Intergenerations: Steps to Caring for a Person with Late-Stage Alzheimer's Disease

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Steps to Caring for a Person with Late-Stage Alzheimer's Disease

The following excerpt was reprinted from the Action Series, Steps to Caring for a Person with Late-Stage Alzheimer's Disease. To contact the Alzheimer's Association to learn more about publications and services call toll-free: (800) 272-3900, visit their website or email the Association at info@alz.org.

The late stage of Alzheimer's may last anywhere from several weeks to several years. Intensive, around-the-clock assistance is usually required. Caring for the person with Alzheimer's disease is most successful when the focus is on preserving quality of life and dignity and treating the person with compassion and respect.

In the last stage of Alzheimer's disease, a person usually:

Has difficulty eating and swallowing

Needs assistance walking and eventually becomes bed-ridden or chair-bound

Needs full-time help with personal care, including toileting

Is vulnerable to infections and pneumonia

Loses the ability to communicate with words

The following information will help families to provide for the person's basic care and comfort needs and to maintain a connection with their loved one.

ENCOURAGING FOOD AND LIQUID INTAKE

Nutrition and hydration are important in maintaining a person's physical well being. However, a person with late-stage Alzheimer's may have difficulty swallowing food and liquids. This may cause aspiration into the airway and lungs and, eventually pneumonia. Here are some suggestions to help the person eat and drink safely:

Provide a quiet and calm environment.

Serve meals away from the television and other distractions. If the person can continue to dine at the table, keep the setting simple, with a plate or bowl, placemat, cup, and utensils.

Allow adequate time for meals.

Mealtimes may last longer than in previous stages of the disease. Allow at least one hour for mealtimes, and do not rush the person or force him or her to eat. You may want to see if the person prefers smaller meals or snacks throughout the day rather than three bigger meals.

Seat the person comfortably.

Make sure the person is in a comfortable, upright position. To aid digestion, keep him or her in this position for 30 minutes after eating.

Adapt foods to the person's needs.

Choose foods that are soft and can be chewed and swallowed easily. The person may prefer bite-sized finger foods, such as slices of cheese, tater tots, or chicken nuggets. If a person can no longer eat solid food, mash or puree it in a blender.

Encourage self-feeding.

Sometimes a person needs cues to get started. Try demonstrating eating by lifting the spoon to your mouth or using hand-over-hand prompting. Or, start the person by putting food onto the spoon, gently placing the person's hand on it, and guiding it to his or her mouth.

Assist the person with feeding if needed.

Offer the food or liquid slowly and make sure it's swallowed before continuing. Try alternating small bites of food with a drink. You may have to remind the person to chew or swallow. Avoid putting your fingers in the person's mouth, in case he or she bites down.

Encourage fluid intake.

A person with the disease may not always realize that he or she is thirsty or may forget to drink water or other fluids. If the person has trouble swallowing water, substitute fruit juice, gelatin, sherbet, or soup instead. Check the temperature of warm or hot liquids before the person consumes them.

Thicken liquids.

The person with Alzheimer's disease is at a higher risk for choking due to swallowing problems. Thicken liquids by adding a little cornstarch or unflavored gelatin to water, juice, milk, broth and soup. You can also purchase commercial food thickeners at a pharmacy or health care supply store. You may want to try serving pudding or ice cream, or substitute milk with plain yogurt.

Monitor weight.

Weight loss may indicate inadequate nutrition, another illness, or medication side effects. Consult the physician to determine the cause of the person's weight loss.

Know what to do if the person chokes.

Difficulty swallowing can lead to coughing and choking. Be prepared for an emergency and learn the Heimlich maneuver. Instructional classes are typically available through your local hospital or community center.

MAINTAINING A HEALTH SKIN AND BODY

A person in the late stage of the disease can become bed-ridden or chair-bound. A lack of mobility may lead to skin breakdown, pressure sores, and contractures. Here are some ways to help maintain the person's skin and body condition:

Alleviate body pressure.

