Caring for Someone with Alzheimer's Disease

What is Alzheimer's disease (AD)?

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

People with AD may have a range of symptoms such as:

• mild anxiety
• memory loss, worse with recent events that events in the past
• agitation, such as pacing, pinching, scratching, hitting others, or shouting
• trouble concentrating or solving problems
• being unable to talk.

In the very early stages, most people with AD are aware of their problem and may try to hide it. As the disease progresses, they are no longer aware of the problem. Family and friends of the person may not be aware of the problem until it is quite severe.

People with AD may not like to be around other people. Other people may shun those with AD because of their strange behaviors. These behaviors can be harmful to the person with Alzheimer's disease and to others.

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. You want to keep the person safe, but still allow them to be as independent as possible. Try to avoid things that cause a lot of stress and unusual behaviors. Some ideas are:

• Reduce stress by not changing routines and surroundings. People with AD do better with a regular routine.
• Do only those things for them that they can no longer do. People with AD may be able to do part of a task. Let them do whatever they are able to do successfully.
• Do not tease or argue with them. It does not work because they can no longer reason.
• Do not let them 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 and avoid 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 people with AD to handle. Choices can sometimes help to channel behavior. If they resist cleaning up, ask "Do you want to wipe your chin or shall I?" instead of asking, "Can I wipe your chin?"
• Celebrate what they can do well. Don't focus on what they can't do. Don't remind them of what they used to do. Don't try to get them to act like they used to act. Make time for fun and togetherness in the present time, even if they forget quickly.
• When people with AD can't control unwanted behaviors, divert them to something else. For example, say, "Let's do this now, over here," rather than trying to tell them why they 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 their past experiences and habits. Make current routines as much like the past as possible.

How should I respond to a problem behavior?

Remember that unwanted behavior is a symptom of the disease. Don't take it personally.

Who is the behavior is affecting? Is the behavior really a problem or not? For example, a person who talks to an imaginary person but does not bother other people does not have a problem behavior. Unwanted behavior may include things like:

• arguing with another resident or a family member
• using foul language
• pacing
• calling out for help
• resisting personal care, such as bathing or help going to the bathroom
• being restless at night
• hitting other people.

Change the way you respond, rather than trying to change their behavior. People with AD are not aware that their behavior is inappropriate. People with AD will often mirror the emotions of the people around them. If you are calm, they will be calm. If you are upset or angry, it may increase agitation in a person with AD. The way you respond can have a calming effect or make the situation worse. Do not try to argue or explain what is happening. Rather, divert their attention, stay calm, and reassure them. Use a slow, calm tone of voice. Avoid sudden moves with your hands or body.

Change any routines that may have started the behavior. Plan events to be at the best time of the day for them. Provide frequent breaks from stressful activities, provide snacks, or return to a nonstressful familiar activity. Since people with AD may not know when they have a full bladder, take them to the toilet on a regular schedule.

Change the surroundings if you think it may 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 higher than expected. For a person who rummages through drawers, provide a special drawer, dresser, or closet for items that he or she can rummage through.

Medicine is not the best answer for every health or behavior problem. Many unwanted behaviors in persons with AD, such as pacing, wandering, and calling out cannot be helped with medicines. Healthcare providers try to avoid medicines that could cause serious side effects. These may include antihistamines, antispasmodics, antipsychotics, medicines to treat incontinence, and sleeping pills. Medicines generally are used only when other approaches have failed. Some medicines can make problems like agitation and confusion worse. In some situations, however, medicine may be the best way to manage problems such as depression and distorted thinking.

What help is available in my community?

Ask your healthcare provider about local agencies that provide assistance for caregivers. The local Area Agency on Aging, along with home healthcare agencies and geriatric care management companies provide information. Your local chapter of the Alzheimer's Association is also a great source of information and support. You also can get help through the Retired Senior Volunteers Program, senior centers, or the Eldercare Locator Hotline. A variety of services may be available such as:

• homemakers
• home health aides
• companions
• licensed practical nurses or registered 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. Sometimes 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 a few weeks. Brief respite care stays in nursing homes can also be arranged through your healthcare provider. 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. Call your local Area Agency on Aging or the Alzheimer's Association for information.

What can I do to take care of myself?

It is 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.

Topics discussed in support groups usually focus on feelings about caregiving, ideas to help you, and other issues related 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.

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.

Ask friends or neighbors to stay with your loved one so you are able to attend your group. Some support groups may also offer care for your loved one during the time the group meets. Remember, it is as important to care for yourself as it is to care for the person with AD.