Despite our best research efforts, Alzheimer's disease remains incurable. Researchers are using sophisticated technologies to pinpoint how AD progressively steals memories and destroys personality; and yet, AD remains irreversible. Although one does not die of Alzheimer's disease, during the course of the disease, the body's defense mechanisms ultimately weaken, increasing susceptibility to catastrophic infection and other causes of death related to frailty. At some point after the mind has been lost to this devastating disease, the body will be lost as well.
Families and caregivers of people with AD face many challenges as they cope with the steady loss of their loved one's mental and physical skills. As the disease moves to its end stages, certain steps can provide measures of comfort-both to the caregiver and to the person with AD. Healthcare professionals can help caregivers fill the last days with love and tenderness even through the wrenching turmoil of letting go.
Many caregivers are unaware that resources and healthcare professionals are available to provide comfort and help each AD patient end life with dignity. They face emotional conflict and unnecessary guilt.
"A lot of what we think about death and dying is based on the cancer model," says Dr. Stephen Post, professor in the department of bio-ethics at Case Western University School of Medicine. "Alzheimer's is a complicated and difficult disease." Late-stage AD is characterized by the inability to communicate by speech or recognize family members, the inability to move about without assistance, incontinence, loss of appetite, and loss of the ability to swallow, with death usually resulting from aspiration pneumonia, infection, or coronary arrest. On the average, the advanced stage of AD lasts 1.5 to 2 years, according to Dr. Post, though 20-30% of patients will "linger" 4, 5, 6, or even as long as 10 years, he says.
Doctors, nurses, social workers, and other healthcare professionals can help caregivers understand the dying process and the role of palliative care for the AD patient. This is the purpose of palliative care-to provide comfort and symptom relief, without the use of aggressive treatments, such as tube feeding, mechanical respiration, dialysis, and cardiopulmonary resuscitation, which often only prolong the suffering of the patient. Community programs, such as hospice, can be of great service to family members and healthcare professionals by assisting with medications, patient physical care, and counseling. The objective in managing the advanced stages of Alzheimer's disease should be to maximize comfort while preserving patient dignity and respect.
The Palliative Course
Experts agree that palliative care is the most appropriate course of action for advanced Alzheimer's disease. Use of aggressive medical interventions in the advanced stage, such as CPR, feeding tubes, intravenous antibiotics, even dialysis, is considered by experts to be of little benefit, and may impose a further burden of suffering on the patient. "The Alzheimer's Association firmly recommends palliative care and hospice approach in the advanced stages of the disease," says Dr. Post. "Family members should never be made to feel guilty in making a decision to allow a person with AD to die naturally."
"Healthcare professionals are duty-bound to do more than simply present technological options like items on a laundry list, without clarifying the burdens that these technologies create for people with advanced dementia," Dr. Post says. Healthcare teams in these circumstances must be nonjudgmental and listen attentively to family wishes, while providing accurate facts on the adverse implications of prolonging end-of-life treatments.
Artificial Feeding and Hydration
Family members should be warned about the potential medical problems associated with artificial feeding and hydration. These include, in the case of nasograstric tubes, pain and discomfort related to the forceful introduction of physical devices in the esophagus, needed sedation, and infections often resulting from the procedure. "Many family members are not aware that no longer eating and drinking is part of the dying process, and it is normal," says Dr. Post.
"Our modern culture tends to treat dying as unnatural. Our technology allows us to forestall death, yet cannot prevent it. Family members need to be informed, with great compassion, sensitivity, and patience, about the dying process and how natural and inevitable it truly is. The body is shutting down. The natural process of dying means that the body no longer wants or needs food or fluids. This is often viewed as unnatural by caregivers, and even some healthcare professionals. However, we need to explore our own feelings and attitudes toward death and dying before we can help families through this transitional process, this time of loss and change," comments Darby Morhardt, MSW, Social Worker, Northwestern University Alzheimer's Disease Center.
Cessation of food intake results in the release of endorphins, which reduce pain. Feeding tubes and hydration block the release of endorphins and can result in weeks of "unnecessary suffering" Dr. Post said, with patients "uremic and bloated and unable to clear mucus from their lungs." Percutaneous endoscopic gastronomy (PEG) feeding can result in back-up to the esophagus, increasing the risk of aspiration pneumonia, while lack of ambulation-PEG feeding often requires physical restraint to prevent patients from pulling out their feeding tubes-increases the risk for bed ulcers and skin infections.
Artificial feeding also deprives a patient of taste, says Dr. Ladislav Volicer, clinical director of the Geriatric Research, Education and Clinical Center (GRECC) at the E.N.R.M. Veterans Hospital in Bedford, Massachusetts. "Alzheimer's patients love sweets," Dr. Volicer says, "even in the later stages-things like milk shakes and ice cream." Artificial feeding also deprives patients and caregivers of personal contact, which is a meaningful activity.
"We haven't had any tube feeding in the last 10 years," says Dr. Volicer, who often converts patients back to assisted feeding on arrival. "They can always eat to some degree," he says, "except during the actual dying process." Patients in the dying phase do not experience hunger and thirst, he adds.
