Handbook for Mortals : Learning about specific illnesses : Concerns about dementia

More than one-fourth of those who live into old age will have some dementia, most often because of Alzheimer's disease or strokes. Dementia poses the most difficult questions for most people, future patients and caregivers alike. Persons with dementia die from an array of different complications, but mostly these are somewhat treatable. Yet, the treatments are frightening, even if only because they may require that the person leave familiar surroundings. And the life saved, at least at the end, seems so limited that it is often not clear exactly what should be included in "good care."

Everyone agrees that good care requires keeping the person clean, providing food and warmth, trying to keep him or her safe, and attending to things that cause pain. However, at some point, persons with dementia often stop eating enough to get by. Should they be fed with tubes? Some feel that such tube feeding is essential, even if it requires placing a tube in the stomach surgically to avoid having to restrain the person's hands. Patients often pull out a tube placed through the nose, but a surgically placed tube can be hidden under a dressing. Others feel it is really an affront to drag out the end of the person's life when he or she can have so little awareness or enjoyment. The courts have ruled, over and over, that using artificial nutrition or hydration is a treatment decision just like chemotherapy or surgery, and that families and doctors can choose to use or to forgo this kind of treatment.

How do people die who choose not to be fed artificially? What evidence we have indicates that they do not die more quickly, and that they do not feel thirsty or hungry. Their dying without tube feeding, though, tends to have less struggling with restraints (which are often used to keep feeding tubes in place) and less trouble with an excess of fluids in the lungs, which causes shortness of breath. Without tube feeding, they probably lose a little more weight and might be at more risk of infections or skin problems, but these effects are also unproven. Mostly, people treated with or without feeding tubes end up sleeping away most of the last few weeks, and nothing very dramatic happens. If you find it quite perplexing to sort out whether a family member should have artificial nutrition, consider these things:

If you are clear about what you want, or feel that you might want to have all options available, be sure that your doctor, home care help, and nursing home (if appropriate) all agree. It can be very difficult to get a patient out of a nursing home or into the care of a new doctor if family and professional caregivers disagree about whether the patient can go without artificial feeding.

The same kinds of questions come up about the use of antibiotics and surgeries, and even about hospitalizations. These treatments somehow are usually a little easier to turn down once the patient is quite demented. Still, family members need to have given the issues some thought and need to have forged a relationship with providers willing to follow the family's choice. You might also find it helpful to read about deciding to forgo treatment.

Dementia poses special problems for finding meaning. Usually the patient is living just in the moment, and issues of meaning and spirituality are beyond his or her capabilities. The family, if they are providing care, are often quite stressed, often worn out. Enduring in the face of these challenges can be victory enough, but support groups, spiritual counseling, and recourse to one's faith often enable a sense of accomplishment in getting through a very difficult time.

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Handbook for Mortals book cover Copyright © 1999, 2006 by Joanne Lynn. This extract from the Handbook for Mortals by Joanne Lynn, M.D. and Joan Harrold, M.D. is used with permission. To learn more about improving care at the end of life visit the main web site for Americans for Better Care of the Dying.
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