Coping with Late-Stage AD

When a person moves to the later stages of AD, caregiving may become even harder. This section offers ways to cope with changes that take place during severe or late-stage AD.

If caring for the person has become too much for you, see the chapter on "When You Need Help" for possible sources of help.

When the person with AD can't move

If the person with AD can't move around on his or her own, contact a home health aide, physical therapist, or nurse. Ask the doctor for a referral to one of these health professionals. They can show you how to move the person safely, such as changing his or her position in bed or in a chair. Also, a physical therapist can show you how to move the person's body joints using range-of-motion exercises. During these exercises, you hold the person's arms or legs, one at a time, and move and bend it several times a day. Movement prevents stiffness of the arms, hands, and legs. It also prevents pressure or bedsores.

How to make someone with AD more comfortable

Here are some ways to make the person with AD more comfortable:

• Buy special mattresses and wedge-shaped seat cushions that reduce pressure sores. You can purchase these at a medical supply store or drugstore, or online. Ask the home health aide, nurse, or physical therapist how to use the equipment.
• Move the person to a different position at least every 2 hours.
• Use a lap board to rest the person's arms and support the upper body when he or she is sitting up.
• Give the person something to hold, such as a wash cloth, while being moved. The person will be less likely to grab onto you or the furniture. If he or she is weak on one side, stand on the weak side to support the stronger side and help the person change positions.

How to keep from hurting yourself when moving the person with AD

To keep from hurting yourself when moving someone with AD:

• Know your strength when lifting or moving the person; don't try to do too much. Also, be aware of how you position your body.
• Bend at the knees and then straighten up by using your thigh muscles, not your back.
• Keep your back straight and don't bend at the waist.
• Hold the person as close as possible to avoid reaching away from your body.
• Place one foot in front of the other or space your feet comfortably apart for a wide base of support.
• 
• Use little steps to move the person from one seat to another. Don't twist your body.
• Use a transfer or "Posey" belt, shown on the right. You can buy this belt at a medical supply store or drugstore. To move the person from a lying to a sitting position, slide him or her to the edge of the chair or bed by wrapping the transfer belt around the person's waist. Face the person and place your hands under the belt on either side of his or her waist. Then bend your knees, and pull up by using your thigh muscles to raise the person from a seated to a standing position.

How to make sure the person eats well

In the later stages of AD, many people lose interest in food. You may begin to notice some changes in how or when the person eats.

He or she may not:

• Be aware of mealtimes
• Know when he or she has had enough food
• Remember to cook
• Eat enough different kinds of foods

This means the person may not be getting the foods or vitamins and minerals needed to stay healthy. Here are some suggestions to help the person with late-stage AD eat better. Remember that these are just tips. Try different things and see what works best for the person.

You might try to:

• Serve meals at the same time each day.
• Make the eating area quiet. Turn off the TV, CD player, or radio.
• Offer just one food at a time instead of filling the plate or table with too many things.
• Use colorful plates so the person can see the food.
• Control between-meal snacks. Lock the refrigerator door and food cabinets if necessary. Put masking tape near the top and/or bottom of the doors.
• Make sure the person's dentures are tight fitting. Loose dentures or dentures with bumps or cracks may cause choking or pain, making it hard to eat. Take poorly fitting dentures out until the person can get dentures that fit.
• Let the doctor know if your family member loses a lot of weight, for example, if he or she loses 10 pounds in a month.

Here are specific suggestions about foods to eat and liquids to drink:

• Give the person finger foods to eat such as cheese, small sandwiches, small pieces of chicken, fresh fruits, or vegetables. Sandwiches made with pita bread are easier to handle.
• Give him or her high-calorie, healthy foods to eat or drink, such as protein milk shakes. You can buy high-protein drinks and powders at grocery stores, drugstores, or discount stores. Also, you can mix healthy foods in a blender and let the person drink his or her meal. Use diet supplements if he or she is not getting enough calories. Talk with the doctor or nurse about what kinds of supplements are best.
• Try to use healthy fats in cooking, such as olive oil. Also, use extra cooking oil, butter, and mayonnaise to cook and prepare food if the person needs more calories. If the person has heart disease, check with the doctor about how much and what kinds of fat to use.
• Keep certain foods out of reach for people on a sugar-restricted (diabetic) or salt-restricted diet. Limit ketchup, vinegar, oil, salt, and pepper.
• Have the person take a multi-vitamin—a tablet, capsule, powder, liquid, or injection that adds vitamins, minerals, and other important things to a person's diet.
• Serve bigger portions at breakfast because it's the first meal of the day.

