How do you communicate with late stage dementia?

When a person moves to the later stages of Alzheimer's disease, caregiving may become more difficult. This article offers ways to adjust to the changes that take place during severe or late-stage Alzheimer's.

On this page:

• How to connect with the person
• When the person with Alzheimer's can't move
• How to make sure the person eats well
• What to do about swallowing problems
• What to do about incontinence
• How to avoid dental, skin, and foot problems
• What to do about body jerking
• How to find help with caregiving

How to connect with the person

Communicating with a person with late-stage Alzheimer’s disease can take effort and patience. Though that person’s ability to respond may be limited, it is important to continue to interact:

• Continue to visit with the person even if responses are limited.
• Try to speak calmly and slowly; be aware of the tone and volume of your voice.
• Consider sharing familiar stories with the person.
• Make eye contact, say the person’s name and smile.
• Use other methods of communication besides speaking, such as gentle touching or massage.
• Have the person listen to music or calming nature sounds.

Learn more about how to communicate with a person who has Alzheimer's disease.

When the person with Alzheimers can't move

During the later stages of Alzheimer’s disease, a person may lose the ability to move and spend much of his or her time in a bed or chair. This lack of movement can cause problems such as pressure sores or bedsores, and stiffness of the arms, hands, and legs.

If the person with Alzheimer’s cannot move around on his or her own, contact a home health aide, physical therapist, or nurse for help. These professionals can show you how to move the person safely, such as changing positions in bed or in a chair.

A physical therapist can also 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 sores or bedsores.

To make the person 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 at least once every 2 hours if he or she is sitting up.
• Move the person at least once every hour if he or she is lying down.
• Use a lap board to rest the person's arms and support the upper body when he or she is sitting up in bed or in a chair.
• Use a chair with arm rests to help reduce the chances of the person falling. The arms of a chair may also help with standing.
• Give the person something to hold, such as a washcloth, 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.

To keep from hurting yourself when moving someone with Alzheimer's disease:

• Know your strength when lifting or moving the person and don't try to do too much.
• Try to explain to the person what you plan to do before you begin to move them.
• Bend at the knees and then straighten up by using your thigh muscles instead of 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.
• Take small steps to move the person from one seat to another. Don't twist your body.
• Consider using a transfer belt to help move the person. You can find transfer belts at a medical supply store, drugstore, or online. 
• Read more tips on how to move the person safely from a bed to a wheelchair.

How to ensure the person eats well

In the later stages of Alzheimer’s disease, many people lose interest in food and caregivers may notice changes in how or when they eat. They may not be aware of mealtimes, know when they've had enough food, or remember to cook. If they are not eating enough different kinds of foods, they may not be getting the nutrients they need to stay healthy.

Here are some suggestions to help a person with late-stage Alzheimer's eat better. Remember that these are just tips—try different things and see what works best for the person:

• Serve bigger portions at breakfast because it's the first meal of the day.
• Offer several smaller meals throughout the day.
• Serve meals at the same time each day.
• Make the eating area quiet. Turn off the TV or radio.
• Control between-meal snacks. Lock the refrigerator door and food cabinets if necessary.
• If the person has dentures, make sure they fit. Loose dentures or dentures with bumps or cracks may cause choking or pain, making it harder to eat. Remove poorly fitting dentures until the person can get some that fit.
• Let the person's doctor know if they lose a lot of weight, for example, if he or she loses 10 pounds in a month.

You can also try different ways of preparing the person's plate. For example:

• Put food on the plate before placing it in front of the person.
• Offer just one food at a time instead of filling the plate or table with too many things.
• Use colorful plates that contrast with the color of the food to help the person see what is on the plate.
• If additional utensils cause confusion, try giving just a spoon to the person.
• Use a plate guard (sometimes called a "spill guard") if the person has trouble getting food onto utensil.
• Move the plate around if he or she seems to only eat from one side of the plate.

If the person needs help eating, you might try to:

• Give the person small amounts of food at a time.
• Describe the food he or she is eating.
• Sit to the side of the person while helping him or her eat because sitting in front may be intimidating.
• Encourage eating by switching between a bite of the meal and a bite of something sweet.
• Make sure the person has swallowed before introducing more food. Sometimes food can be pocketed in the cheeks.

When choosing foods to eat and liquids to drink, these suggestions might help:

• 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.
• If weight loss is a concern, 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, discount stores, and online. You can also 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 might be best.
• If a person is not getting enough calories, talk with the doctor or nurse about diet supplements and what kinds might be best.
• Consider adding extra healthy fats, such as olive oil and avocados, into a person's diet if they need more calories. Check with the doctor about how much and what kinds of fat to use.
• If the person has heart diseasediabetes or high blood pressure, check with the doctor or a nutrition specialist about which foods to limit.
• Have the person take a multivitamin — these come in different forms such as a tablet, capsule, powder, liquid, or injection — that adds vitamins, minerals, and other important nutrients to a person's diet. Consider which will be easiest for the person to take.

