"You don't know when it's going to end or what to expect."

"Your friends...will say we think of you, or we'll visit, but they never do, because they don't know how to act around Alzheimer's."

"I must have looked at 30 different homes."

These quotes, culled from support groups and personal conversations, express a few of the special problems that confront the wives, husbands, children, and other family members who take care of Alzheimer's patients.

Formal research on caregiving, begun in the early 1980's, is still young. The early studies documented that caregiving has a severe impact on both the physical and mental health of the caregiver. Fatigue, insomnia, and other physical symptoms are frequent. Cardiovascular risk factors, such as high blood pressure, may be affected. Studies also have linked the high levels of stress in caregivers with depression, a sense of isolation, and strained relationships with other family members.

Special Care Units for Alzheimer's Disease

Special care units or SCUs are separate areas for dementia patients in nursing homes, assisted living residences, and other caregiving facilities. They take different forms, but in general SCUs have special architectural features and/or programs tailored to the needs of dementia patients.

First appearing in the 1980's, SCUs have proliferated rapidly. About 9.6 percent of all U.S. nursing homes with 30 or more beds had SCUs by the end of 1990, according to the National Survey of Special Care Units in Nursing Homes. The number may continue to grow. A 1991/92 survey of Medicare/Medicaid nursing facilities found that between 13 and 14 percent of certified facilities had at least one SCU.

Aside from their dramatic growth, little is known about SCUs as a group. What features do they offer? Which features, if any, make a difference to patients, families, or staff? Ten research teams are now studying SCUs in search of answers to questions like these.

Early in these studies it became clear that SCUs vary widely. Some offer only one special feature, such as a sheltered area for pacing, perhaps, or staff training. Most have several special features, such as family counseling, support groups, and therapeutic activities for patients.

Still unknown is whether or not these special features make a difference. To find out, investigators are studying both SCU patients and dementia patients in traditional care settings, comparing them in areas such as: mental function, frequency of disturbing behaviors, degree of family involvement with the patient, staff and family satisfaction with the SCU, and costs in relation to benefits.

Source: Alzheimer's Organization.

Who are family caregivers?

Researchers have found that the greatest number of family caregivers are wives and husbands; daughters come next. Many caregivers are single women.

Researchers are now studying the experiences of caregivers from various ethnic and racial groups to see if their approaches to caregiving differ. African-American caregivers, according to several studies, are less likely to see caregiving as a burden and more likely to share it with a large number of extended family members, when compared to white caregivers. Scientists are exploring these differences to see if they can pinpoint the coping strategies or other factors that affect how different racial and ethnic groups perceive caregiving.

What can be done to reduce the burden?

This is a critical research question. Scientists are testing various methods (known in the language of research as interventions) to help caregivers. These fall into three broad categories.

Emotional support

One major hypothesis is that social support can help reduce stress and other caregiving problems. Support groups, individual counseling, and family counseling all fall into this category, and they are being studied in various ways. For example, one study is comparing two different forms of social support--support groups and home visits from professionals--to see if one is more effective than the other in boosting caregiver well-being and reducing the sense of burden.

To date, studies have generally shown a high level of satisfaction with support groups, although it is not clear whether they also help decrease caregivers' sense of burden. Individual counseling has alleviated specific problems such as depression.

Services

Help from community groups or professionals is another promising way to ease the difficulties facing caregivers. Probably the most common service, and the most studied so far, is respite care. This is the broad term for a variety of situations in which someone else cares for the patient for a period of time, giving the principal family caregiver some temporary relief. Respite services are offered in the home, in day care facilities, and even in institutions where patients stay a limited time, usually a week or two. So far studies of respite care show a very modest benefit, and current research is looking for ways to increase its impact.

Knowledge and skills training

Another active hypothesis is that Alzheimer's caregivers will benefit by learning more about the disease, including the resources available to them and specific skills for coping with its symptoms. Research projects, for instance, have trained caregivers in behavior management techniques and other ways to resolve day-to-day problems.

The outcomes of many of these studies are positive, in that caregiver behavior and sometimes patient behavior is changed. In some cases, these studies have also demonstrated improvements in caregiver stress, anxiety, and depression. On the other hand, some of these studies show that decreased stress does not necessarily translate into a reduced sense of burden.

A fourth category of interventions combines all three of these approaches. Studies of such comprehensive efforts suggest that the more components they have, the better the chance that they will meet the needs of caregivers. However, questions remain about the cost effectiveness of comprehensive interventions and about the relative benefits of their individual components.

Other approaches

In the attempt to develop better interventions, researchers are now trying to find and sort out the many factors that determine caregiver stress. For instance, one study is looking at caregiver personality, the degree of care needed, and resources available to the caregiver. The study's goal is to see how these factors interact to influence the caregiver's sense of burden.

Studies are also exploring when and how Alzheimer's caregivers use formal services--adult day care or home health aides, for instance. So far, the findings suggest that most caregivers delay getting formal services until their situations are extremely stressful.

Institutional care

While finding services to help with family care may be difficult, Alzheimer's families say that the decisions surrounding placement in a nursing home can be even harder. Whether and when to turn to a nursing home is the first and some say the most difficult decision. Then come decisions on what type of care is best for the patient and affordable for the family. An informal board and care facility, where patients are supervised in a home setting? An assisted living facility, where patients receive some help with the activities of daily living? Or a traditional nursing home? The options also include special care units within nursing homes and assisted living facilities.

Research is now focusing on various kinds of institutional care. For instance, one study is looking at 100 board and care homes and 100 of their residents to see what factors affect the care received in these facilities. Another study is focusing on nurses aides in one New York City nursing home in an attempt to understand how work situations affect their caregiving behavior. The overall aim is to identify strategies that can lead to improvements in the quality of care and lighten the burdens of caregiving.

Source: Alzheimer's Association, Caregiver Information