Perhaps one of the greatest costs of Alzheimer's disease is the physical and emotional toll on family, caregivers, and friends. The changes in a loved one's personality and mental abilities; the need to provide constant, loving attention for years on end; and the demands of bathing, dressing, and other caregiving duties can be hard to bear. Many caregivers must assume new and unfamiliar roles in the family and these changes can be both difficult and sad. Not surprisingly, caregivers of people with dementia spend significantly more time on caregiving tasks than do caregivers of people with other types of illnesses.
Although research on caregiver support is still in its early days, we've already learned a lot about the unique aspects of caregivers' personalities and situations. For example, one study of the psychological and physical responses of AD caregivers showed that they don't all have the same response to caregiving. Certain characteristics seem to make some caregivers more vulnerable to the physical and emotional stresses associated with dementia care. These characteristics include being a male spouse, having few breaks from caregiving responsibilities, and having preexisting illnesses.
Caregiver research is also beginning to tease out characteristics of support programs that might be most useful for particular groups of caregivers. For example, peer support programs that link caregivers with trained volunteers who also have been dementia caregivers appear to help. These programs are especially good for caregivers whose social support networks are weak or who are in very stressful situations. Other research has confirmed that the information and problem-solving needs of caregivers evolve over time as the person with AD changes. Support programs can respond by offering services and information geared to different stages of the disease.
One of the most difficult decisions that many families face is whether and when to place a loved one with Alzheimer's disease in a nursing home or other type of care facility. Once this decision is made, families must decide what type of care is best for the person and the family. Many investigators are working to identify strategies that can lead to improved quality of care in various facilities, including assisted living facilities, continuing care retirement communities, nursing homes, and special care units (a separate area within a nursing home or assisted living facility designed especially for patients with dementia).
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Caregivers vary depending on the culture and ethnic group involved. Most primary caregivers are family members:
The Realities, the Positives, and the Negatives of Caring for a Person with ADA reality check for an AD caregiver might look something like this:
Many research studies have shown that caring for a person with AD can have some negative effects on the caregiver...
...but research has shown that caregiving also has important positive effects:
Studying New Ways to Help Caregivers
It was midnight, the end of a long day of taking care of her husband. She was exhausted but she couldn't sleep. A year ago she would have felt totally alone, unable to share the hardships of caregiving, and desperate for ideas for how to cope better with his changeable moods and withdrawal from the world. Tonight was different. She went to the living room, switched on her computer, and plugged into a computer-based support group for family caregivers. She sent out a message and soon received replies from several fellow caregivers. They knew just what she was feeling. Their words of understanding and support eased her mind and helped give her the strength she needed for the days ahead.
Caring for a person with Alzheimer's disease has special stresses and difficulties. As a result, support groups have always been an important feature of AD caregiver programs. Conventional support groups have been enormously helpful for many caregivers, but they have a few drawbacks. Attending a group involves finding transportation and arranging for care for the person with AD. The group's meeting time may not coincide with the time that a caregiver wants advice or needs to express feelings. Some caregivers do not feel comfortable discussing their experiences publicly in a group. Members of some ethnic or cultural groups may be particularly reluctant to join a traditional support group.
In 1989, a researcher had an idea for a radically different, new kind of support system for family caregivers. She envisioned a computer-based system that would operate 24 hours a day, 7 days a week. It would provide expert medical advice and information about the latest developments in AD research. It would also include a "bulletin board" component that would allow caregivers to share ideas and give and get support by posting messages on-line. The project would provide a computer if needed, and would train caregivers in how to use the equipment. From the start, she invited the local Alzheimer's Association to join her in carrying out the idea. This partnership is still flourishing today.
Although many people doubted that adult and elderly caregivers with little or no computer experience would want to go online, the project, called the Alzheimer's Disease Support Center, was a hit from the start. In fact, the bulletin board component, called the Caregiver Forum, soon became the most popular element. Users were eager to communicate, share experiences and feelings, and learn from each other. They soon became, as they called it, a "computer family."
Scientists who have been conducting research with computer-based support systems have found they have two qualities that make them especially useful:
One of the most fascinating findings from this project was how quickly users overcame the potential barriers posed by an electronic communication system. Here are just a few of the techniques users have adopted to "humanize" the system, especially the Caregiver Forum:
:-) :)ing :-o :-| ( )s [hugs]
"I am soooooooo tired."
"It was reeeeeeeeeally scary."
"...this is one way I have to think not to go way D O W N"
In 2000, the NIA funded a follow-up study to the original project. Called Computer Mediated Support for Family Caregivers, or CO-MES, the study is exploring how best to use computers to provide information and support to family caregivers. The study team is trying to learn more about who uses this type of support and whether computer-based groups help to lessen the negative effects of caregiving. Two types of computer-based groups are being studied - a group led by a family caregiver and a group led by a nurse. Many of the system's features are the same as before, though users now access the system through the Internet. The system also now has a chat room, which allows users to have "real-time" conversations. At the same time, the original computer-based support group continues to operate.
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