Alzheimer's Disease affects three to four million Americans in their later years. It is estimated that 25% of people over 85 are suffering from Alzheimer's or other dementia.

If you are stricken with this disease, does your family know how you would wish to be cared for? The following article was written by Dr. Sterling Edwards, based on his personal experience with the disease within his own family.


Final Decisions
By Dr. Sterling Edwards

Photo of Sterling EdwardDr. Sterling Edwards is a professor and chairman emeritus of the Department of Surgery at the University of New Mexico School of Medicine. In addition to his contributions to cardiology and surgery, he is the author of numerous medical books and articles, including "Making the Patient Your Partner," co-authored with Thomas G. Gorden. The book is designed to help improve health professionals' communication with their patients.


Some years ago I visited my parents, who lived in another town. Dad was then in his mid-80s and had become progressively more forgetful.  He'd gotten lost when he took a walk near home, and he was no longer allowed to drive his car.  As I walked into my parents' apartment Dad looked at me and asked,  "Who are you?"  Suddenly I found tears rolling down my face, and I realized later he died for me at that moment.

Actually he lived on for several more years, the last four or five in a nursing home, quite combative, requiring sedation.  He was incontinent and had to be kept in diapers. His care required all kinds of indignities I felt he would have hated.  Once or twice he developed pneumonia and was treated with antibiotics.  I asked Mother if she thought Dad would want to be kept alive like that, and she said she didn't know but felt she could not make a decision to let him die.

A few years after Dad died at age 89, Mother also developed Alzheimer's disease, and reached the stage where she couldn't care for herself. My sisters, who lived in the same city, decided to care for Mother in her apartment with round-the-clock  baby sitters.
Mother also became incontinent and could not speak or recognize anyone.  She could walk around her apartment and sit in front of a television set, which she did not watch.  When meals were offered her, she usually made no effort to eat and the aides spoon fed her.  She finally died several years ago at the age of 96 after 4 or 5 years of home care.  My two sisters did a wonderful job of supervising her care and keeping her comfortable.

Planning Ahead

With such a family history, I find I'm much more afraid of dementia from Alzheimer's disease or a stroke than I am of cancer or heart disease.

I occasionally visit friends in nursing homes, and seeing people dozing in wheelchairs or being fed by nurses saddens me as well as creates anxiety.  Now in my 75th year, my memory for names and for recent events is not as good as it used to be. I open the refrigerator door and can't remember for a moment what I was after.

In preparing my living will and a document giving a member of my family the durable power of attorney for health-care decision, I've had to think about my own wishes, should I lose cognitive functions as my parents did.  The major decision I've made is that I don't want to be kept alive when I have no mind to recognize or relate to others.

I do want pain relief or comfort care.  But the main thing I don't want is the little, non heroic measures that prolonged the mindless existence of my parents.  I don't want to be tube-fed if I can't eat or spoon-fed if I choose not to eat.  If I develop dementia, followed by cancer or heart disease or any other life-threatening illness, I want no treatment at all except pain control.

I recently talked with many friends in their 60s and 70s and found that very few had thought much at all about their wishes if they should reach an advanced stage of dementia or have a stroke that leaves them unable to function as a rational being.  By not considering this possibility, we are unconsciously deciding we want our lives extended as long as possible, regardless of our mental capacity, since we leave no advance directive to guide physicians and other care givers.

A Poll of 142 Healthy Seniors   
To study the problem further, I decided to take a poll of healthy senior citizens and a few younger individuals to determine their thoughts and feelings about how they would want to be treated should they develop severe dementia from Alzheimer's disease, stroke, or head trauma.

One hundred and twenty-one individuals were willing to fill out the questionnaire after aerobic classes at three different senior centers in Albuquerque.  A little to my surprise, they attacked the questionnaire vigorously, and many wrote lengthy comment at the end.  An additional 21 individuals, friends and acquaintances of mine, completed the questionnaire without discussing it first.  Many different careers were represented among the respondents, and the average age was 67.

From my survey, I was surprised at the high percentage of individuals who wished to be allowed to die of natural causes if dementia became severe.  I had guessed the strong will to live and the fear of death would have predominated in spite of crippling dementia. If these wishes are common to a majority of the population, it becomes even more urgent that every person prepare advance directives expressing their wishes while they are still mentally competent.


PE03327A.gif (2805 bytes) Click to view the results of the Opinion Poll


What happens when your body is healthy, but you no longer recognize your family?

Most people have focused on whether or not to have heroic measures  such as CPR or artificial ventilation if their condition is irreversible.  We have failed for the most part to decide what we want in the situation of irreversible loss of brain function.  The one area where a health-care proxy may meet resistance from professional care givers is the area of artificial hydration or nutrition if it cannot be demonstrated that you have specific wishes.  To ensure decisions can continue to be made and carried out in this area, a specific statement should be included so feeding tubes and intravenous fluids can be either refused or withdrawn if that if what the patient would have wanted

Having seen how my parents were kept alive for several uncomfortable years by spoon-feeding, I have added the following request:  If I suffer severe loss of brain function from Alzheimer's or stroke or any other cause, I want no artificial tube-feeding or intravenous fluids. Each day I want food placed in front of me, but if I do not or cannot feed myself, I wish not to be spoon-fed by someone else, nor helped to drink liquids. I leave it up to my health-care proxy when this should  start, but at least no later than the time when I no longer know their name and a good internist and neurologist have indicated they believe my condition is irreversible.
Quite frankly, I think I would consider suicide if I had the brain power left to carry it out. But by the time I am ready to terminate my life, I won't know how to do it. I am reluctant to ask one of my physicians to assist me in suicide as that would place a stressful burden on him or her and would currently be asking them to break the law.  I don't mind asking that supplying nutrition and hydration by tube-feeding or spoon-feeding be withheld, since this would allow death to occur by natural causes.  Contrary to most of our beliefs, death from hunger is not painful or even very uncomfortable.

Physicians who are not directed otherwise will be likely to treat each patient vigorously, trying to keep that individual alive as long as possible.  I saw this happen with my own two parents.  This is the cause of my concern.

I have a Living Will. Why do I need anything more?

Many states will not accept living wills for dementia from stroke, head injury, chronic vegetative state or Alzheimer's disease because they are not terminal illnesses.  Patients usually do not die of dementia but of some more destructive process such as cancer or heart disease. Also, pain is usually not a symptom of dementia unless there is another illness causing the pain.
The last consideration, but one that can be sticky, is the problem of relatives anxious for the early inheritance of the patient's estate. Picking a trustworthy and loving health proxy will usually prevent this from occurring. Since I wish for my life to end by natural causes if I develop severe dementia, I think it is wise for me to have both a written living will to document my desire not to be fed by tube, vein, or spoon feeding and a health proxy to make other decisions, such as when to begin the processes stated in the living will.
A Peaceful End

Alzheimer's disease usually comes on slowly, and care givers often can cope with these early symptoms, but they will want to know the patient's wishes when the difficulties become more severe.  When I can no longer remember where I am, or the names of my family members or friends, I wish these procedures to be started.  My family, in an open discussion with me, helped me write my living will and pick the family member to be my proxy.  I feel more relaxed and at peace having made my wishes known.