Dementia: Caring for Someone with Dementia

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KEY POINTS

• Dementia is a gradual loss of the ability to think, remember, reason, and plan that commonly gets worse over time.
• Caring for a person with dementia can affect family life, careers, finances, and your mental and physical health. As a caregiver, you need help and support too. Learn about community resources, support groups, and respite care programs that can help you and the person you care for.

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What is dementia?

Dementia is a gradual loss of the ability to think, remember, reason, and plan.

Dementia is a group of symptoms. Many things can cause dementia, and the most common is Alzheimer’s disease. People with advanced or severe dementia will not be able to care for themselves. Their behavior and personality may also change.

Dementia is not a normal part of aging. As healthy people get older, they sometimes forget names, phone numbers, or where objects are. However, healthy older people usually remember or figure out how to look up a forgotten name or address. People with dementia forget things far more often. They also have much more trouble with problem-solving and thinking through things.

Dementia commonly gets worse over time and causes problems such as:

• Poor judgment and not being able to understand the results of one’s actions
• Trouble following instructions, staying with a task, paying bills, fixing meals, shopping, or taking medicines
• Loss of interest in food
• Less concern about looking neat and being clean
• Trouble washing up and getting dressed
• Wandering away from home or getting lost
• Being unable to control bowel movements or urination
• Being unsteady while walking, and falling
• Forgetting how to eat or having trouble chewing and swallowing
• Having a hard time speaking and thinking of the right words and sometimes becoming unable to speak
• Not recognizing friends and family members

In time, someone with dementia may become totally dependent on others for care.

What should I do as a caregiver?

Caring for someone with dementia takes extra patience and understanding. Here are some things that may help:

• Do what you can to simplify the person’s life. People with dementia do better with a regular routine. Keep routines and the surroundings the same if possible. Try to understand their past experiences and habits. Make current routines as much like the past as possible.
• Make the home safer, such as by removing throw rugs and making sure there is good lighting to decrease the risk of falling.
• Let the person do what he or she is able to do. Include them in decision making when possible. Speak clearly and simply and slowly. Break instructions down into small steps. You may need to repeat or rephrase your message to help the person understand.
• Reduce distractions. For example, turn off the radio or TV when you need to talk to the person, or when they are eating.
• Don’t plan long trips. Short day trips to familiar places can be fun. Long-distance travel may be tiring and disorienting.
• Try to limit the number of new people that are around at any one time. New people can increase stress for someone with dementia.
• Avoid the things that may cause unwanted behavior. For example, crowds and noise may increase anxiety. If you must take the person into a busy or crowded place, someone should be with them all the time.
• Multiple choices can be hard for people with dementia to handle. Give a limited number of simple choices. Ask “Do you want to wear your red shirt or the blue shirt?" for example.
• Listen to what the person with dementia is saying, but don't argue. Try to understand the feeling behind the person's words. 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.
• Let emotional moments happen, as long as the person with dementia is not being violent. Crying while feeling sad is OK. The person with dementia usually will stop crying after a short time. When the emotion passes, talk about something else or start a different activity.

How should I respond to problem behavior?

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

Change the way you respond, rather than trying to change the behavior. People with dementia do not know that their behavior is not OK. They will often mirror the emotions of the people around them. If you are calm, they will be calm. If you are upset or angry, they may get more upset. Do not try to argue or explain. It’s better to say, "Let's do this now, over here," rather than trying to tell them why they shouldn't do something. Speak in a slow, calm tone of voice. Avoid sudden movements with your hands or body.

Plan events for the best time of the day for the person with dementia. During stressful activities provide frequent breaks. Offer snacks or return to a nonstressful familiar activity.

Change the surroundings if you think it may prevent a problem behavior from happening. For example, if the person wanders, put several types of locks on doors or put the bolt up higher than expected. For a person who goes through drawers, provide a special drawer, dresser, or closet for items that he or she can sort through.

If the person seems to get worse over a few days, with more confusion and problem behaviors, they may be getting sick. Tell the healthcare provider what kinds of changes you notice. This helps the provider decide what testing to do.

Where can I get help as a caregiver?

Caring for a person with dementia can affect family life, careers, finances, and your mental and physical health. As a caregiver, you need help and support too.

Support groups can help by giving you a chance to meet others with similar experiences. Meetings provide information but are also a good way for you to get out of the house and be with other people. Ask friends or neighbors to stay with your loved one so you are free to attend a support group. Some groups may also offer care for the person with dementia during the meeting time.

Community resources are very important. To find these services, talk with your healthcare provider, county health department, or visiting nurses association. If your town has one, the senior center may be a good place to get information.

• Social workers find and organize help, including possible financial aid.
• Home healthcare agencies provide the services of nurses, medical social workers, health aides, and therapists.
• Training programs can help family and friends who care for a person with dementia.
• Out-of-home services include adult day care centers, mental health services, transportation; and nursing facilities.

Also make time for yourself so that you can be healthy and rested. Respite care programs provide a break to families who care for people with dementia at home. Many churches offer respite programs or other elder care assistance. Services can vary from a few hours to a few weeks. Adult day care programs offer care during daytime hours. Brief stays in nursing homes can also be arranged through your healthcare provider, though may not be covered by insurance.

You can get information about services in your area from your local Area Agency on Aging. You can also call the national Eldercare Locator at 1-800-677-1116.