What to do about swallowing problems

As Alzheimer's disease progresses to later stages, the person may no longer be able to chew and swallow easily. This is a serious problem. Difficulty with swallowing may lead to choking or cause food or liquid to go into the lungs, which is known as aspiration. This can cause pneumonia, which can lead to death.

The following suggestions may help with swallowing:

• Make sure to cut food into small pieces and that it is soft enough for the person to eat.
• Grind or blend food to make it easier to eat.
• Offer soft foods, such as yogurt, applesauce, mashed avocado, sweet potatoes, and bananas.
• Don't use a straw, which may cause more swallowing problems. Instead, have the person drink small sips from a cup.
• Offer drinks of different temperatures — warm, cold, and room temperature—to see which might be easiest for the person to drink.
• Don't hurry the person. He or she needs time to chew and swallow each mouthful before taking another bite.
• Encourage the person to feed themselves as much as possible during meals. If the person needs support, try using overhand, underhand, or direct hand feeding approaches.
• Don't feed a person who is drowsy or lying down. He or she should be in an upright, seated position during the meal and for at least 20 minutes after the meal.
• Say "swallow" to remind him or her to swallow.
• Find out if the person's pills can be crushed or taken in another form.

If you are concerned about the person's swallowing, speak with his or her doctor, who may recommend a speech-language pathologist or other specialists for evaluation.

Helping the person with Alzheimer's eat can be exhausting. Planning meals ahead and having the food ready can make this task a little easier for caregivers. Also, remember that people with Alzheimer's disease 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, keep in mind that the person may not be hungry when you're ready to serve food.

What to do about incontinence

Incontinence means a person can't control his or her bladder and/or bowels. This may happen at any stage of Alzheimer's disease, but it is more often a problem in the later stages. Signs of this problem are leaking urine, problems emptying the bladder, and soiled underwear and bed sheets. Be sure to let the doctor know if this happens. He or she may be able to treat the cause of the problem.

Accidents happen. Try to be understanding when they occur. Stay calm and reassure the person if he or she is upset. Incontinence supplies, such as adult disposable briefs or underwear, bed protectors, and waterproof mattress covers, may be helpful. Learn more about dealing with incontinence.

Dental, skin, and foot problems

Dental, skin, and foot problems may take place in early and moderate stages of Alzheimer's disease, but most often happen during late-stage Alzheimer's disease.

Dental problems. As Alzheimer's disease symptoms worsen, people will need help taking care of their teeth or dentures. Brushing and flossing help to maintain oral health and reduce bacteria in the mouth, which may decrease the risk of pneumonia.

Make sure the person's teeth and teeth surfaces are gently brushed at least twice a day with fluoride toothpaste. The last brushing session should take place after the evening meal or after any medication is given at night. You may find that using a child's size toothbrush is easier for the person.
It is also best to floss once per day, if possible. If this is distressing to the person, an interdental brush, which is a small brush designed to clean between the teeth. Try to 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 regular dental checkups for as long as possible. Some people need medicine to calm them before they can see the dentist. Calling the dentist beforehand to discuss potential sensitivities may also be helpful.

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 them, you can:

• Move the person at least once every 2 hours if he or she is sitting up.
• Move the person at least once 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 or 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 Alzheimer's to take care of his or her feet. If the person cannot, 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.

What to do about body jerking

Sudden twitching or jerking, known as myoclonus, is another condition that sometimes happens with Alzheimer's. 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.

Learn more about care decisions and medical options at the end of life.

Read about this topic in Spanish. Lea sobre este tema en español.

How to find help for caregiving

As the person moves through the stages of Alzheimer's, he or she will need more care. You may not be able to meet all his or her needs at home anymore. It's important to know your limits, take care of yourself, and to seek help whenever you need it. Learn more about getting help with Alzheimer's caregiving and finding ways to care for yourself. If caring for the person has become too much for you, you can also learn more about finding long-term care for a person with Alzheimer's.
 

For More Information About Coping with Late-Stage Alzheimer's

NIA Alzheimer’s and related Dementias Education and Referral (ADEAR) Center
800-438-4380
[email protected]
www.nia.nih.gov/alzheimers
The NIA ADEAR Center offers information and free print publications about Alzheimer’s and related dementias for families, caregivers, and health professionals. ADEAR Center staff answer telephone, email, and written requests and make referrals to local and national resources.

Eldercare Locator
800-677-1116
[email protected]
https://eldercare.acl.gov

National Respite Locator Service
www.archrespite.org/respitelocator

Hospice Foundation of America
800-854-3402
[email protected]
www.hospicefoundation.org

National Association for Home Care and Hospice
202-547-7424
www.nahc.org

National Hospice and Palliative Care Organization
703-837-1500
[email protected]
www.nhpco.org

This content is provided by the NIH National Institute on Aging (NIA). NIA scientists and other experts review this content to ensure it is accurate and up to date.

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