What to do about swallowing problems

As AD progresses to later stages, the person may no longer be able to chew and swallow easily. This is a serious problem. If the person chokes on each bite of food, there is a chance that the food could go into the lungs. This can cause pneumonia, which can lead to death.

The following suggestions may help with swallowing:

• Make sure you cut the food into small pieces and make it soft enough to eat.
• Grind food or make it liquid using a blender or baby food grinder.
• Offer soft foods, such as ice cream, milk shakes, yogurt, soups, applesauce, gelatin, or custard.
• Don't use a straw; it may cause more swallowing problems. Instead, have the person drink small sips from a cup.
• Limit the amount of milk the person drinks if it tends to catch in the throat.
• Give the person more cold drinks than hot drinks. Cold drinks are easier to swallow.
• Don't give the person thin liquids, such as coffee, tea, water, or broth, because they are hardest to swallow. You can buy Thick-It® at most pharmacies. You add Thick-It® to liquids to make them thicker. You also can use ice cream and sherbet to thicken liquids.

Here are some other ideas to help people swallow:

• Don't hurry the person. He or she needs time to chew and swallow each mouthful before taking another bite.
• Don't feed a person who is drowsy or lying down. He or she should be in an upright, sitting position during the meal and for at least 20 minutes after the meal.
• Have the person keep his or her neck forward and chin down when swallowing.
• Stroke (gently) the person's neck in a downward motion and say, "swallow" to remind him or her to swallow.
• Find out if the person's pills can be crushed or taken in liquid form.

Helping the person with AD eat can be exhausting. Planning meals ahead and having the food ready can make this task a little easier for you. Also, remember that people with AD may not eat much at certain times and then feel more like eating at other times. It helps to make mealtime as pleasant and enjoyable as possible. But, no matter how well you plan, the person may not be hungry when you're ready to serve food.

Dental problems

As AD gets worse, people need help taking care of their teeth or dentures.

Check the person's mouth for any problems such as:

• Sores
• Decayed teeth
• Food "pocketed" in the cheek or on the roof of the mouth
• Lumps

Be sure to take the person for dental checkups. Some people need medicine to calm them before they can see the dentist.

Body jerking

Myoclonus is a condition that sometimes happens with AD. The person's arms, legs, or whole body may jerk. This can look like a seizure, but the person doesn't pass out. Tell the doctor right away if you see these signs. The doctor may prescribe one or more medicines to help reduce symptoms.

Skin problems

Once the person stops walking or stays in one position too long, he or she may get skin or pressure sores.

To prevent skin or pressure sores, you can:

• Move the person at least every two hours if he or she is sitting up.
• Move the person at least every hour if he or she is lying down.
• Put a 4-inch foam pad on top of the mattress.
• Check to make sure that the foam pad is comfortable for the person. Some people find these pads too hot for sleeping and may be allergic to them. If the foam pad is a problem, you can get pads filled with gel, air, or water.
• Check to make sure the person sinks a little when lying down on the pad. Also, the pad should fit snugly around his or her body.

To check for pressure sores:

• Look at the person's heels, hips, buttocks, shoulders, back, and elbows for redness or sores.
• Ask the doctor what to do if you find pressure sores.
• Try to keep the person off the affected area.

Foot care

It's important for the person with AD to take care of his or her feet. If the person can't, you will need to do it.

Here's what to do:

• Soak the person's feet in warm water; wash the feet with a mild soap; and check for cuts, corns, and calluses.
• Put lotion on the feet so that the skin doesn't become dry and cracked.
• Cut or file their toenails.
• Talk to a foot care doctor, called a podiatrist, if the person has diabetes or sores on the feet.

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