D. Improving Support for Families and Other Caregivers

Elderly couple hugging 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).

Who are the AD Caregivers

Family portrait Caregivers vary depending on the culture and ethnic group involved. Most primary caregivers are family members:

Spouses: This is the largest group of caregivers. Most are older, too, and many have their own health problems to deal with.
Daughters: The second largest group of primary caregivers are daughters. Many are married and raising children of their own. Juggling two sets of responsibilities is often tough for these members of the "sandwich generation."
Daughters-in-law: Many women in this group help take care of an older person with AD. They are the third largest group of family caregivers.
Sons: Though many are involved in the daily care of a parent with AD, sons often focus on the financial, legal, and business aspects of caregiving.
Brothers and sisters: Siblings may assume primary responsibility for care if they live close by, but many are older and are coping with their own frailties or health problems.
Grandchildren: Older children may become major helpers in caring for a person with AD. Adolescent or young grandchildren may need extra help and support if their parents' attention is heavily focused on the ill grandparent, or if the grandparent with AD lives in the family's home.
Other: Friends, neighbors, and fellow faith community members also often help care for a person with AD.

The Realities, the Positives, and the Negatives of Caring for a Person with AD
A reality check for an AD caregiver might look something like this:

Physical effort and time commitment: Help with bathing, eating, dressing, and other activities of daily living take a lot of time. As the disease progresses, the need for this kind of help increases. Behavior problems and safety concerns mean that the caregiver is always "on duty," even when not actively helping the person.
Financial costs: The costs of care vary, but can be high depending on whether the person is cared for at home or in a residential care setting and how much help the caregiver has. Many caregivers give up their jobs or cut back on their work hours and this also has financial implications.
Psychological loss: Caregivers often experience a profound sense of loss as the disease slowly takes their husband, wife, parent, or friend. The relationship as it once was gradually ends and plans for the future must be radically changed. Caregivers must come to terms with "the long goodbye."

Family sitting at a dining room table Many research studies have shown that caring for a person with AD can have some negative effects on the caregiver...

Employment complications
Emotional distress
Fatigue and poor physical health
Social isolation
Family conflict
Less time for leisure, self, and other family members

...but research has shown that caregiving also has important positive effects:

A new sense of purpose or meaning in life
Fulfillment of a lifelong commitment to a spouse
An opportunity to give back to a parent some of what the parent has given to them
Renewal of religious faith
Closer ties with people through new relationships or stronger existing relationships

Science on the Cutting Edge

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:

They reach lots of people simultaneously. Many users can log on to get information that is posted on the system. In addition to providing lists of useful publications and materials, the systems post information on traditional support groups, daycare centers, and other services. They also provide a "Q&A" module where users can get answers to their specific caregiving questions from a team of physicians, nurses, social workers, psychologists, and staff of the Alzheimer's Association. In addition, users can browse an archive of previously asked questions and answers organized by topic. Users can also interact with each other through the bulletin board component.
Computer-based systems address some of the drawbacks of traditional support groups. They put control of the support process in the hands of the user. Users can talk with others and get help whenever they need it, day or night. Some users log on daily; others log on only when they have a specific question or need. Because the computer is at home, they don't need to make special arrangements to get to a support group meeting. Users can express themselves publicly if they want to or they can be anonymous if that is better for them. For every user who posts messages on the system, researchers have documented that several just read what others have posted. These users seem to benefit from the sense of kinship with others facing similar situations and may in time begin to participate more actively.

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:

Using punctuation keys, users have incorporated an array of icons into their messages to represent faces and gestures. They also intentionally misspell words and manipulate the placement of letters. All of these devices help users convey their feelings.

Users talk about all sorts of things, not just caregiving issues. Sharing details of everyday life - weddings, children's activities, hobbies, even the weather - seems to help users reduce their feelings of isolation and brings a sense of normality and balance to their relationships with others.

:-) :)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"

Friendships begun over the computer have blossomed into regular meetings for meals and get-togethers.

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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Page last updated Aug 29, 2006