Change the person's position at least every two hours to relieve pressure and improve skin moisture. Make sure the person is comfortable and is kept in good body alignment. Use pillows to support arms and legs. Consult a health care professional about the proper technique to life and turn you loved one.

Keep the skin clean and dry.

The person's skin can tear or bruise easily. Use minimal force and friction when cleaning fragile skin. Wash the skin with mild soap and blot dry. Check the skin daily for rashes, sores, or skin breakdowns.

Protect bony areas.

Protect elbows, knees, hips and other bony areas with pillows or pads. If you use moisturizer on the person's skin, apply it gently over bony areas; do not massage the lotion into these areas.

Prevent contractures.

Limb contractures or "freezing" of the joints can occur when a person is confined to a chair or bed. To maintain the person's range of motion in the joints, carefully and slowly move his or her arms and legs two to three times a day. Perform these exercises when the person's skin and muscles are warm, such as immediately after bathing. A physical therapist can show you the proper technique for range of motion exercises. Call the local chapter of the Alzheimer's Association to refer you to a health care professional in your community.

MAINTAINING BLADDER AND BOWEL FUNCTION

A person with Alzheimer's may experience incontinence due to such factors as a urinary tract infection or fecal impaction. After consulting with a physician to rule out any medical problems, try the following suggestions for helping the person maintain bladder and bowel function:

Set a toileting schedule.

Keep a written record of when the person goes to the bathroom and when and how much he or she eats and drinks. This will help you determine the person's natural toileting routine. If the person is not able to travel to the toilet, use a bedside commode.

Eliminate caffeinated drinks.

Beverages with caffeine, such as coffee, cola, and tea, act as diuretics and can stimulate urination.

Limit liquids before bedtime.

Limit liquids at least two hours before bedtime, but be sure to provide adequate hydration throughout the day.

Use absorbent and protective products.

Use adult briefs and bed pads at night as a backup to the daytime toileting schedule.

Monitor the frequency of bowel movements.

The person need not have a bowel movement every day. If he or she goes three days without a bowel movement, however, the person may be constipated. Adding natural laxatives to the person's diet, such as prunes, or fiber-rich foods, such as bran or whole grain breads, may help.

DECREASING THE RISK OF INFECTIONS AND PNEUMONIA

Immobility in the last stage of Alzheimer's disease can make a person more vulnerable to infections. Here are some things you can do to prevent them.

Pay careful attention to oral hygiene.

Good oral health reduces the risk of bacteria in the mouth, which can lead to infection. Brush the person's teeth after each meal. If the person wears dentures, remove and clean them every night.

Clean all soft tissues of the mouth.

Use a soft toothbrush or moistened gauze pad to clean soft tissues of the mouth (e.g., gums and tongue) at least once a day to prevent tooth decay and gingivitis.

Treat cuts and abrasions immediately.

Clean cuts with warm soapy water and apply an antibiotic ointment. If the cut is deep, seek the help of a medical professional.

Protect against the flu and pneumonia.

Because influenza, or the flu, can lead to pneumonia, the person and his or her caregivers can obtain a yearly flu vaccine to help reduce the risk. Also, there is a vaccine against pneumococcal pneumonia that an individual can receive every five years.

RECOGNIZING PAIN OR ILLNESS

Promoting quality of life means keeping those in the late stage of Alzheimer's disease comfortable. However, persons in this stage of the disease may have difficulty communicating their pain. Here are some ways to recognize pain:

Look for physical signs.

A pale or flushed skin tone; dry, pale gums; mouth sores; vomiting; feverish skin; or swelling of any part of the body can indicate illness.

Pay attention to nonverbal signs and body language.

Keep track of the person's gestures, vocalizations, and facial expressions (e.g., wincing) that may indicate pain or discomfort.

Be alert for changes in behavior.

Anxiety, agitation, shouting, and sleep disturbances can all indicate pain.

