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A large and rigorous long-running trial at New York University School of Medicine called the NYU Spouse-Caregiver Intervention Study continues to uncover effective strategies for helping friends and family cope with the stress of caring for those with Alzheimer’s disease. Not only can these techniques delay the need to place a patient in a nursing home or other residential facility, research shows, but they also lead to improved well-being and less depression among caregivers.
The multifaceted NYU approach employs several key strategies that can be tailored to fit the varying needs and abilities of caregivers. Components include:
- 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.
- Counseling and ongoing support for the caregiver 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.
- Improving social support and reducing family conflict to help the caregiver withstand the hardships of caregivers and to help family member understand the primary caregiver’s needs, and how best to be helpful.
The study, the longest running of its kind to date and now in its seventeenth year, has enrolled 406 caregivers (average age of 71) who were caring for a spouse with Alzheimer’s. About a third of patients had mild dementia when the caregivers enrolled, 41 percent had moderate Alzheimer’s, and 25 percent were in the severe or very severe stage.
Providing caregivers with in-depth education, counseling and support had a major impact on the ability of caregivers to keep patients at home. In the first year after entering the study, 11 caregivers in the treatment group placed their husbands or wives in nursing homes, compared to 24 caregivers in the “control” group who did not receive the more intensive help. In the longer term, caregivers who received the NYU assistance were able to keep their loved ones at home, on average, for 329 days longer than those who received more standard care. The benefits were particularly marked for patients with mild to moderate Alzheimer’s, for whom nursing homes are generally least appropriate.
In addition, by eight months after enrollment in the study, caregivers who received the multifaceted treatment were significantly less depressed than their counterparts who received more customary care. This benefit seemed to be due to the fact that those in the treatment group grew closer to fellow family members, were markedly more satisfied with their social networks, and had less severe reactions to the problem behaviors of the patients.
The NYU results are consistent with earlier research. A long-term study conducted in Australia beginning in the late 1980s, for example, showed that teaching caregivers problem solving and coping skills reduced stress and delayed the need for institutional care. Eight years after entering the study, caregivers who received an intensive 10-day training program, followed by periodic booster sessions and access to counseling if they requested it, were able to keep patients at home significantly longer than those who did not receive these services.
The NYU approach is unique in several aspects. For one, it involves family members, and not just the primary caregivers. In addition, although the initial formal period of counseling and education is relatively brief (six sessions), caregivers continue to receive ongoing support in the form of support groups and counseling on demand for the entire course of the illness.
As the research shows, this intensive support allows families to keep loved ones at home for longer periods, an outcome that most families strive for and one that saves money compared to nursing home care. In addition, caregivers who receive the ongoing counseling and support are less likely to become depressed amid the stress of caring for someone with Alzheimer’s.
How can counseling and support groups lead to better Alzheimer’s caregivers?
As part of the long-running New York University Spouse-Caregiver Intervention Study, caregivers and family members are initially provided with individual and family counseling sessions (six sessions are formally provided). In addition, support groups and on-demand telephone counseling are provided on an ongoing basis. These services have been shown to significantly increase the time that patients with Alzheimer’s remain at home and have also been shown to decrease depression and improve well-being among caregivers.
Counseling. Individual and family counseling sessions are specifically tailored to the needs of each caregiver and conducted in person at a location that is most convenient for the participants. The major aims of counseling are:
- Education so that caregivers and family member understand the nature of Alzheimer’s and how it can affect each member of the family.
- Improving communication, so that family members can better convey and understand each other’s needs.
- Problem solving. Because Alzheimer’s disease can be so overwhelming, counselors aim to break the problem up into smaller, more manageable tasks. Counselors also make caregivers and family members aware to available options and formal services.
- Teaching caregivers and family members behavior management strategies. Remaining calm, not rushing the person with Alzheimer’s disease, speaking softly and trying to understand the possible motivation for problem behaviors can reduce their severity and their impact on the caregiver.
- Concrete planning to enhance caregiver support. For example, family members other than the primary caregiver are encouraged to take over specific tasks. Caregivers are encouraged to use formal services such as legal and financial advice, and to obtain the best health care for themselves and for the person with Alzheimer’s disease.
- Educating family members about specific drug treatments that are available for management of such symptoms as depression, agitation or nighttime wandering.
An important part of the program is getting family members involved early on in the process. Family counseling sessions provide problem solving and communication techniques for the family. In addition, the primary caregiver learns to ask for and accept help, and family members learn how to offer help so that it is likely to be accepted. These aspects improve family relations and may lead to increased intimacy.
Support Groups. Immediately after the individual and family counseling sessions, caregivers are required to join support groups affiliated with the Alzheimer’s Association. These support groups are widely available in New York and many other metropolitan areas. These groups, which meet weekly, are led by an individual who is experienced in working with caregivers of those with Alzheimer’s.
Support group leaders teach about Alzheimer’s disease and suggest appropriate resources for information and referral. Group members learn techniques from each other on home-care skills and how to cope with special problem situations and discuss the emotional aspects of the caregivers experience with each other. During support group sessions, members are encouraged to consider their own needs as well as the needs of the person with Alzheimer’s disease. The group is available as long as the caregiver needs support.
