Publication Date: Wednesday Feb 11, 1998

Project reaches out to caregivers

Caring for a loved one who suffers from memory loss is no easy task. The stress levels endured by primary caregivers can, at times, be overwhelming.

Fortunately, support is available through Resources for Enhancing Alzheimer's Caregiver Health (REACH), a five-year project aimed at understanding the stress levels that caregivers endure, as well as the problems and process that caregivers face.

The study is being conducted by the Older Adult and Family Center, part of the Veterans Affairs Palo Alto Health Care System and Stanford University School of Medicine.

Funded by the National Institute on Aging, REACH is a collaborative effort with five other intervention sites located throughout the United States.

Caregivers face a wide assortment of problems.

"A big one is time management," said Dr. Dolores Gallagher-Thompson, principal investigator of the REACH project. "They all feel extremely stressed. It's like burnout on a job. That's how a lot of them describe it."

When people learn that their loved ones have Alzheimer's, they often will go to support groups to learn more about what is ahead and get ideas for coping. But, Gallagher-Thompson said, as the disease advances, they often get more stressed and feel they need more help than they can get in a support group.

"Many of the caregivers are daughters, people in their forties, who have children of their own that they're raising," said Gallagher-Thompson. "A lot of the stress comes from being caught in the 'sandwich generation.' Sometimes we even have daughters caring for both parents."

There is also financial stress on families because Medicare provides only limited coverage for dementia, Gallagher-Thompson said. Families often end up picking up the balance of the cost of services.

The REACH program is designed to help women cope with the stress associated with caring for a family member with memory loss. Participants must be women over the age of 21 who are living with the dementia victim. They must also be either self-identified Hispanic or Caucasian women.

"We will also be looking at the situations of these women," said Dr. David Coon, REACH's project manager. "Are they daughters or spouses? Are they working or unemployed? Do they have health concerns of their own? Women might have different needs depending on their circumstances. So it's possible that we may be able to better understand people in these situations and find out which intervention works best for whom."

To do this, women are randomly assigned to three groups: telephone support services, classes on coping with caregiving, and a support group. Each intervention occurs weekly for 10 weeks, and then once a month for the next eight months. Basic educational information about dementia, caregiving, and helpful resources are distributed to each group. Participants are interviewed prior to beginning the study, and then four times throughout the project, which lasts 18 months.

Caregivers who receive telephone support get a chance to talk one-on-one to a trained REACH staff member about their caregiving situation. Since it is always the same person who calls, women tend to develop a relationship with someone who understands their situation. "It can be conceptualized as a friendly visitor program," said Coon.

Classes on "Coping with Caregiving" comprise about eight women. Led by a trained staff member, they are designed to teach a specific coping skill that will help women manage their caregiving situation. Skills include relaxation training and replacing negative thoughts with more adaptive ones.

The support group is an opportunity for caregivers to come together and share their concerns in a group format. Participants are encouraged to bring up incidents that occurred during the week, and the group is asked to lend advice.

"We encourage them to help each other with suggestions. For example, how have group members dealt with their family member wandering off? We step in to clarify if the suggestions aren't good ones," said Gallagher-Thompson. "It's a safe place to discuss feelings.

"These women have mixed feelings--love one day, resentment the next," she said. "Why isn't my sister doing more? What's going to happen to my kid's college fund? Their family members can be critical of such emotions. So we encourage empathy and understanding that feelings are normal, even negative feelings." 

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