregiver because the people aren’t often aware of how much help they need,” says Dolores Gallagher-Thompson, director of Stanford University’s Older Adult and Family Center. “As the disease progresses, they can’t even recognize the caregiver anymore, which can be a huge psychological burden and stress.”

Fortunately, new research indicates that with the proper help, caregivers can make significant strides in their ability to care for their loved ones–and maintain their own mental health. For instance, a study published in 2006 by Mary Mittelman, a director of New York University’s Institute for Aging and Dementia, reported that providing caregivers with support groups and one-on-one counseling can delay their need to place an Alzheimer’s patient in a nursing facility by as much as a year and a half.

As part of a study led by Schulz at the University of Pittsburgh in 2006, caregivers met with counselors about a dozen times over six months to learn relaxation techniques and work on ways to give better care, such as learning how to identify and respond to the problem behaviors that come with Alzheimer’s disease. Study participants not only benefited from the training almost immediately, they were also more likely to accept their loved one’s passing as a positive change.

“The study showed that things you do for caregivers while they’re still caregiving may carry over and benefit them afterwards,” says Schulz. “Anything you can do to ease the burden of caregiving before death also has benefits for easing bereavement and complications and grief after death.”

The Savvy Caregiver Program offers help specifically to people caring for relatives suffering from Alzheimer’s or other forms of dementia.

Kenneth Hepburn, who is now associate dean for research at Emory University’s school of nursing in Atlanta, developed the six-week training program while he was working at the University of Minnesota. It has two main objectives, he says: “First, we want to help people realize they have a goal for doing this kind of work, to make them feel comfortable with it; second, to make people aware that although they may mostly see the losses brought on by the disease, they should also see what is still available to the person, and to work with that.”

Each class, Hepburn explains, starts with a question, such as “How does Alzheimer’s affect thinking?” or “How does Alzheimer’s affect emotions?” The caregivers learn what to expect as the disease progresses, and they develop useful responses to cope with what can be unpredictable and even unpleasant behavior in their spouse or parent.

The Alzheimer’s Association–a national health organization dedicated to finding prevention methods, treatments, and an eventual cure for Alzheimer’s–recently has begun offering the Savvy Caregiver Program across the West. The first class that met in Palo Alto, California, enjoyed the program so much that the caregivers planned a six-month reunion to catch up and continue to support each other.

The San Francisco-based Family Caregiver Alliance (FCA), one of the nation’s oldest caregiving resource centers, offers many classes, some similar to the Savvy Caregiver Program, along with resources for dealing with more specific challenges, from negotiating financial arrangements with lawyers to handling a family member who isn’t pulling his or her weight. The FCA also offers online support groups and phone workshops, and maintains an extensive list of fact sheets on its website,

“People need a safe place to express their ambivalence about caregiving,” says FCA program director Donna Schempp. “It’s OK to be angry, sad, and impatient. It’s OK to not be a perfect caregiver. It’s OK to get help.”

Excerpted from Greater Good (Fall 2007), published by the Greater Good Science Center at the University of California, Berkeley. Subscriptions: $20/yr. (4 issues) from Greater Good, 2425 Atherton St., #6070, UC Berkeley, Berkeley, CA 94720;

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