Caring for Someone with Late-stage Alzheimer’s Disease

As Alzheimer’s disease progresses into the advanced stage, also known as late-stage Alzheimer’s, your loved one’s needs will become extensive. Their reliance on you will grow as they require assistance with all daily living tasks. Their ability to eat and walk around freely will decline and eventually cease. As your loved one becomes more inactive, they are more prone to infections, particularly pneumonia.

Planning Late-Stage Alzheimer’s Care

The decision on how to care for your loved one during late-stage Alzheimer’s is one of the most difficult decisions families face, as the care required may become more than you can handle at home.

It’s beneficial to have a conversation about long-term care with your loved one while they are still in the early stages of the disease and still capable of talking and thinking through these decisions and their wishes for life-sustaining treatments. Having these conversations early allows you time to prepare, gather the necessary information and be thoughtful in your decision-making process.

The compassionate support staff at Banner Alzheimer’s Institute and Banner Sun Health Research Institute, our memory care centers of excellence designated by the National Institute of Health, can provide a breadth of resources to meet you where you are and help you make an informed decision about long-term care for your loved one.

Caregiver Role During Late-Stage Alzheimer’s Disease

During late-stage Alzheimer’s, your role as a caregiver focuses on preserving dignity and quality of life.

Although a person in this stage typically loses the ability to talk and express their needs, research indicates that some core of the person's self may remain. This means you may be able to continue to connect throughout the late stage of the disease.

You can express your compassion and care through touch, sound, sight, taste and smell. Examples of this are:

• Playing their favorite music
• Reading from books that have meaning for them
• Looking at old photos together
• Preparing a favorite food
• Applying lotion with a favorite scent to their skin
• Brushing their hair or holding hands
• Sitting outside together on a nice day

Here are some guidelines to providing the best care for your loved one during this final stage:

Food and fluids: Eating and drinking is one of the most important facets of caregiving during late-stage Alzheimer’s. Your loved one won’t require as much food because of their inactivity. They may forget to eat or not have an appetite, making it even more important to ensure they are eating. Here’s how to make sure your loved one is eating and drinking:

• Urge your loved one to feed themselves. You can assist by putting food on a spoon, placing the spoon in their hand and helping guide the spoon to their mouth. If they have difficulty using utensils, serve them finger foods instead.
• Encourage eating by serving favorite foods or adding sugar to their food.
• Ensure they stay hydrated. Your loved one may forget to drink or may not even realize they are thirsty. In addition to water, juice, gelatin, sherbet or soup can help keep them hydrated. 
• If your loved one is having trouble swallowing, serve soft foods that can be chewed or swallowed easily. You can also thicken liquids, like water, juice and milk, by mixing in cornstarch or unflavored gelatin. Food thickeners are also available at pharmacies or health food stores.
• Always check the temperature of foods or liquids prior to serving to protect your loved one from accidental burns.
• Monitor your loved one’s weight. While weight loss is expected in late-stage Alzheimer’s, weight loss can be caused by malnutrition, side effects of medication or illness. If you are concerned about your loved one’s weight, discuss your concerns with the doctor.

Toileting: Your loved one may need to be walked to the restroom and guided through the process. They may also experience incontinence of bladder and bowel during late-stage Alzheimer’s. If they’re unable to get to the toilet, use a bedside commode or a brief. Here are some additional tips to help your loved one with toileting:

• Create a bathroom schedule. It may be helpful to record  when they use the bathroom and how much they eat or drink. This will help you determine their natural routine and plan a schedule around that.
• Limit liquids at least two hours before bedtime. To avoid dehydration at night, ensure you keep your loved one hydrated during the day.
• Monitor the frequency of bowel movements. While a daily bowel movement isn’t necessary, three or more days without a bowel movement can signal constipation. Fiber-rich foods, such as bran or whole-grain bread, and natural laxatives, like prunes, can help relieve constipation.
• Prevent accidents by using absorbent and protective products during the day, and adult disposable briefs and bed pads as needed during the day or night.

Skin and body health: Your loved one may eventually be unable to move around and will then become bedridden or chair-bound, causing their skin to break down or easily tear. Their inactivity may also cause bed sores, or pressure sores, and "freezing" of joints. Here’s how to help nourish and protect their skin:

• Change your loved one’s position every two hours at a minimum to relieve the pressure points between their body and the bed or chair and maintain proper circulation to help avoid bed sores. Use soft pillows to prop arms, legs, neck and torso as needed to ensure proper alignment and overall comfort. Seek guidance from a doctor, nurse or therapist to learn proper repositioning and lifting techniques.
• Keep the skin clean and dry. Wash skin with mild soap, taking extra care by using gentle motions and avoiding friction when cleaning. Pat the skin dry; do not rub. Check your loved one’s skin daily for rashes, sores or breakdowns. When using moisturizer on your loved one’s skin, apply with care. Do not massage their skin with the moisturizer, as it may be prone to tearing.
• Protect the bony areas of the body, including elbows, heels and hips, using soft pillows and pads.
• Prevent freezing of joints, also known as limb contractures, by helping your loved one do range-of-motion exercises two to three times daily when their muscles are warm, preferably after bathing.
• Ensure you discuss any exercises with your loved one’s doctor prior to starting.

Pneumonia and infections: Your loved one may be more prone to pneumonia and infections if they are inactive and unable to move around. Here are some tips to help prevent infections and pneumonia:

• Stay current with vaccinations: It’s important for both you and your loved one to get annual flu vaccines to protect against the flu, which can lead to pneumonia. Your loved one may also receive pneumococcal pneumonia vaccines once every five years, which protects against a severe bacterial lung infection. Your loved one may also receive COVID-19 vaccines.
• Clean cuts and scrapes immediately: Use soapy water, then apply an antibiotic ointment. If the cut is deep, seek professional medical help.
• Maintain good oral hygiene: Good oral hygiene will reduce your loved one’s risk of developing bacteria in the mouth, which can lead to pneumonia. Brush your loved one’s teeth after every meal to keep the teeth and mouth clean. If they use dentures, make sure you remove them nightly and clean them. Gums, the tongue and the cheeks should be cleaned with a soft toothbrush or gauze.

Pain and Illness: Your loved one will eventually have trouble communicating when they are in pain or not feeling well. The following guidelines will help provide clues to help you determine if they are in pain or not feeling well. If you believe they are in pain or coming down with an illness, schedule an appointment with a doctor as soon as possible. The doctor may prescribe pain medication in some cases.

• Physical signs of pain or illness include pale or flushed skin tone, mouth sores or dry, pale gums. If they are vomiting, have a fever or any parts of their body are swollen, you should call the doctor.
• Nonverbal signs of pain or sickness may include gestures to where the pain is originating from or facial expressions, such as grimacing or wincing.
• Behavioral changes, such as anxiety, agitation, trembling, shouting and problems with sleep, may indicate that your loved one is in pain or getting sick.

Additional caregiver resources, including support groups and event information, CARE T.I.P.S to learn strategies for various scenarios and financial and legal planning information, are available to help you care for your loved one with late-stage Alzheimer’s.