November 1, 2006
Maintaining a close network of family and friends who can be called on for emotional support may be key to managing day-to-day care in those who care for a loved one with Alzheimer’s disease at home, researchers report. The findings are based on results from the long-running study led by Dr. Mary Mittelman at the Silberstein Institute at the New York University School of Medicine. Caregivers who tended to a husband or wife with Alzheimer’s disease felt generally less stressed and more satisfied when they were educated about the disease and provided with ongoing counseling and support services. Strong emotional support, frequent interactions and visits from others, and a large network of friends and family who could be called on all appeared to boost satisfaction and enhance day-to-day coping skills.
Some five million Americans care for a loved one with Alzheimer’s disease at home, a burden that can take a big toll on health and well-being. Many such caregivers feel isolated from family and friends, and stress levels are likely to rise as symptoms grow more severe with time and the requirements of care increase.
At the NYU Silberstein Aging and Dementia Research Center, researchers have been providing a targeted program of counseling and support in the NYU Spouse-Caregiving Intervention Study, the longest running research project of its kind. The NYU approach employs several key strategies designed to help friends and family cope with the stress of caring for someone with Alzheimer’s disease. Components of the program include:
1) Education of caregivers and family members about Alzheimer’s disease, its effects on the patient, how best to manage care and respond to symptoms, and how to improve social support for caregivers.
2) Counseling and ongoing support for the care partner and family members, including both individual and family counseling, encouragement for caregivers to join support groups, and telephone counseling for the caregiver and other family members when needed.
3) Improving social support and reducing family conflict to help the caregiver withstand the hardships of caregiving and to help family members understand the primary caregiver’s needs, and how best to be helpful. Counseling can play an important role in improving general mental health in people who care for someone with Alzheimer’s disease.
When social support is available through support groups and professional counseling, people have a chance to express positive and negative feelings about coping with hardship. Discussing problems with counselors and fellow caregivers allows people to identify needs, express those needs to other family members, and adjust to the challenges of a progressive illness like Alzheimer’s.
Counseling can be especially important for those who care for a spouse with Alzheimer’s disease. Such caregivers tend to be elderly themselves and often are coping with ailments that may limit their mobility or cause suffering. Many spouse caregivers may become socially isolated because they are afraid to leave their partners at home alone or to go out with their partners. Behavioral problems related to Alzheimer’s, such as night wandering, incontinence, agitation, and an inability even to recognize a loved one, can be particularly trying for care partners as the disease progresses.
Wide Range of Benefits
The ongoing NYU trial, which started in 1987, has shown that a comprehensive program of counseling and support provides a wide range of benefits for those who care for a spouse with Alzheimer’s disease. Such care can delay the need for a loved one with Alzheimer’s disease to enter a nursing home. It can also reduce depression in caregivers, an effect that may persist for years. Spouse caregivers were also better able to cope with behavior problems related to Alzheimer’s. They also felt less isolated and more connected to their social support networks, an effect that can boost overall psychological well-being.
The current study looked at 200 spouse caregivers who were caring for a loved one with Alzheimer’s disease. All were given intensive counseling and support through the NYU program. During the next five years, researchers evaluated several aspects of social support, including:
1) Instrumental support, including help with day-to-day activities such as cleaning the house, moving or bathing someone with Alzheimer’s, or help with driving.
2) Emotional support. This includes offering a helpful ear to confide in or a shoulder to lean on during times of need.
3) Information support, including advice form doctors, counselors, and other health professionals, as well as advice from peers who have gone through similar circumstances.
The researchers found that spouse-caregivers who received comprehensive counseling and support experienced consistently higher levels of satisfaction compared to a control group that received standard support and care. The benefits began within four months of the targeted program, and continued during the five years of the study. The spouse-caregivers who received ongoing counseling and comprehensive support felt more supported by family and friends. They also tended to call on loved ones for support, and to visit or bring them into their homes, more often. This increased social support, the researchers believe, enhanced feelings of well-being among the caregivers.
The findings underline the importance of comprehensive counseling and support, as well as of nurturing a network of family and friends who can be called on for emotional support when caring for a loved one with Alzheimer’s disease. Close social ties help caregivers to feel less isolated and more connected with the world around them. Visits from close family and friends help break the isolation of caring for someone with Alzheimer’s disease. Such support also gives caregivers the chance to share news, report problems, and discuss feelings.
A program of counseling and support “led to sustained higher levels of social support over a five-year period, even while the behaviors of the spouse with Alzheimer’s disease changed,” the researchers write. “Given the growing number of people expected to be caring for a relative with Alzheimer’s disease, the evidence that the intervention also enables caregivers to become less isolated and reach out more effectively to family and friends adds to its appeal as a treatment that should be widely available.”
Enlisting ongoing help and support throughout the care-giving process can be critical for maintaining well-being and helping to manage the extreme demands of caring for a loved one with Alzheimer’s disease. For more help on care-giving, visit www.ALZinfo.org, The Alzheimer’s Information Site. Alzinfo.org offers a wealth of expert advice and helpful tips on caring for a loved one with Alzheimer’s. You need not do it alone.
By www.ALZinfo.org, The Alzheimer’s Information Site. Reviewed by Mary Mittelman, Dr.P.H., Director of the Psychosocial Research and Support Program at NYU School of Medicine’s William and Silvia Silberstein Institute on Aging and Dementia. Dr. Mittelman serves on the editorial advisory board of the Fisher Center for Alzheimer’s Research Foundation.
Paricia Drentea, Volivio J. Clay, David L. Roth, Mary S. Mittelman, “Predictor of Improvement in Social Support: Five-Year Effects of a Structured Intervention for Caregivers of Spouses with Alzheimer’s disease.” Social Science & Medicine, Volume 63, 2006, Pages 957-967.