The spouses of Alzheimer's patients often experience extraordinary psychological stress, but a new study by NYU School of Medicine researchers shows that a six-session counseling and long-term support program substantially eases the depression of people caring for a loved one with the devastating brain disease, and that the mental health benefits apparently are long lasting.
The study is published in the May 1, 2004, issue of the American Journal of Psychiatry. It is part of the NYU Spouse-Caregiver Intervention Study, a longstanding research endeavor devoted to testing interventions to improve the mental health and well being of Alzheimer's caregivers, providing a model of support for families as they struggle to care for a loved one with Alzheimer's
“The intensive intervention in this new study was very brief—only six sessions—and yet that seems to have had a very long lasting effect,” says Mary Mittelman, Dr.P.H., the lead author of the study who is Research Associate Professor in the Department of Psychiatry, and Director of the Psychosocial Research and Support Program at the NYU School of Medicine’s William and Silvia Silberstein Institute on Aging and Dementia. “I explain it as a snowball effect, whereby the benefits that started in the counseling sessions led to changes that many families made in the way they interacted afterwards.”
Alzheimer’s disease is a tragedy not only to its victims, but also to their caregivers, says Dr. Mittelman. Spouses, who are usually the primary caregivers, often experience stress, depression, and other mental health problems as a result of the continuing and demanding levels of care required by patients with Alzheimer's, the most common form of dementia affecting people over 65.
A total of 406 caregivers were enrolled in the study, which began in 1987,and were divided into two groups. Half the caregivers, the control group, received the usual counseling—sessions provided on an ad-hoc basis upon request. The other half, a so-called enhanced treatment group, was given three additional types of counseling: two sessions of individual counseling, four sessions of counseling with their family, and then weekly meetings with a support group of fellow caregivers. A key feature of the enhanced group is that each of its members was served by a single counselor for the duration of the study, to ensure continuity.
After one year, 29.8 percent of caregivers in the enhanced treatment group had symptoms of clinical depression, compared with 45.1 percent of those in the control group. Three years later, caregivers who received enhanced therapy were found to still exhibit fewer symptoms of depression on average than those in the control group. This was true even for caregivers whose spouses had been sent to a nursing home, known to be a highly stressful event for caregivers, or who had died.
Dr. Mittelman emphasizes that the particular value of this study is that it follows the progress of caregivers well beyond their intensive counseling period. “Many of the effects of these therapeutic interventions are not felt immediately,” she says. “In fact, the two groups of caregivers began to show significant differences in their depression symptoms only after a year had gone by since they enrolled in the study.”
The use of multiple types of coordinated therapy seems to be one of the most important factors in decreasing depression among caregivers, explains Dr. Mittelman, since each form benefits the caregiver in a different way. Another important aspect of the study, she adds, is that the counseling was tailored to the particular coping challenges that each of the caregivers and their families were dealing with. For instance, even when caregivers have supportive family networks, there can still be communication difficulties between caregivers and their adult children that require counseling to resolve.
“Caregivers often ask too much, ask too little, or don’t ask at all, of their adult children, while children can offer too little, offer the wrong things, or impose themselves in ways that are upsetting,” says Dr. Mittelman. “And adult children and other family members are not really aware of the extent to which, as the illness progresses, the person with dementia becomes less and less of a companion to the caregiver. They don’t think ‘Mom must be lonely,’ because they see Dad there.”
The study shows that after about five years, the levels of depression among caregivers in the control group dropped to that of caregivers in the enhanced group. Nevertheless, the study points to a significant improvement in quality of life for the enhanced group during that five-year period. “For a person who’s 80 years old and depressed,” notes Dr. Mittelman, “five years is a long time.”
Dr. Mittelman said she hopes that the study will encourage more doctors to refer caregivers to counseling and support programs, and will increase the availability of these types of intensive interventions. “More and more people are living to an age where Alzheimer’s disease is likely to afflict a spouse,” she says, “so I think that it’s important for physicians to know that such counseling programs have proven value.”