Study confirms support reduces depression
Counselors keep caregivers stable, patients home
(Editor’s note: The National Council on the Aging in Washington, DC, recently awarded its Innovations in Independent Living 1997 Caregiving Award to six programs with new approaches to meeting the needs of the nation’s estimated 20 million caregivers. One program, which supports caregivers of Alzheimer’s patients, is profiled here. Two others, which support rural communities, were featured in our February issue, pp. 32-33.)
Nursing home admissions drop by more than 30% when caregivers of Alzheimer’s patients receive ongoing support from trained counselors. Not only that, but support significantly reduces the incidence of depression in caregivers, according to a study by the New York University Medical Center Aging & Dementia Research Center (NYU-ADRC) in New York City.
"The study proves that a short course of individual and family counseling, followed by the availability of counselors as needed over the entire course of the disease is a powerful intervention to improve the well-being of caregivers and patients," says Mary S. Mittelman, DrPH, associate professor at NYU-ADRC. "The important factor is ongoing support. The disease today is not the disease the person is going to have tomorrow. The coping skills and daily living skills change as the disease progresses."
The Caregiver Research Program has been in operation since 1987. The study is restricted to spouse-caregivers. "We do this because two-thirds of caregivers of Alzheimer’s patients are spouses, and also we felt the impact of the disease would be different for husbands and wives of Alzheimer’s patients than for other family members," she says.
Also, spouse caregivers are generally elderly themselves, often homebound, and may not be in optimal health. "Many elderly rely on their spouses for companionship and become socially isolated when their spouses become demented."
The caregiver program has three components:
1. Individual and family counseling sessions. "These sessions are task-oriented. Counselors educate caregivers on the nature of the disease, break problems up into manageable pieces, and make caregivers aware of options, such as formal and informal community services," Mittelman says. Counselors also help caregivers with patient behavior management and psychopharmacological treatments to manage dementia symptoms.
2. Support group participation. Caregiver support groups are led by family counselors work- ing with the program, counselors from the Alz-heimer’s Association, or other counselors known to caregivers. Groups provide a place for caregivers to express their feelings; group leaders provide continuous education about the disease and resources for information and referral.
3. Unlimited ad hoc consultation with counselors. "We did not originally include this as part of the program. However, as the study progressed, we became aware of the importance of availability of the counselor to the caregiver and the family for help as needed. This ongoing support recognizes the constantly changing nature of the disease."
The program begins with an individual counseling session in which caregivers tell the counselor which family members they like to include in future family sessions. This is followed by four family counseling sessions at a time and place convenient to the family. Caregivers must participate in a weekly support group following the last family counseling session.
Caregivers complete a battery of evaluation tools at the intake interview and at each follow-up interview. (For a list of the evaluation tools used, see box at right.) Follow-up interviews are conducted every four months for the first year and every six months afterward, whether the patient is still at home or in a nursing home. Caregivers can contact counselors for help between scheduled contacts. "If the patient dies, the caregiver receives two short unstructured interviews to maintain contact at six months and then 18 months after the death of the patient," Mittelman says. In addition, they receive two structured interviews using the battery of evaluation tools but eliminating the tools that deal with patient care, at one year and then two years after the death of the patient.
NYU-ADRC also publishes a regular newsletter for caregivers, which provides tips on patient care and information on advances in Alzheimer’s treatment. "We also send caregivers birthday cards. Caregivers often call to thank us for remembering them. The birthday cards are a symbol of the caring attitude we wish to convey to all out patients and caregivers."
In a study of about 200 caregivers, NYU-ADRC found that only 11% of caregivers in the treatment group placed patients in a nursing home in the first year after entering the study, compared with 23% of caregivers in the control group. "Treatment caregivers postponed nursing home placement considerably longer than control caregivers," she says. "They kept patients at home an average of 329 days longer than caregivers who did not receive the treatment group interventions."
Also, treatment group caregivers had less depression than control group caregivers. "A large number of caregivers, roughly 40%, had scores on the depression scale high enough to indicate possible clinical depression at intake. Caregivers in the treatment group were less depressed at follow-up. The average difference in change of depression between the treatment and control groups at 12-month follow-up was almost three points. The control group caregivers became more depressed, while the treatment group remained stable or improved," Mittelman says. "The bottom line is that individualized and family counseling and support can have a major impact on both the caregiver and the patient. Providing support over the entire course of the disease and including the family are essential."
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