Ongoing “On-Demand” Counseling. In the third component of treatment, ad hoc counseling, family counselors provide informal consultations on the telephone or in person to caregivers or family members whenever they request it. This ongoing support allows counselors to respond to the effects of the changing nature of the disease and to provide continuing care and crisis intervention.
How can social support ease caregiver stress?
Two important contributors to caregiver stress are lack of social support and the caregiver’s assessment of the behavior of the patient with Alzheimer’s.
Social and family support. Caregivers who lack sufficient or appropriate social support from family and friends are often put under heightened stress. Family conflicts, isolation and loneliness further exacerbate the stress of caregivers. While social support may not affect the primary stress caused by the disease, it can change the caregiver’s response to the illness. Feeling supported by family and friends can improve psychological responses to stress and boost the caregiver’s sense of well-being.
The relentless downward course of Alzheimer’s disease can have devastating effects on the structure and functioning of the family as well. The person with Alzheimer’s gradually relinquishes his or her previous role in the family, and other family members must step in to fill the gaps. In addition, other family members may not recognize that a husband or wife who acts as a primary caregiver has now lost a major source of social support — the spouse on whom they previously relied.
When talking about improving social support, the quality of the support is much more important than the number of people who are available to the caregiver or the frequency of contact with members of the caregiver’s social network. Family conflict about how and where it is best to care for the patient can be can be very stressful for the primary caregiver. Many caregivers feel resentful of other family members for not providing them with the kind of help they want, although they may not know how to ask for that help or accept help when it is offered.
Caregiver appraisal. Another source of stress is sometimes referred to as caregiver appraisal. If the caregiver misunderstands the cause of the patient’s behavior and interprets it as intentional rather than due to the illness, the caregiver may react with anger, feel rejected or become depressed. If other family members do not understand the disability of the patient, they may criticize the reactions of the caregiver rather than be supportive.
Caregiving, in and of itself, can become tedious, frustrating and isolating. An important aspect of helping the Alzheimer’s caregiver is to make caregivers and other family members aware of the availability and value of formal support. Caregivers can benefit from formal support services such as in home respite or day care programs for the patient and support groups for themselves in conjunction with the informal support of family and friends.
What additional research is being done to better understand the burdens of caregivers for a person with Alzheimer’s?
A study analyzing data from more than 1,500 caregivers who participated in the 1996 National Caregiver Survey provides details on the physical and other costs of caregivers. These data show that dementia caregivers spend significantly more time on caregivers tasks than do people caring for those with other types of illnesses. In addition, they report that this type of caregivers has a greater impact in terms of employment complications, caregiver strain, mental and physical health problems, time for leisure and other family members, and family conflict than do other types of caregivers.
Other research shows that the information and problem-solving needs of caregivers evolve over time as the disease progresses and caregivers issues shift. These findings point to a need for programs and support services tailored to the unique and evolving challenges faced by caregivers of people with Alzheimer’s. A study examined particular characteristics of caregivers that might predict whether they would start and stick with an intervention designed to help them with caregivers. Knowing these characteristics may help in the future to create better ways of assisting family members and other caregivers to care for persons with Alzheimer’s.
The researchers found that being older and female predicted participation in the intervention. Those who found it easier to adhere to the intervention were older, were less depressed, and had a less dependent person to care for. Caregivers who reported depressive symptoms were unable to adhere to strategies that involved behavioral change or manipulations to the physical environment, and the authors suggest that these caregivers should be treated for their depression before they are asked to learn environmental modification techniques.
The safety of the home environment is an important component of caring for persons with Alzheimer’s. According to a study reported by a team from Thomas Jefferson University in Philadelphia, persons with dementia living alone or with a family caregiver must deal with six basic safety concerns: injury from falls, injury from ingesting dangerous substances, leaving the home and getting lost, injury to self or others from sharp objects, fire or burns, and inability to respond rapidly to crisis situations. A wide range of environmental strategies can be introduced to maximize home safety. As everyday competencies decline with memory loss, persons with dementia may have increasing difficulty navigating physical spaces and processing and interpreting environmental cues and stimuli. As a result, caregivers may need periodically to reevaluate the physical safety of the home and introduce new strategies for keeping the home safe.
What is scientific research revealing about effective educational interventions for caregivers?
REACH (Resources for Enhancing Alzheimer’s Caregiver Health) is a multi-site initiative by the National Institute on Aging to conduct social and behavioral research on interventions designed to help caregivers of people with Alzheimer’s and related disorders. REACH projects are testing such interventions as educational support groups, behavioral skills training programs, family-based interventions, environmental modifications, and computer-based information and communication services. Some 1,222 caregivers and care recipients are participating in the study, which includes large numbers of African Americans, Cuban Americans, and Mexican Americans. Data from the REACH study are just being analyzed, but very preliminary general findings suggest that testing of interventions to determine effectiveness in different groups is important, and research in this area continues. Check this site for updates about this important research.
Learn more about Alzheimer’s caregiving from the National Institutes of Health Alzheimer’s Caregiving page (will open in new window).