Program offers early support for caregivers
Care coordinator intervenes before crisis arises
(Editor’s note: This is the third and final part of a three-part special report on Alzheimer’s disease. In our September issue, we focused on improving quality of life for Alzheimer’s patients. The October issue focused on supporting families, recognizing depression, and preventing misdiagnosis. This month, we highlight a physician referral care coordination program. Look for articles on rural support programs and the benefits of alternative therapies in future issues of the newsletter.)
Primary care physicians have a unique opportunity to serve as an entry point for caregivers to community services. Unfortunately, few primary care physicians have the time or the experience to link Alzheimer’s patients and their families with those services.
"I had a feeling that physicians would prefer to co-manage their patients with service organizations in the community, but may not know how to go about it," says Richard H. Fortinsky, PhD, associate professor of health care policy at Case Western Reserve University School of Medicine in Cleveland. "I did a survey of Cleveland area physicians and found that they are interested in sharing the care of their patients. Physicians don’t want to own their patients, but they don’t know what services are available."
He used information from a 1994 survey of Cleveland-area physicians to select physicians to include in the program. Fortinsky mailed an invitation, information about the program, and referral forms to any physician that reported having six or more dementia patients in their practice.
Fortinsky teamed up with the Cleveland Area Chapter of the Alzheimer’s Association to develop the Alzheimer’s Service Coordination program with the help of a research grant from the national office of the Alzheimer’s Association in Chicago.
"It’s an exciting program for the Cleveland chapter because for the first time, we’re reaching family members before they are in the middle of a crisis," says Joan Lavelle, BA, director of education services for the Cleveland chapter.
The program is relatively simple. If a patient or caregiver expresses concern about dementia during a routine office visit, the physician fills out a referral form and faxes it to the service coordinator at the Cleveland area chapter who telephones the caregiver and reviews the issues checked on the referral form. The service coordinator then develops a care plan that she sends to the caregiver and the physician. The service coordinator follows up by telephone on a routine basis to review the plan and update it as necessary.
"I usually call caregivers twice in the first month after they receive their care plan," Lavelle says. "After the first month, I’ll call once a month until things seem stable and then once every two months unless a crisis occurs."
The program has been enrolling Alzheimer’s patients and their families for just over a year. To date, a total of 45 caregivers have been referred by a total of 20 physicians. "I’ve got over 100 physicians on my list of physicians who said they would refer to the program, but only 20 have used the program so far," Fortinsky says. "It’s very hard to keep the program in the consciousness of physicians. It’s one of the challenges of doing a program in which the physicians are not connected to each other by a network."
Each of the 100 physicians who expressed an interest in the program was given 20 referral forms. "Every month we send the physicians a postcard imploring them to use the referral program. We’ve also worked with the physicians’ office assistants to get the referral forms into the patient’s chart before the office visit," Fortinsky explains.
The form helps Lavelle focus on areas of most concern to the caregiver. Fortinsky designed the form for the physician to fill out during a routine office visit. Lavelle says the form gives her a "solid base" to discuss sensitive issues with caregivers. Issues covered on the form include:
• patient driving;
• patient disorientation;
• safety issues in the home;
• wandering;
• difficult behaviors;
• communication problems;
• lack of family support;
• what to expect next;
• services to help keep patient at home;
• need for change in living situation.
"It’s a strong statement for Joan to be able to tell caregivers that she knows what they discussed with their doctor," Fortinsky says. It helps the caregiver accept the service plan she puts together because the plan is driven by concerns expressed by the caregiver and patient to the doctor. It really seems to improve acceptance of the care plan."
Lavelle says financial and legal issues are especially important to address early on. "Too many times, families end up in an emergency room with a dementia patient, and they don’t have legal guardianship or power of attorney so there is no way for the family to legally direct the care of the patient," she says. "Too many times, patients aren’t diagnosed with Alzheimer’s until they are three or four years into their illness. By then, the caregiver is already on the fast track, and it’s too late. They’re trapped, and it’s difficult for them to adjust."
"Physicians rarely address legal and financial issues with patients and their families. It’s one of the pieces that’s vital for case managers to introduce," Lavelle says. "For example, if I can get the right agency into the home to provide necessary services early enough, I can help keep the patient at home without bankrupting the family."
The good news
Although Fortinsky remains frustrated by the small number of physicians using the referral program, he notes that for the 20 physicians who have referred into the program, it has worked very well. "We’re capturing caregivers very early in their careers as caregivers. that’s the main benefit of getting referrals through physicians," he says. "Over half of the caregivers referred into the program were referred within a year of getting a diagnosis of Alzheimer’s. Caregiver research indicates that normally caregivers are already in a support group before they are enrolled in a service coordination program."
One of Fortinsky’s goals is to find out which services are most useful to caregivers. Some feedback already gathered from the Alzheimer’s Service Coordination Program includes:
• Of the 45 caregivers in the program, 27 received educational material as part of their service plan. Service coordinator follow-up calls confirm that all 27 not only read the materials but passed them on to other family members.
• Of the 45 caregivers, 23 had enrollment in a support group as part of their service plan. Only three were attending the support group at the time of service coordinator follow-up.
"I think we need to broaden the definition of what we mean when we talk about caregiver support services," Fortinsky says. "Caregivers face all kinds of barriers to care, but with reading materials they get many of the benefits of a support group, and the only barrier is perhaps finding the time necessary to read through materials."
Cleveland-area physicians also have been educated and supported by the program, Lavelle says. "Physicians are starting to realize the stress on caregivers caused by patients who are up wandering all night. One physician even reported that his patients who were referred to the program were calmer and progressing better than patients not referred to the program."
If she could change one thing about the program, Lavelle would meet with families face-to-face rather than contacting them by telephone. "They don’t have the face-to-face comfort of knowing who I am. Unfortunately, time doesn’t permit face-to-face visits."
The program costs absolutely nothing for either the physician or the families. "This is a very cost-effective program. I can give the family the tools to empower them to handle their situation over the phone, and I can serve a large population that way," she says.
However, some physicians are reluctant to refer to the program. "Physicians keep asking how we can do this for free. Physicians with managed care plans seem to believe that the plan will handle all necessary care coordination. They don’t realize that few plans are able to help on all these levels, especially early on before high costs or a medical emergency gets their attention," she says.
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