End-Stage Alzheimer’s Disease: Tips for Caregivers

by Alzheimer’s Association Minnesota-North Dakota Chapter

Alzheimer’s disease is a progressive, degenerative, neurological disease. Progressive, yes. It is much more than “being a little bit forgetful.” The disease slowly robs a person of their ability to perform long practiced skills, recall memories and the ability to care for him or herself. As people with Alzheimer’s disease live longer into the end stage of the disease, it is important for families and caregivers to recognize symptoms of the late stage and practice approaches for providing late stage care in their efforts to promote quality of life, preserve dignity and provide comfort.

The following is a list of progressed changes associated with the end stage of Alzheimer’s disease:

• Has difficulty eating and swallowing
• Needs assistance walking and eventually is unable to walk
• Needs full-time help with personal care
• Is vulnerable to infections, especially pneumonia
• Loses the ability to communicate with words

The following approaches to providing late and end stage care are from the Alzheimer’s Association’s website:

Skin & Body Health
Relieve body pressure and improve circulation by changing the person’s position at least every two hours. Make the person comfortable and keep his or her body aligned. Use pillows to support arms and legs. Learn how to lift the person. Avoid injury by seeing a health care professional about the proper way to lift and turn a person with dementia.

Keep skin clean and dry. Since skin can tear or bruise easily, use gentle motions and avoid friction when cleaning. Wash with mild soap and blot dry. Check daily for rashes, sores or breakdowns. Use pillows or pads to protect bony areas such as elbows, heels and hips. If using moisturizer, apply gently over bony areas; do not massage the lotion into these areas.

Maintain range of motion in the joints. “Freezing” of the joints (limb contractures) can occur when a person is confined to a chair or bed. Sometimes, it is helpful to try range of motion exercises, such as carefully and slowly moving arms and legs two to three times a day while the person’s skin and muscles are warm (like right after bathing). Be aware that range of motion exercises are not for everyone. Consult a doctor about whether they might be beneficial.

Bowel & Bladder Function
A person with late-stage Alzheimer’s disease may experience incontinence for a number of reasons, including a urinary tract infection or fecal impaction. First, see the doctor to rule out any medical problems.

Set a toileting schedule. Keep a written record of when the person goes to the bathroom, and when and how much the person eats and drinks. This will help you track the person’s natural routine, and then you can plan a schedule. If the person is not able to get to the toilet, use a bedside commode. Limit liquids before bedtime. Limit liquids at least two hours before bedtime, but be sure to provide adequate fluids throughout the day. Use incontinence products. Adult briefs and bed pads at night can serve as a backup to the daytime toileting schedule.

Monitor bowel movements. It is not necessary for the person to have a bowel movement every day, but if there are three consecutive days without a bowel movement, he or she may be constipated. In such instances, it may help to add natural laxatives to the diet, such as prunes or fiber-rich foods (bran or whole-grain bread).

Foods & Fluids
Everyone needs to eat nutritious foods and drink enough fluids to be healthy. But a person with late-stage Alzheimer’s may have trouble swallowing, which may cause food or drink to get into the airway and lungs. This can lead to pneumonia. To help the person eat and drink safely, make a quiet and calm eating environment. Serve meals away from TV and other distractions. If the person can eat at the table, use a simple place setting.

Allow plenty of time for eating. Allow at least one hour for meals. Don’t rush the person or force him or her to eat. Smaller meals or snacks throughout the day may work better than three bigger meals.

Make sure the person is in a comfortable, upright position. To aid digestion, keep the person upright for 30 minutes after eating. Adapt foods. Consult with the doctor to find foods that can be chewed and swallowed easily and safely.

Encourage self-feeding. Sometimes a person needs cues to get started. Begin by putting food on a spoon, gently putting his or her hand on the spoon, and guiding it to the person’s mouth. Assist the person with feeding, if needed. Alternate small bites with fluids. Make sure it’s all swallowed before continuing. You may need to remind the person to chew or swallow.

Encourage fluids. The person may not always realize that he or she is thirsty. If the person has trouble swallowing water, try fruit juice, gelatin, sherbet or soup. Make liquids easier to swallow. Swallowing problems put a person with dementia at higher risk for choking. Make liquids thicker by adding cornstarch, unflavored gelatin or food thickeners (available at pharmacy and health care supply stores) to water, juice, milk, broth and soup.

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.

Monitor weight. While weight loss during the end of life is to be expected, it also may be a sign of inadequate nutrition, another illness or medication side effects. See a doctor to have weight loss evaluated.

Infections & Pneumonia
The inability to move around in late-stage Alzheimer’s disease can make a person more vulnerable to infections. To help prevent infections, keep the teeth and mouth clean. Good oral hygiene reduces the risk of bacteria in the mouth that can lead to pneumonia. Brush the person’s teeth after each meal. If the person wears dentures, remove them and clean them every night. Also, use a soft toothbrush or moistened gauze pad to clean the gums, tongue and other soft mouth tissues.

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

Protect against flu and pneumonia. The flu (influenza) can lead to pneumonia (infection in the lungs). It’s vital for the person as well as caregivers to get flu vaccines every year to help reduce the risk. A vaccine to guard against pneumococcal pneumonia is also available. (Usually, only one dose is needed, but in certain circumstances, a second dose may be given five or more years after the first dose.)

Pain & Illness
In late-stage Alzheimer’s, the person has more difficulty communicating pain. If you suspect pain or illness, see a doctor as soon as possible to find the cause. In some cases, pain medication may be prescribed.

To recognize pain and illness look for physical signs of pain, such as pale skin tone, 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. Gestures, spoken sounds and facial expressions (wincing, for example) may signal pain or discomfort. Watch for changes in behavior. Anxiety, agitation, shouting and sleeping problems can all be signs of pain.

Editor’s Note: At Hospice of the Red River Valley, we’ve been privileged to partner with the Alzheimer’s Association on a number of educational programs. We have asked the Alzheimer’s Association to share this information with our readers who may be facing the challenges of caring for a loved one with Alzheimer’s.