The Amazing Power of Support Groups
When Alzheimer's caregiving has you at wit's end, a support group can help you gain perspective and a sense of connection.
For anyone involved in Alzheimer's caregiving, a support group is a necessity. Alzheimer's support groups turn caregiving an experience that leaves most people feeling frustrated, depressed, and isolated into the sole criterion for membership. People facing similar challenges can come together with dignity, compassion, and cooperation to share their experiences, gain perspective, offer and receive advice, and feel the profound comfort derived from being around others who know exactly what they're going through.
"Doctors, social workers, and psychologists can't be all things to all people all the time," says Edward Madara, M.S., director of The American Self-Help Clearinghouse in Denville, N.J., which helps people around the country find and organize support groups. "When you sit down with others who have shared your experience -- no matter whether it's Alzheimer's caregiving, multiple sclerosis, an unfaithful spouse, or a recent cancer diagnosis -- you feel a sense of closeness and connection no professional relationship can match."
Many scientists were skeptical of support groups until the 1970s and the development of pyschoneuroimmunology, the study of how emotions influence the central nervous system and the immune system. Now we know that social support has profound psychological benefits.
The power of social support in Alzheimer's caregiving was clearly demonstrated recently in a study by researchers at the Aging and Dementia Research Center of New York University Medical Center (NYU-ADRC). They recruited 120 New York-area spouse-caregivers whose husbands or wives had been newly diagnosed with Alzheimer's disease. About half were assigned to a control group, who received standard NYU-ARDC advice on managing home care. The other half were assigned to an intensive treatment group that included a weekly support group of spouse-caregivers.
After three and a half years, the median length of time the control group could handle caring for spouses at home before having to place them in nursing homes was 874 days -- two years and five months. But for those in the intensive treatment group, the figure was 1,203 days -- about three years and three months -- a 10-month difference (Journal of the American Medical Association, Dec. 4, 1996).
Human beings are fundamentally social animals. Close social ties reduce depression, increase resilience when faced with life's challenges, and actually improve health. Just as exercise conditions muscles to handle heavier loads, social interactions condition the immune system to prevent illness and spur recovery more quickly from diseases we can't avoid.
The research into the health benefits of social support began back in the mid-1970s, when Leonard Syme, Ph.D, now a professor emeritus of epidemiology in the School of Public Health at the University of California-Berkeley, was stumped by data on differences in cholesterol levels and rates of heart disease in 17,000 Japanese men living in Japan and California. Usually, the higher the cholesterol level, the greater the risk of heart disease. But Dr. Syme saw a different picture: "We looked at men in both places who had the same cholesterol levels, and the California Japanese had five times as much heart disease as the Japanese men living in Japan. Then we compared men with the same blood pressure, smoking habits, and every other recognized risk factor for heart disease. Compared with Japanese men in Japan, the California Japanese had two to five time as much heart disease. I had no idea why."
Dr. Syme went to Japan, where he met with Japanese epidemiologists. "Japanese society," he explains, "is organized around social networks much tighter than what we have in the U.S. Japanese people still have very close ties to their families, neighborhoods and jobs. To Americans, that looks claustrophobic, like an invasion of privacy. But to the Japanese, our mobile, individualistic lifestyle looks terribly lonely, rootless, and isolated."
Dr. Syme theorized that companionship and close social ties protected the Japanese from illness. He found other studies of close-knit ethnic communities where death rates from heart disease were much lower than expected, some as much as 80% lower. None of the standard risk factors could explain this astonishing difference. Later, when these communities' tight social structure slowly unraveled due to economic pressures and aging, the heart disease rates started to climb.
"Social isolation," Dr. Syme concludes, "must be considered a significant risk factor for serious illness. By the same token, close social ties must be considered protective."
Dr. David Spiegel, M.D., a professor of psychiatry at Stanford University and director of the Psychosocial Treatment Laboratory there, agrees. "The relationship between social isolation and early death," he says, "is as strong statistically as the relationship between dying and smoking or having high cholesterol. It may be as important for health to have a strong network of family and friends as it is to quit smoking or reduce your cholesterol level. Unfortunately, medical science has greatly underestimated the value of social support."
In recent years, several studies have shown that social isolation releases a flood of stress hormones into the blood that trigger many psychological and physiological changes, including: increased heart rate, higher blood pressure, impaired immune function, greater difficulty metabolizing sugar (insulin resistance), and feelings of depression and anxiety ranging from simple tension to panic.
"These hormones normally ebb and flow," Dr. Spiegel explains. "But when stress becomes chronic, they remain consistently high, potentially impairing the body's ability to heal physical illnesses and cope with emotional stress."
On the other hand, well-developed social networks dam the flood of stress hormones, minimizing their presence in the bloodstream, and allowing the body to heal more efficiently and cope with stress more effectively.
In previous generations, social support came largely from family and from the communities where most people spent their entire lives. But in mobile America, family and old friends may be thousands of miles away. To replace the support they provide, hundreds of thousands of support groups have mushroomed across the United States.
"Support groups reduce isolation," explains Ed Madara of the American Self-Help Clearinghouse. "They're empowering and comforting. They teach practical coping skills. Sometimes they even help change laws and public perceptions. And usually, they're free."
As the recent New York study shows, people who care for a loved one with Alzheimer's disease can gain a great deal from support groups. The camaraderie, laughter, and back-and-forth bantering that take place in support groups help banish feelings of isolation. When you ask, "Has anyone ever felt or, "Has this ever happened to you?" the answer is almost invariably "Yes." Support groups legitimize members' feelings and experiences. You come away feeling: I am not alone.
To find a support group for Alzheimer's caregivers near you, call your local Alzheimer's Association affiliate, or a physician or social worker who deals with the disease. Or, try an online support group. Getbesthealth.org has reviewed several (see Site Reviews). Getbesthealth.org also offers an online bulletin board. Post your questions or concerns, and other visitors to the site can reply. Or reply to others. Just visit the Getbesthealth.org Community Board.