Caregiver Issues with Alzheimer's Disease

What is Alzheimer's Disease (AD)?

Alzheimer's Disease (AD) is an incurable brain disease that slowly gets worse over time. It causes the most common form of dementia, a gradual loss of mental functions such as thinking, remembering, and reasoning.

People with AD have symptoms ranging from mild anxiety and memory loss to agitation, violence, and being unable to talk. In the very early stages, some people with AD try to hide their problem. Others, and all who are severely affected, are unaware of their problem. These behaviors can pose a risk of physical harm to the person with Alzheimer's disease and to others. People with AD may not like to be around other people. Other people may shun those with AD because of their strange behavior.

People with AD often have sleep problems. They may sleep more during the day and less during the night. This is very hard for caregivers because it often results in caregiver exhaustion from stress and lack of sleep.

What should I do as a caregiver for someone with AD?

Caring for someone with AD calls for extra patience and understanding. Try to simplify the routine and surroundings. Minimize the situations that cause the most stress and unusual behaviors. Although safety is important, encourage independence of the person as much as possible. Some ideas are:

• Reduce stress by keeping routines and the environment as much the same as possible.
• Do only those things for the person that he or she can no longer do. The person with AD may be able to do part of a task. Let the person do whatever he or she is able to do successfully.
• Do not tease or argue with the person.
• Do not let the person get overly tired.
• Try to limit the number of new people that are around at any one time. New people increase stress for some of those with AD.
• Watch for situations that may cause unwanted behavior. For example, crowds and noise may increase anxiety.
• Give choices, but limit the number of choices to two. Too many choices can be difficult for someone with AD to handle. Choices can sometimes help to channel behavior. If your care receiver resists cleaning up, you may ask, "Do you want to wipe your chin or shall I?" instead of asking, "Can I wipe your chin?"
• Celebrate what the person can do well; don't focus on what he or she can't do. Don't remind the person of what he or she used to do. Don't try to get the person to act like he or she used to act. Make time for fun and togetherness in the present time, even if the person forgets quickly.
• When the person with AD can't keep from behaving badly or is having trouble with self-control, divert the person to something else. For example, say, "Let's do this now, over here," rather than trying to tell the person why he or she shouldn't do something.
• Listen to what the person with AD is saying. Try to understand the feeling behind the person's words. Don't argue with the content of the person's thought. Agree with the feeling. For example, don't tell the person that his or her mother is dead when the person is looking for her. Instead say, "Oh, you miss your mother. What would you say to her if she were here?" Then gradually change the subject.
• Try to understand the person's past experiences and habits. Make current routines as much like the past as possible.

How should I respond to a problem behavior?

Remember that the behavior is a symptom of the disease and not directed toward you or others.

Who is the behavior is affecting? Is the behavior really a problem or not? For example, a person talking constantly to an imaginary person without bothering other people does not have a problem behavior. However, a person arguing with another resident or a family member and using foul language does have a problem behavior.

Change the way you respond, rather than trying to change the person's behavior. The person with AD is not aware that his or her behavior is inappropriate. The way you respond can have a calming effect or make the situation worse. Do not argue or explain what is happening. Divert the person's attention and offer reassurance.

Change any routines that may have started the behavior. Schedule events to be at the best time of the day for the person. Provide frequent breaks from stressful activities, provide snacks, or return to a nonstressful familiar activity.

Make changes in the surroundings if possible to prevent the behavior from happening. For example, a person who wanders may need several types of locks installed on doors or a bolt put up high where one ordinarily wouldn't be. For a person who rummages through drawers, provide a specific place (like a drawer, dresser, or closet) for items that he or she can rummage through.

When at the doctor, don't expect or encourage a medicine for every health or behavior problem. Expect and encourage your doctor to minimize medicines. Especially avoid medicines that may have serious side effects, such as antihistamines, some antispasmodics, some antidepressants, certain pills for incontinence of urine, and others. Also, try to minimize tranquilizers and sleeping pills, especially long-term use. Generally, the problem behaviors caused by AD cannot be handled with medicine. Medicine can make problems like agitation and confusion worse. In some situations, however, it may be necessary and beneficial to use medicine to control problems such as misperceptions and depression.

What help is available in my community?

Ask your doctor about agencies in the community that provide assistance for caregivers. The local Department of Social Services, along with home health care agencies, provide sources of information for caregivers. You also can get help through community agencies such as Retired Senior Volunteers Program (R.S.V.P.), or senior centers. A variety of services may be available such as:

• homemakers
• home health aides
• companions
• licensed nurses
• social workers
• therapists
• respite care
• adult day care centers
• transportation services
• grocery shopping services
• chore services
• support groups.

Many churches offer respite programs or other elder care assistance. Many others would do so if asked. Occasionally, other older adults can be organized to "bank" volunteer hours and then draw on those hours someday when they need the help. Churches and civic organizations in your area may be willing to start and coordinate these programs if requested.

To find help through support groups in your community, contact:

The Alzheimer's Association
919 N. Michigan Avenue, Suite 1000
Chicago, IL 60611-1696
Phone: 1-800-272-3900
http://www.alz.org

The local Area Agency on Aging, which may be called something slightly different in your area, also has information about services available. These agencies belong to a network established by an act of Congress. All get federal funding and most receive state and local funding as well. If you have trouble finding the phone number for your local Area Agency on Aging, call the toll-free Eldercare Locator phone number, 1-800-677-1116.

Respite care programs provide a break to families who care for people with AD at home. Services can vary from a few hours to several weeks. Brief stays in nursing homes can also be arranged. Adult day care programs offer care during daytime hours. This provides respite for the caregiver and different surroundings for the person with AD. Many communities offer assisted living or personal board and care homes with secured units for persons with AD. These facilities provide homelike, nonstressful environments for small numbers of persons with AD. Consult your local Area Agency on Aging or the Alzheimer's Association for information.

What can I do to take care of myself?

Caring for a person with AD doesn't have to be a lonely experience, although it's common to feel that no one else understands what you are going through. Family support groups offer the chance to share feelings with others who are in similar situations. A support group is made up of caregivers, family members, and friends of those with AD or other dementia. Your local AD organization can help you join or start a support group in your community.

As a caregiver, you need help and support as behavior and care needs change in the person with AD. It's easy to feel alone because of the demands made upon you for care and attention. Support groups can help by giving you a chance to meet others who have similar experiences. Meetings provide information but are also social events for you. The Alzheimer's Association supports these groups by providing information and referrals.

Topics discussed in support groups usually focus on feelings about caregiving, ideas to help you, and open discussions about a variety of issues pertaining to AD. Caregivers feel more in control of their lives when they understand more about the disease and learn from others in the group. The shared experiences and the encouragement given and received are important functions of a support group. Explore your community's available resources, such as adult day care or respite care.

Remember, it is as important to care for yourself as it is to care for the person with AD.