Consult the physician to determine the cause of the person's pain. In some cases, pain medication may be prescribed.

STAYING CONNECTED TO THE PERSON WITH ALZHEIMER'S DISEASE

When persons with late stage Alzheimer's have lost most of their cognitive abilities, they experience the world through their senses. Although you may not be able to communicate with them verbally, there are many things you can do to show the person reassurance and love:

Comfort by touch.

Touch can be a powerful connector. Hold your loved one's hand; give a gentle massage to the hands, legs, feet; give a kiss; or brush his or her hair.

Stimulate the senses.

The person may enjoy the smell of a favorite perfume, flower, food, or scented lotion of the feel of stroking a beloved pet or fabrics with different textures. If the person can walk with assistance or uses a wheelchair, he or she may enjoy going outside to see a garden or watch birds. You can also position the person to gaze outside a window, being careful that the sun is not too bright or will make the person too warm.

Use your voice to soothe.

It does not matter what you say but, rather, how you say it. Speak gently and with affection. Your tone can help the person feel safe and relaxed.

Play music and videos.

Choose music your loved one enjoyed when he or she was a young adult or something from his or her ethnic or spiritual background. Videos can also be relaxing to the person with Alzheimer's disease. Select one with scenes of nature and soft, calming sounds.

Read to the person.

Even if the person does not understand the words, the tone and rhythm of your voice can be soothing. Read a favorite story, poem, scripture passage, or blessing.

Reminisce and share.

Fill a box with photographs and items that represent the person's interests, favorite activities, or past work or military history. Have the person take out an item and share with him or her the significance of or story about the item. An example might be a family photograph from a favorite vacation, a recipe card with a traditional family dish that is made during the holidays, or a military medal and why the person received it.

DECIDING TO MOVE YOUR LOVED ONE TO A NEW HOME

By the time your loved one reaches the late stage of Alzheimer's disease, it is likely that you have been caring for him or her for m any years. During this time problems may occur that lead to moving a person into a residential care setting. For example, you may become ill, preventing you from being able to care for the person.

Another reason for deciding to move into a new care setting is the amount of time required to care for a person in the late stages of Alzheimer's disease. It is common for the person to need 24-hour assistance. If there is no one with whom to share caregiving responsibilities, a sole caregiver may be unable to meet the needs of their loved ones.

If you are thinking of moving your loved one to a long-term care setting, call your local chapter of the Alzheimer's Association. Staff can answer your questions, help you through issues regarding transitioning your loved on to a residential are setting, and refer you to local support groups.

TIPS FOR CARING FOR A PERSON WITH LATE-STAGE ALZHEIMER'S DISEASE:

Focus on what the person is still able to do or what the person still enjoys. For example, the person may not be able to sing a favorite song, but he or she may be able to tap his or her feet to the music.
Learn techniques for lifting and transferring individuals with limited mobility to prevent injury to yourself and your loved one. Call your local chapter of the Alzheimer's Association for a referral to a health care professional in your community.
Learn techniques for lifting and transferring individuals with limited mobility to prevent injury to yourself or your loved one. Call your local chapter of the Alzheimer's Association for a referral to a health care professional in your community.
To ensure proper nutrition for the person with Alzheimer's, check with the person's physician to see if a supplement, such as a multivitamin or high protein drink, is needed.
If the person refuses to eat, try to determine the reason. It may be that the food is not appetizing or that he or she does not understand the purpose of food, fears eating, has sore teeth or gums or poorly fitting dentures, or does not feel well.
Use a bendable straw to help encourage the person to drink fluids.
If the person is losing weight, contact the physician.
Consider assistance from a family member, friend, or a hired home care nurse or health aide.
A person with late-stage Alzheimer's continues to need and benefits from interactions with others. Your presence, along with that of other family members, friends, and clergy, can reassure and comfort the person.

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Contact Inter-Generations at intergens@cox.net