The late stage of Alzheimer's disease 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
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 eat at the table, keep the setting simple.
Allow adequate time for meals
Consider serving smaller meals more often – do not rush the person or force him or her to eat.
Seat the person comfortably
To aid digestion, keep him or her in an upright 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. If the person can no longer eat solid food, mash or puree it in a blender. Consider bite-size finger foods such as slices of cheese, tater tots and chicken nuggets. Check with your physician to see if a supplement, such as a multivitamin or high-protein drink is needed.
Give the person cues such as demonstrating eating by lifting the spoon to your mouth. Or get the person started by putting food on a 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 food or liquid slowly and make sure it's swallowed before continuing. Avoid putting your fingers in the person's mouth, in case he or she bites down.
Encourage fluid intake
A person with Alzheimer's may not always realize that he or she is thirsty or may forget to drink water or other fluids. If they have trouble swallowing water, substitute fruit juice, gelatin, sherbet or soup. Check the temperature of warm or hot liquids before the person consumes them.
Thicken liquids to lower the risk of choking due to swallowing problems
Adding a little cornstarch or unflavored gelatin to water, juice, milk, broth and soup can thicken liquids. Commercial food thickeners can be purchased at pharmacy or health care supply stores. Consider substituting plain yogurt, ice cream or pudding for milk.
Changes in weight can be the result of inadequate nutrition, another illness or medication side effects. Consult a physician if a person's weight continues to go down.
Try to determine the reason that the person refuses to eat
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.
Know what to do if the person chokes
Be prepared for an emergency and learn the Heimlich maneuver. To get instructions on how to do the Heimlich maneuver, you can find explanations by entering the keywords, "Heimlich maneuver" in your search engine.
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 a pillow to support arms and legs. Consult a health care professional about proper technique to lift and turn the person.
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, and skin breakdowns.
Skilled nursing facility care
Medicare will also pay for up to 100 days in a skilled nursing facility. The first 20 days are fully covered, but for days 21 through 100, a $105 (for year 2003) daily co-payment is required. This co-payment may be covered by Medigap insurance. The patient must have been hospitalized for at least 3 days prior to entering the skilled nursing facility, and generally, must be admitted to the facility within 30 days after leaving the hospital.
Protect 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 area.
Prevent limb contractures (Freezing of the joints)
This 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.
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 and monitor the frequency of bowel movements
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. The person need not have a bowel movement every day. However, if he or she goes three days without a bowel movement, the person may be constipated. Speak to your physician about adding natural laxatives to the person's diet, such as prunes, or fiber-rich foods, like bran or whole grain breads.
Eliminate caffeinated drinks
Beverages with caffeine, such as coffee, cola, and tea, act as diuretics and can stimulate urination.
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 for extra protection.
Decreasing the Risk of Infections and Pneumonia
Immobility in the late 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 that 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 the 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
Since influenza can lead to pneumonia, the person and his or her caregivers should obtain a yearly flu vaccine. Also ask your doctor about the 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 have difficulty communicating their pain. Here are some ways to recognize pain:
Look for physical signs that can indicate illness
Signs such as pale or flushed skin tone; dry, pale gums; mouth sores; vomiting; feverish skin; or swelling of any part of the body.
Pay attention to nonverbal signs and body language
Signs such as wincing, moving about in discomfort, etc.
Be alert for changes in behavior
Anxiety, agitation, shouting and sleep disturbances can all indicate pain.
Consult your physician to determine the cause of the person's pain and what can be done about it.
See the section below on Palliative/Comfort Care.
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. Focus on what the person is still able to do or what the person still enjoys.
Comfort by touch
Hold the patient's hand; give a gentle massage to the hands, legs or 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 or 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 sooth
Speak gently and with affection. Your tone can help the person feel safe and relaxed.
Play music and videos
Choose music the patient once enjoyed when he or she was a young adult or something from his or her ethnic or spiritual background. Videos can also be relaxing. Try selecting 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, blessing, etc.
Reminisce and share
Fill a box with photographs and items that represent the person's interests, favorite activities, past work or military history. Have the person take out an item and share with him or her the significance of a 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 the Person with Alzheimer's Disease to a New Home
By the time the person with AD reaches the late stage of Alzheimer's disease, it is likely that you have been caring for him or her for many years. During this time problems may occur that lead to move them 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 stage 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 the person with Alzheimer's.
When individuals with Alzheimer's disease approach the end of life, caregivers and their families must make difficult decisions regarding their care. Ultimately, any end-of-life decisions made on the individuals' behalf should respect their values and wishes and maintain their comfort and dignity.
Honoring the Person's Wishes
Individuals with Alzheimer's disease have the legal right to limit, withdraw, or refuse medical or life-sustaining treatments. These decisions are usually expressed through advance directives – legal documents that indicate the type of medical care a person wants to receive once he or she can no longer make or express these decisions due to incapacity.
