Mental health care for the caregiver.

People with Alzheimer's disease are not the only ones who suffer from its devastating effects. Family caregivers of Alzheimer's patients are also at risk for a range of psychosocial, emotional, and even physical problems. This population also falls victim to the science-to-service lag that plagues so many preventive efforts in the psychosocial arena, keeping proven interventions from making their way into everyday practice.

Numerous studies have shown that people caring for spouses or other family members with Alzheimer's disease suffer significant social isolation, stress, anxiety, depression, compromised immune responses, and a greater use of medication and psychotropic drugs. According to statistics from the National Institute on Aging, about 43% of caregivers for Alzheimer's patients meet the diagnostic criteria for clinical depression and the care-giving spouses of Alzheimer's patients suffer from depression at three times the rate of others in their age group.

Moreover, 15% of caregivers will die before their contemporaries, and elderly caregivers with a chronic illness themselves have a 63% higher mortality rate than their noncaregiving peers.

According to research using U.S. Census Bureau 2000 data, 70% of the estimated 4.5 million Americans with Alzheimer's live at home and are cared for by spouses or other family members. By 2040, unless a cure for Alzheimer's is found, there will be an estimated 300% increase in new cases among the 77 million baby boomers who will be at greatest risk for the disease.

Clearly, the need for reducing the mental health burden of caring for a person with Alzheimer's disease is not being met, although research has shown that doing so is not an impossible goal. For example, in a recent study at New York University of more than 400 primary caregivers, those individuals who participated in an enhanced support program made up of six sessions of individual and family counseling, a regular support group, and access to additional telephone counseling and support as needed, showed a gradual and significant decrease in depressive symptoms that was sustained over a 5-year period.

In contrast, those caregivers in the study who received standard assistance, including information and access to support groups and counseling, experienced an increase in depressive symptoms (Am. J. Psychiatry 2004;161:850-6).

The investigators hypothesized that the reduction in depressive symptoms experienced by the intervention group was related to participants' improved ability to voice their needs and mobilize existing family and social networks, as well as their improved caregiving skills and mechanisms for coping with problem behaviors of the patients.

Several interventions are also being investigated as part of the Resources for Enhancing Alzheimer's Caregiver Health (REACH) initiative that was established in 1995 by the National Institutes of Health.

To date, six REACH research projects at sites across the country have been funded through cooperative agreements with the National Institute on Aging and the National Institute of Nursing Research.

There is no guarantee that, even if these or other interventions prove to be successful, they will make it into standard practice any time soon. The reason, according to Richard Schulz, Ph.D., professor of psychiatry at the University of Pittsburgh and REACH project coordinator, is that "there is a disconnect between researchers who develop and test interventions, and front-line providers who are in charge of aging services programs. These two groups need to come together to jointly translate research-based interventions into the existing aging or health services networks.

"In order for this to happen both parties need to have incentives to come together, and such incentives currently do not exist."

In some states, however, efforts are underway to help move things along. Dr. Schulz said several state units on aging, such as those in Alabama and Tennessee, are implementing components of REACH as part of the Administration on Aging Alzheimer's Caregiver Initiative.

"Because the caregiving experience is so variable over time, an effective intervention requires assessment of specific needs at regular intervals," Dr. Schulz stressed.

In general, "individuals of low socioeconomic status and low education will benefit from education about the disease, the caregiving role, and available referral resources, while highly educated individuals typically access these resources on their own," he said. He added that most caregivers "benefit from interventions aimed at improving their emotional well-being by empowering them to take breaks from caregiving and engage in relaxation activities."

Finally, most experts agree that the increased availability of psychosocial interventions for Alzheimer's caregivers will be moot if the nation's care systems, such as Medicare, continue to buy into the acute care model of health coverage over a chronic care model that would put caregivers in the picture and support their public health role.

RELATED ARTICLE: Getting Help for Those in Need

Some of the greatest challenges in helping Alzheimer's family caregivers minimize their own mental health morbidity are helping them understand their increased risk for depression and anxiety, teaching them to see the symptoms of these conditions in themselves, and, most importantly, getting them to ask for help.

Unfortunately, the overwhelming responsibilities they face in caring for their loved ones often eclipse sufficient time for self-reflection and help-seeking.

For this reason, the call for help must often be made by someone outside the caregiver/patient relationship but intimately familiar with it. "Health care providers who see the patient on a regular basis are in the best position to detect depression in the caregiver," according to Dr. Schulz. "Typically, the caregiver will bring the patient to a physician's office at 6-month intervals. This office visit would be a good time to briefly assess the caregiver and provide or refer them to support resources."

In this vein, a program established by the Alzheimer's Association of Northern California and Northern Nevada, has developed a support network for caregivers that does not wait for them to make the first call.

Through the Living with Memory Loss program, a collaborative effort of the Association and the Health Resource Center at El Camino Hospital in Mountain View, Calif., participating family physicians and other community health care providers, including psychiatrists, psychologists, nurses, and social workers, alert program staff about caregivers they see in their practices who are in need of support services and who are open to being contacted by program staff about available community resources.

With the caregiver's permission, the provider will share their name and contact information with program staff, who will then call the caregiver to establish a relationship and provide health education and help connecting with community resources aimed at improving their quality of life.

Through Living with Memory Loss, caregivers have access to case managers, a comprehensive database of available services, a 24-hour telephone help line, support groups and educational workshops, and written materials and videotapes. The program provides caregivers with insight into the changing nature of Alzheimer's disease, as well as management tips and reassurance along the continuum of care and referrals to adult day services that offer appropriate structured activities for patients and respite for caregivers.

The Living with Memory Loss program was modeled on the Chronic Care Consortium, a federally funded program that partners with major managed-care providers to connect patients and physicians to community outreach organizations. It is funded by the nonprofit Health Trust of Santa Clara County.

BY DIANA MAHONEY

New England Bureau