Patient education: Caring for someone with Alzheimer disease or dementia (The Basics)

What is dementia? — Dementia is the general term for a group of brain disorders that cause memory problems and make it hard to think clearly. The most common cause of dementia is Alzheimer disease. But there are other forms of dementia, too.

Learning that a loved one has Alzheimer disease, or another form of dementia, can be scary and stressful. This article has information that can help caregivers.

What plans should we make for the future? — After your family member is diagnosed with Alzheimer disease (or another form of dementia), you need to make plans for their:

●Living situation – If the person lives alone, make sure that they are safe and have the help they need to take care of themselves. A time will come when they cannot live alone, and it's important to plan for this. You might have them live at home with help, or move to a nursing home.

●Decision-making – Early on, your family member should choose a "power of attorney." A power of attorney is someone who can make decisions for the person when they are no longer able to. It's important for the power of attorney to talk to the person to understand what they would want in different situations, especially toward the end of life. For example, some people would want to be put on a breathing machine if they could not breathe on their own, while other people would not. It is hard to have these conversations. But it's important to have them as early as possible, while the person is still able to make their own decisions.

●Money – People have trouble understanding how to manage their money as their disease gets worse. If your family member takes care of their own money, it's important to check that they do it correctly. You will also need to make a plan for when they are unable to manage their money without help.

●Driving – If your family member still drives, talk with the doctor about when they should stop. The right time to stop is different for each person.

●Health care – Someone will need to help the person get to their medical appointments and follow their doctor's instructions. If they take medicines, you can help them create a routine for taking them when needed.

In Alzheimer disease, the symptoms get worse over time. It is important to be aware of this and change your plans regularly as needed.

How can I make the home safe? — To help keep your family member from getting hurt around the house, you can:

●Keep walkways clear of clutter to lower the risk of falling. If you have loose rugs, remove them or tack them down. Keep some lights on at night.

●Put a handrail and non-slip mat in the bathtub or shower. Over time, the person will likely need more help bathing or showering.

●Put child-proof locks on cabinets with dangerous items (such as matches, medicines, or sharp objects). You can also put child-proof covers on the stove.

●If there are guns or weapons in the home, make sure that they are locked in a place where the person cannot get to them.

How can I keep my family member from wandering away? — To keep them from wandering away or getting lost, you can:

●Lock the outside door. If your family member can unlock the door, put another lock on the door that they can't reach.

●Have them wear or carry identification at all times. Some people use a medical ID bracelet.

●Put a system in your home that lets you know when people enter or leave.

There are products available that use GPS technology to let you track where your family member is. The Alzheimer's Association also has a program to support caregivers and people who are at risk of wandering. They provide an identification bracelet, necklace, or tag your family member can wear. They can also help if a person does get lost. You can learn more online at: www.medicalert.org/alz.

How can I make daily activities easier? — To make your daily activities easier, you can:

●Schedule appointments, visits, and activities for times of the day when your family member is at their best.

●Do activities they enjoy or can still help with.

●Plan on taking extra time for activities or to get where you are going.

●Stick to a routine, and avoid new or crowded places.

●Use simple words, short sentences, and a calm voice (but don't use "baby talk"). When you give directions, give only 1 direction at a time.

●Avoid giving them too many choices. For example, offer only 2 choices for lunch.

●Buy clothes and shoes that are easy to put on and take off.

●Remember that it doesn't help to argue. Try to move on to something else.

How can I avoid bladder or bowel accidents? — In the earlier stages of the disease, you can limit accidents by:

●Having your family member use the toilet every few hours

●Not giving them drinks before bedtime

In the later stages of dementia, most people will need to wear a pad or adult diaper.

What if my family member isn't eating enough? — To get them to eat more, you can:

●Give them many small meals each day, instead of 3 large ones.

●Give them high-protein or high-calorie drinks, such as shakes.

●Make food easier to eat by putting it in a bowl or cutting it up.

●Try making the food taste better by adding spices, sweet and sour flavoring, or soy sauce.

As the disease gets worse, the person might need to be fed.

How can I help my family member sleep better at night? — To help them sleep better at night, you can:

●Not let them nap during the day.

●Make sure that they get physical activity and sunlight during the day. Even gentle forms of exercise, like walking, have benefits. Avoid exercise right before bedtime.

●Open the shades in the morning to let light in.

●Keep their wake-up time and bedtime the same every day. Don't have them go to bed too early. Older people require less sleep than younger people, and an early bedtime could lead the person to wake up too early.

●Keep the bedroom quiet, cool, and dark at night.

●Ask the doctor or nurse if any of your family member's medicines might be making their sleep worse.

What if my family member's behavior changes suddenly? — If the person's behavior changes suddenly, call the doctor or nurse. It could mean that they have an infection or another medical problem that requires treatment. That's because symptoms of Alzheimer disease often get worse when people get infections, especially bladder or lung infections.

What if I am having a hard time? — Taking care of someone with Alzheimer disease is a tough job, and it usually gets harder as the disease gets worse. It is normal to feel stressed, sad, or tired.

If you are having a hard time, let the doctor or nurse know so that they can find ways to get you help. Don't feel bad or guilty about asking for help. Ask for help right away if your family member hurts or threatens you.

Some ways you can get help:

●Take breaks from caregiving – If you have other relatives or friends who can help, ask them for support. Or you might choose to hire an aide to help you bathe, dress, or feed your family member. You can also find an adult day care program for your family member to go to during the day.

●Join a support group for caregivers of people with Alzheimer disease or dementia – It can help to talk to other people who are going through similar things.

Where can I learn more? — The Alzheimer's Association has a lot of information for caregivers. Their website is www.alz.org. Their toll-free phone number in the US is 1-800-272-3900.

More on this topic

Patient education: Dementia (including Alzheimer disease) (The Basics)
Patient education: Evaluating memory and thinking problems (The Basics)
Patient education: Advance directives (The Basics)
Patient education: Medical care during advanced illness (The Basics)
Patient education: Time to stop driving? (The Basics)

Patient education: Dementia (including Alzheimer disease) (Beyond the Basics)