Two common forms of advance directives are a Health Care Proxy and a durable power of attorney. For more information on advance directives, please click here.
Ideally, advance directive documents should have been completed while the person with Alzheimer's still had the mental capacity to make decisions. If there are no advance directives in place, a family must be prepared to make decisions consistent with what they believe the person's wishes would have been in combination with his or her best interests. Typically, residential care facilities and hospitals have ethics committees that can facilitate the decision-making process if there is a conflict between family members or with health care providers. It is also important to use the advance directive forms that are recognized by New York State.
To help ensure care decisions are guided by your loved one's advance directives, inform others about them and be active in all medical decision making.
Distribute advance directive documents
Give copies of the documents to family members, physicians and other heath care providers. Have advance directives placed in the medical records of the person with AD. If he or she is transferred to a different care setting, such as a residential care facility or hospital; make sure the staff has copies as well.
Talk with the physician and other health care providers
Make sure they understand the person's directives and are prepared and willing to carry them out.
Talk with your family
They must also understand, respect and abide by the person's wishes.
Educate yourself about the range of medical care available when making decisions to use, withdraw, limit or refuse treatments for the person with Alzheimer's.
Understanding when Less Aggressive Treatment is Appropriate
Families of Alzheimer's patients face enormous pressure to use all available medical technology to keep the person with AD alive, in many cases, causing them to make decisions that may not be the expressed wishes of or in the best interests of the patient. Many people with dementia may express wishes ahead of time not to be kept alive artificially.
The Alzheimer's Association takes the following position on the treatment of patients with advanced dementia who are at the end of the spectrum of decreasing mental capacity:
"When the severely demented patient has previously made his or her wishes known and when there is co-existing illness, it is ethically permissible for the physician to withhold treatment that would serve mainly to prolong the dying process. When there is no prior expression or living will, responsible family members or the patient's guardian should indicate their wishes regarding treatment. Severely and irreversibly demented patients need only care given to make them comfortable. If such a patient rejects food and water by mouth, it is ethically permissible to withhold nutrition and hydration artificially administered by vein or gastric tube."
On July 5, 2000, Dr. R. Sean Morrison and Dr. Albert L. Siu of the Mount Sinai School of Medicine in New York published a report in the Journal of the American Medical Association stating that patients with advanced dementia were much more likely to die within six months of pneumonia or a hip facture than those patients who were mentally intact who got equal care. Dr. Morrison said, "These are people with a terminal diagnosis, but physicians and families focus on the acute illness and ignore that this is occurring in the setting of a terminal illness with an average survival of six months."
Persons with late-stage Alzheimer's disease frequently develop eating and swallowing difficulties and lose weight. When a person refuses or is no longer able to eat or drink, decisions may need to be made about artificial nutrition and hydration.
Feeding tubes are sometimes used in response to a person's refusal or inability to eat. However, there is no evidence that tube feeding extends life, prevents infection, or has any other benefits.
On October 13, 1999, the Journal of the American Medical Association published, "Tube Feeding in Patients with Advanced Dementia." In this article, researchers at the John Hopkins Geriatrics Center in Baltimore reported on their review of existing data and studies about tube feeding in patients with advanced dementia.
The researchers found no data to suggest that tube feeding can prevent aspiration pneumonia, prolong survival, reduce the risk of sores or infections, improve function or keep the patient comfortable. Further, they found that the risks of tube feeding are substantial. The researchers also said that they believe that a comprehensive, motivated, conscientious program of hand feeding is the proper treatment for severely demented patients with eating difficulties. They concluded that the best evidence suggests that tube feeding will not help such patients who are declining and that the practice of tube feeding should be discouraged on clinical grounds.
Although the research described in the JAMA article is not a definitive study, it is a review of the best available evidence, and gives people important information to help them make difficult decisions on medical care for persons with advanced dementia.
Public policymakers need to rethink Medicare policies that currently provide financial disincentives to do what is best for patients with advanced dementia. While Medicare does not pay for long-term care or extended home health care, it will pay for care if the patient is put on a feeding tube.
How Fluid Deprivation affects the Terminally Ill
The absence of hydration is a normal part of the dying process and allows a more comfortable death over a period of days. The use of IV hydration can prolong dying for weeks and physically burdens the person. While intravenous (IV) hydration may temporarily provide fluid, it cannot maintain nutritional requirements. Increased hydration may also decrease the person's comfort because hydration promotes excessive respiratory secretions, resulting in breathing difficulties. In one study 8 out of 10 hospice nurses agreed that dehydration is not painful, and more than half of them said that it's beneficial. Printz reported that terminally ill patients in end-stage dehydration experienced less discomfort than did patients receiving medical hydration. One explanation for this is that dehydration causes the production of ketones, which have an anesthetic effect.