Problems with choking can be addressed by substituting thick liquids, such as yogurt instead of milk, and by using commercial thickeners. "What we are trying to do is switch the emphasis of care from high tech to high touch," he says. "That also includes very aggressive management of pain. We use a lot of narcotics in the management of late-stage dementia."
Antibiotics may be useful for urinary tract infections, but they are not reliable against chest infections, because of increasing resistance, says Dr. Post. Some physicians prefer to recommend acetaminophen (like Tylenol) for fever.
Hospital transfers should also be discouraged. "There is published evidence," says Dr. Volicer, "that the 3-month mortality rate is lower if patients are treated in a nursing home than if they are transferred to the hospital."
The End Draws Near
It's difficult to predict when an AD patient is going to die. "The average clinicians are not as good at this as they would be for cancer," says Dr. Jason Karlawish, of the University of Pennsylvania's Institute of Aging, "because there is a lack of clear understanding of this stage of AD." Dying for the Alzheimer's patient is marked by little if any verbal output, complete dependency in all aspects of daily living, and the complications of brain failure, which include episodes of aspiration, urinary tract infections, fevers, skin breakdowns, and more than 10% loss of body weight. "This is the typical profile of a patient who I would expect could die within a year," says Dr. Karlawish.
Working with Family Members
In the absence of advance directives, the healthcare team should work with family members to arrive at a consensus of care and abide by final decisions. There are often conflicts over the use of heroic efforts to prolong life. At odds are everything from the philosophies of individual providers and institutional caregivers to issues of patient competence in the absence of legal instruments.
The solution: arrival at a plan by way of a narrative consensus. Healthcare workers can guide this effort by creating an environment of "equal standing," Dr. Karlawish says, in which all family members are encouraged to discuss how they perceive the patient's illness and arrive at a consensus that will provide the patient with the most comfort and the highest quality of remaining life. "You should be hearing yourself talking about half the time in the beginning," Dr. Karlawish says, "but if you've done it right, the caregiver should wind up doing most of the talking." Physicians should not be hesitant to recommend hospice as an option, he says.
Sparing a Lifetime of Guilt
Doctors can educate themselves to make knowledgeable recommendations. "Nothing should be left to surrogate decision-making without clear data and recommendations," Dr. Post says. "Family members need to be spared a lifetime of guilt."
Social workers make good moderators at consensus meetings. Clergy can also play an important role for both family and the patient, says Dr. Post, who views the AD patient as still having an emotional, recreational, and symbolic self. "Pastoral care involves symbols," he says. "Oftentimes, we underestimate the importance of pastoral care for reconnecting these people with some aspect of themselves that is otherwise ignored."
Healthcare professionals also can help families understand that all feelings--anger, sadness, guilt, relief, conflict, fear-are normal as they witness the patient going through the dying process.
A Healing Death
If there is a kind point in the progression of AD, Dr. Post suggests, it is the point at which the patient begins to forget what they have forgotten, where they no longer have insight into their behavior.
But for family members with memories intact, there is no such kind point. There is only a series of losses at each stage of the disease, as their loved one slips away. 'So many of the healing aspects of death and dying are lost with Alzheimer's disease," says Dr. Post. Much of the understanding family members have of the dying process is what the healthcare team brings to them. In the absence of advanced directives, the healthcare team must provide the means by which family members can arrive at a consensus that will preserve patient dignity and quality of life, and the best chance for healing for those left behind.
- Alzheimer's Association. Ethical Issues in Alzheimer's Disease.
- Casarett, D.A., Karlawish, J. (1999). Working in the Dark: The State of Palliative Care for Patients with Severe Dementia. Generations, Spring.
- Family Caregiver Alliance. Fact Sheet: End-of-Life Choices-Holding On and Letting Go.
- Hurley, A.C., Volicer, L. (2002). Alzheimer Disease: "It's Okay, Mama, If You Want to Go, It's Okay." Journal of the American Medical Association, 288(18), 2324-2332.
- Karlawish, J. (1999). A Consensus-Based Approach to Providing Palliative Care to Patients Who Lack Decision-Making Capacity. Annals of Internal Medicine, 130(10) 835-840.
- Lynn, J. et. al. (2000). Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians. Oxford University Press.
- Mitchell, S.L. (2003). Financial Incentives for Placing Feeding Tubes in Nursing Home Residents with Advanced Dementia. Journal of the American Geriatric Society, 51(1).
- Post, S.G. (2000). The Moral Challenge of Alzheimer's Disease: Ethical Issues from Diagnosis to Dying. The Johns Hopkins University Press.
- Post, S.G. (2003). Unlimited Love: Altruism, Compassion, and Service. Templeton Foundation Press.
- Post, S.G. (2000). Key Issues in the Ethics of Dementia Care. Dementia, Nov., 18(4) 1011-1022.
- Volicer, L. (1998). Hospice Care for Patients with Advanced Progressive Dementia. Springer Publishing Company, Inc.
- Family Caregiver Alliance, 1-800-445-8106, www.caregiver.org 
- National Hospice Foundation, 1-800-338-8619, www.hospiceinfo.org 
- National Hospice and Palliative Care Organization, 703-837-1500, www.nhpco.org