Relieving harmful stress and depression is the goal
A combination of counseling and support services may reduce the risk of depression in people caring for a spouse with Alzheimer’s disease, a new study says. The study, published in the May 2004 issue of the American Journal of Psychiatry, also suggests that giving spousal support might help people who are not clinically depressed, but who endure the chronic stress of caring for someone with the progressive brain disease.
Other research suggests chronic stress might damage the immune system and put caregivers at risk for diseases such as cancer. The study began with the experiences of two elderly counselors who had started providing informal help to spouses in the hallways of New York (City) University’s (NYU) Alzheimer’s unit.
"We noticed that caregivers often looked very upset and bewildered," explains NYU counselor Emma Shulman, who, at age 91, has plenty of life experience and a degree in social work to help her provide guidance to others. Shulman and her colleague, 84-year-old Gertrude Steinberg, began to offer advice to spouses who were caring for a partner with Alzheimer’s disease.
Those hallway-counseling sessions seemed to help, but epidemiologist Mary Mittelman, DrPH, and her colleagues wanted to measure the benefit in a scientific study. The team recruited 406 people who cared for a spouse with Alzheimer’s disease at home. Half were assigned to a normal Alzheimer’s support group and typically did not get formal counseling. The other half received intensive counseling services: Shulman, Steinberg, or one of the other geriatric specialists at NYU sat down with the spouse of an Alzheimer’s patient to assess the spouse’s situation and recommend services that might provide some relief.
The interventions provided by the counselors included help in arranging respite care to give the caregiver a break, or helping a spouse work through the complicated financial problems that crop up when a partner can no longer pay the bills or balance the checkbook. Another individual session and four family meetings followed that first counseling session. The NYU staff got calls every day from spouses dealing with problems that ranged from the physical demands of caregiving to financial problems such as how to pay for home health care, a service typically not covered by Medicare.
The researchers gave the caregivers a test that measured symptoms of depression at the study’s start and at intervals throughout the five-year study. They found that after one year, slightly less than 30% of people in the group that received the extra help had signs of depression, compared with 45% of the other spouses. The extra-help group also had fewer symptoms of depression overall. The positive effect lasted for more than three years after the initial counseling sessions. The benefit persisted even after a spouse died or had to enter a nursing home, according to the study.
Counselors can help caregivers minimize the behavioral difficulties caused by the disease. People with Alzheimer’s can become aggressive and lash out at a family member. "This is a very difficult disease to live with," Mittelman says.
Alzheimer’s disease can affect the entire family, but spouses can suffer the most, says Sidney Stahl, an Alzheimer’s expert at the National Institute on Aging, which helped fund the study. He urges caregivers to seek help not just with day-to-day problems, but also with the emotional difficulty of watching the disease destroy their partner’s mind.
"They’re literally not the same person," he says. "That’s got to be heartbreaking for the caregiver."
Tips for caregivers include:
- Learn all you can about the disease and caregiving techniques.
- Get help from family members, friends, and community services.
- Manage stress with relaxation techniques and time off.
- Get an annual physical and take care of yourself.
- Don’t feel guilty if you can’t do it all.