Palliative care is a treatment meant to control pain and other forms of discomfort. Rather than focusing on a cure or prolonging life, palliative care emphasizes quality of life and dignity by keeping the person comfortable and pain-free until life ends naturally. Dr. Morrison and Dr. Siu of Mount Sinai concluded in their study published on July 5, 2000 that in many cases the best treatment for people in the late stage of Alzheimer's may be to maximize pain control and minimize repeated blood tests and the insertion of intravenous lines and urinary catheters which are painful and frightening to people with dementia. He said, "Some patients with severe dementia may even be better off without surgery to repair a broken hip." Hospice programs provide palliative care to individuals in the final stages of terminal illness and support services to the family. For more information about Palliative Care in New York State, click here to go to the website of the Hospice and Palliative Care Association of New York State.
Hospice care focuses on the comfort and dignify of the person with the disease. It can be provided in the home, hospitals and residential care facilities. A hospice team includes nurses, physicians, social workers, trained volunteers, dieticians and clergy. They work together to address the physical, emotional, and spiritual care needs of the person and his or her family.
To qualify for Medicare to cover hospice care, a person with Alzheimer's must be assessed by a physician as having six months or less to live. Click here to get information on hospice services that are available in your area. For more information about Hospice Care in New York State, click here to go to the website of the Hospice and Palliative Care Association of New York State.
Making Informed Decisions
Consider the following when making end-of-life decisions about the care of the person with Alzheimer's.
Focus on the person's wishes
Compare any recommended medical treatments or actions against the person's wishes for care or what you believe the person would have wanted. For example, did the person want all available treatment measures or only specific ones? Did the person want medication to ease pain but not fight infection?
Reflect on the person's values and beliefs
Cultural, religious, spiritual, and family values and beliefs often influence people's decisions to use medical treatments or their definitions of quality of life and death. Let the values and beliefs of the person with Alzheimer's guide your decision-making. Distinguish your values and beliefs from those of the person with Alzheimer's – they may not be the same.
Weigh the burdens and benefits of treatments
Talk with the medical care team about the burdens and benefits of using or refusing care treatments. Find out if the treatment will improve the person's condition or comfort and for how long, and if it will pose excessive physical or psychological burdens. Compare any recommended treatments with the person's wishes for end-of-life care.
Make each decision separately
Advances in medicine and technology have made it possible to extend, and in some cases, improve a person's life. However, certain treatments may also lengthen the dying process and cause more complications and pain. You may agree to use a treatment for a limited time to see if it benefits the person.
Ask the physician questions about medical care treatments:
Find out what treatments can be provided in familiar surroundings and what type of care may require a transfer to another setting, such as a hospital. In general, the temporary transfer to a hospital for tube placement or other interventions is disorienting and may be harmful to the person with dementia. Discuss with the care team if moving a person to a different setting is in his or her best interest.
Do not equate the refusal or withdrawal of treatment as assisted suicide
Treatment limitations allow for a natural course of the disease and promote the person's comfort and dignity. If treatment is refused or withdrawn, the person will continue to receive good care.
Family members need ongoing discussion when making decisions on behalf of the person with Alzheimer's. Some members may disagree about a recommended treatment and get angry or defensive. Or, they may refuse to engage in discussion because they feel the family is "planning for death". Here are some suggestions
Involve a third party
The physician, nurse, social worker, hospital ethics committee member or spiritual leader can be called on to facilitate family meetings and help members work through difficult issues.
Listen to each family member with respect
Family members may have different opinions of the person's end-of-life preferences and quality of life. Or, they may be at different levels of acceptance about the approaching death of the person with Alzheimer's. Talking about these perspectives may surface intense emotions, but this is not the time for blaming or attacking others. Each person deserves to be heard and treated with respect.
Come to agreement
Talk to the physician about the person's condition, prognosis, and care options, including the burdens and benefits of specific treatments. With the help of a third party, a family can find common ground and agree on decisions that are in the best interest of the person.
Brain autopsy is still the only way to confirm that an individual had Alzheimer's disease or another type of dementia. Brain autopsy for Alzheimer's may require special arrangements, and the decision to have one should be made before the person's death. Contact us to find out more.
Caregivers and their families may want to seek emotional support, particularly during this last, difficult stage of the disease. The New York City Chapter of the Alzheimer's Association has a Helpline that is available to you 24 hours a day. You can call 800.272.3900 or click here to send a confidential e-mail.
Sources: Materials prepared by the National, Alzheimer's Disease and Related Disorders Association, Inc.; "Less Aggressive Treatment Urged in Severe Alzheimer's by Denise Grady, published in the New York Times on July 5, 2000; "How fluid deprivation affects the terminally ill", by Paul C. Rousseau, and "Benefits of Dehydration in Terminally Ill Patients:, by Melissa A. Taylor, published in Geriatric Nursing, Volume 16 Number 6