Caring for a loved one with Alzheimer’s disease is a physically and emotionally draining experience. It may be especially difficult if you are the spouse and have your own illnesses or disabilities to contend with as well as caring for your husband or wife.
Spouse caregivers face increased risks for lowered immunity, heart problems, and chronic health issues. The stress and hardship can lead not only to decreased well-being but also the inability to continue care at home.
Now, results from a 20-year study bring hope. Counseling and social support can be effective ways to protect the health of spouse caregivers. Caregivers who receive the support they need are also less likely to suffer from depression or find it necessary to move a husband or wife with Alzheimer’s to a nursing home.
Research Findings Show Counseling Makes a Difference
Published in the September 2007 issue of the American Journal of Geriatric Psychiatry, the study on the effects of a counseling intervention on the physical health of Alzheimer’s caregivers is part of ongoing research led by Mary S. Mittelman, DrPH, research professor in the department of psychiatry at New York University (NYU) School of Medicine.
Continually funded since 1987, the study of the NYU Caregiver Intervention is the longest-running and largest study ever devoted to testing an intervention to improve the well-being of Alzheimer’s caregivers. The study was supported by the National Institute of Mental Health, the National Institute of Aging, and the New York University School of Medicine Alzheimer’s Disease Center.
Research conducted over the past 20 years revealed both short-term and long-term effects of the counseling intervention. “Some of the effects are not as immediately obvious,” Dr. Mittelman points out.
The study included 406 spouse caregivers of people with Alzheimer’s disease that were assigned at random into two equal groups. The first group received six sessions of individual and family counseling, agreed to join support groups that met weekly and were associated with the Alzheimer’s Association, and could telephone the counselor for unplanned counseling (additional counseling as requested by any participant) for as long as they participated in the study. The second group received the usual care available at the NYU Alzheimer’s Disease Center, which was information and advice upon request and help in a crisis. Results found that caregivers in the group receiving counseling and support intervention reported less of a decline in physical health than caregivers in the group receiving the usual care.
“Preserving the health of spouse caregivers through counseling and support also benefits the person with Alzheimer’s disease, as caregivers who are in poor health are more likely to have difficulty in providing good care,” says Dr. Mittelman. Often the spouse caregiver is an older adult who may be dealing with physical health problems of his or her own.
Counselors Show Families How to Offer Support
A principal theme of the study’s counseling sessions was for the family to figure out how to provide emotional support and assistance for the spouse caregiver that was helpful to the spouse caregiver, and not overly burdensome to the other family members, Dr. Mittelman says.
In the first session, the counselor meets with the primary caregiver alone. The caregiver is asked, “Who in the family is important to you?” Those named by the caregiver may be extended family members as well as siblings, daughters, and sons. The next four counseling sessions include all of the family members who the caregiver feels are important.
A typical counseling session provides an opportunity for the caregiver and family members to discuss their concerns. For example, there may be concerns or disagreements about the caregiver’s ability to continue to provide care at home or whether it’s time to move care to a nursing home.
“Adult children may argue with their mother about the best place for Dad and how to care for Dad,” Dr. Mittelman says. It can become an emotionally charged discussion for everyone involved, but the counselor serves as a mediator and is able to lead a discussion of these issues and prevent family members from getting overly emotional.
Self-rated Health Important in Spouse Caregivers
An important part of the study was the focus on what researchers call self-rated health (SRH). SRH is a general feeling or assessment of your own health. SRH is significant because it can predict future illnesses and chronic health conditions among caregivers. SRH is also widely used in national surveys by the Centers for Disease Control and Prevention (CDC) and internationally by the World Health Organization.
Participants in the study were asked three questions to rate their health: 1) how would you rate your overall physical health at the present time (poor to excellent); 2) is your health now better, about the same, or worse than it was five years ago (worse/about the same/better); and 3) how much do your physical health troubles stand in the way of your doing the things you want to do (a great deal/a little/not at all)? Answers to the questions were assigned numeric values, and the sum was used to measure SRH. “Every caregiver is different, which is why we looked at questions about self-rated health, which everyone could answer,” Dr. Mittelman says. “Self-rated health is a predictor of many diseases, disability, and even death.”
The study found that counseling and social support intervention had a beneficial effect on SRH of caregivers that started within four months of enrollment and lasted more than a year. “Individualized counseling programs that improve social support for caregivers can have many indirect benefits, including sustaining their physical health,” says Dr. Mittelman.
Previous survey results found that caregiving spouses who received enhanced counseling and support also delayed placement of their spouse in a nursing home facility by one and a half years compared to caregiving spouses who received the usual care. Counseling and support significantly improved their satisfaction with their relationships with their family and friends and reduced depression of spouse caregivers in addition to helping maintain their physical health.
“Caregiving for a person with any degenerative condition is a difficult task,” says Gerda G. Fillenbaum, PhD, research professor of medical psychology at the Center for the Study of Aging and Human Development at Duke University Medical Center in Durham, N.C. “It is particularly so in Alzheimer’s disease because of financial, physical, and emotional demands, often resulting in severe impact on the caregiver.
“Mary Mittelman’s carefully executed study provides solid information on how an enhanced counseling program, which deliberately includes the family and offers as-needed access to support, improves and maintains caregivers’ views of their own physical and mental health,” Dr. Fillenbaum continues. “Such evidence should encourage the provision of enhanced programs of this type, which may reduce burdens otherwise placed on the health care system by both the patient and the caregiver.”
Avoiding Social Isolation
Social isolation is a problem that many spouse caregivers must deal with on a daily basis. Although technically the caregiver is not alone, sharing time with a person with Alzheimer’s disease is just not the same as sharing time with other people once the dementia becomes severe.
“Isolated caregivers may have worse health because they are under a huge amount of stress, but few outlets to reduce the stress,” says Dr. Mittelman. “They can become isolated because they stay home rather than be embarrassed by the way the person (who is cared for) behaves in public, but do not go out without their spouse because they feel they cannot leave him or her home alone.”
Building and maintaining social connections has long been associated with staying healthy. “Tangible and emotional assistance from family and friends helps avoid the negative impact of loneliness and social isolation on health,” Dr. Mittelman’s study notes.
Dr. Mittelman hopes the new findings will promote wider availability of such services and encourage more doctors to refer caregivers to counseling and support programs. “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.”
Those who care for a spouse with Alzheimer’s disease may not even define themselves as caregivers, says Dr. Mittelman. But identifying themselves that way is the first step in seeking needed support available from family, friends, and counselors. Asking for support is the key to staying healthier over a longer period of time and able to continue care for a husband or wife at home.