Ann Carter Garnett Marston '42, died in July after a long battle with Alzheimer's disease. Two months before her death, her husband, Dr. Robert Q. Marston, delivered the keynote address to the Southern Gerontological Society, speaking about Alzheimer's disease and its effect on patient, family and friends. With Dr. Marston's permission we have made this article available in full below:

SOME THOUGHTS ON ALZHEIMERS DISEASE
THE GOOD AND THE BAD

Robert Q. Marston, M.D.
Keynote Address
Southern Gerontological Society/Novartis Alzheimer's Disease Summit
May 21, 1998

This photograph was taken in 1984 as Ann and I was leaving 10 years as President and First Lady of the University of Florida. She was nearing her 60th birthday and was within two or three years of the early signs of Alzheimer's disease. We had been married almost 40 wonderful years, now over 50 years. Oil July 13th she died peacefully in her sleep under the tender and compassionate care of our regional Hospice Care center.

My task this morning is to blend in some useful way, our personal journey with the broader goals of this conference.

While age related diseases such as Alzheimer's cause great distress for patients and their families, tile very good news is that more and more of us are living longer, happier, healthier, and more productive lives than ever before in the history of the world. The MacArthur Foundation study oil "Successful Ageing" published earlier this year focuses, with optimism, on " What does it mean to age successfully?" "What can each of us do to be successful at this most important life task?" and "What changes in American Society will enable more men and women to age successfully?" This and other more recent publications show increasing numbers of older people who are living into late years with reasonably good health and function.

Focusing on other evidence that ageing is much more often good than bad, a close friend of mine, Margaret Fowler and her co-author Priscilla McCutcheon have produced several anthologies on ageing. One example I like especially is, " SONGS OF EXPERIENCE; an anthology of literature on growing old".

Yet in our ageing population Alzheimer's disease and the other dementias bring us face to face with our inevitable mortality more sharply than other diseases. Approximately 10% of those over 65 years of age and almost 50% of those over 85 have dementia and there are few effective treatments or prevention strategies.

Death viewed as losing the fight with the "Grim Reaper", as some suggest we do in the USA, can be a major problem in the rational consideration of any terminal illness. Fortunately, Ann and I had discussed over the years that death is an inevitable part of living and that a time would come for each of us when the relief of pain and suffering, rather than prolongation of life would be the only goal.

Well, what has this past decade been like? First, we have had the luck of very good timing. Ann was the first to suggest that she might be developing Alzheimer's disease. She was able to be a part of the NIH clinical trials. Although those earlier drugs did not help her, we had done all we could at the time. Living at home worked very well for many years. Of course there were strains on the family and friends. However, there was much joy during those years. Then, after she was lost in the Maine woods and in down town New Brunswick, we talked seriously about her going to a nursing home. She never once seemed to regret the move. After a gradual deterioration, 16 months ago she suffered a broken hip and has not done well at all since then and was essentially comatose for the last 6 months of her life.

Compare this with her own mother's final illness. A painful death from breast cancer in her forties contributed to her husband's temporary alcoholism and her sister giving up her teaching career to help with her care. An additional result was that my future wife, Ann, just a teenager at the time, shortened her college career to assist her mother.

At least this very serious disease is almost always a disease of older people rather than of the young. By any measure Ann has had a full, joyful, and successful life. In preparing a letter for friends when she dies, I wrote: " A beautiful and talented woman, she enriched the lives of all those she touched throughout her life. In a world of "givers" and "takers", she was the ultimate example of a "giver".

We believe that in advanced stages, but cannot know for sure, that the destroyed brain shelters from the pain and suffering of Alzheimer's disease.

Then, as you will hear at this meeting, progress is being made in the diagnoses and treatment of Alzheimer's disease.

Because of the long duration of the illness and the very high cost of care late in the disease, the costs are devastating for all but those on Medicaid or the very rich. Last year, Ann's expenses were $ 45,000 in a rather typical nursing home. This year they will be about $ 50,000. Clearly, my children and grandchildren's inheritance is being transferred to her care, which is of very little benefit to her at this stage.

DIAGNOSIS AND CURRENT UNDERSTANDING OF THE DISEASE.

Until recently there was no known cause of the disease and our knowledge is still very incomplete. It clearly is not a single homogenous disorder, yet clinical molecular genetics has shown that several identified genes are or can be involved the disease. These genetic findings indicate that Alzheimer's disease is a mosaic of disease: There are different causes with similar clinicopathologic features. The development of the disease results from an interplay of genetic and nongenetic features and these various factors interact differently in different people.

Thus, there have been major advances since Ann was diagnosed, and there will be more in the future. Yet, one can still expect much uncertainty as many tests are run and alternative diseases eliminated. While the establishment of the diagnosis is a life changing event for all involved, there is not the pain of cancer, the years of a crippled body at times with clear mind of some strokes, or the special tragedy of serious sickness of the young.

AS THE DISEASE PROGRESSES.

Today, anyone with early Alzheimer's disease is likely to be treated with drugs that were not available for Ann. Cholinesterase inhibitors decrease the breakdown of acetylcholine and increase its level at the synapse and have been helpful in lessening symptoms of the disease. Estrogen is currently being studied as possibly reducing the risk of the disease in postmenopausal women, but not for treatment. Non-steroid anti-inflammatory drugs such as aspirin, and antioxidants such as vitamin E are being studied as possible preventive agents. An extract from the ginkgo tree is being used in Europe and tested here for the ability to stabilize or improve symptoms. Thus, it seems very likely that in time we will have more and better treatments available. Yet, reversal of serious brain damage seems very far in the future. Patients will still be asked by thoughtless friends to give names and dates of birth of all grandchildren, will have to give up driving while they can still have intelligent conversations, and will put knives and forks on the wrong side of the plate. It is a time to focus on the important and minimize the trivial.

There are some interesting things if one keeps a sense of humor. With timw, I took over more and more of the cooking which was matched by more and more praise from Ann. My casseroles were splendid, my desserts out of this world. Describing my newly found skills proudly to a physician friend, I was crushed when he said, "Bob, don't you remember that taste and smell are among the first to go in Alzheimer's?" I still know Ann enjoyed my cooking.

WHEN CONSTANT CARE IS NEEDED.

There are many reasons for different timings for constant care. It is essential when required for the safety of the patient. The needs of the caretakers, the desires of the patient (Ann decided, wisely it turned out, that it was time for here to enter a nursing home), and other factors may contribute to the decision. Then, there is the question of what kind of constant care. We considered round the clock nurses versus a nursing home. Our decision to place her in the nursing home was the right one for us. She blossomed in the greater activities and never considered going back home. Others have other experiences, and there are many books which discuss this subject.

WHEN THE END APPROACHES.

This for me and for most families has been by far the worse period. Over a very few months the deterioration progressed quite rapidly until she was no longer recognizable as her old self. Because I have been interested for some time in the problems of death and dying, and have even talked from time to time on the subject I was fully prepared for death with dignity and a shift to the only criteria for her treatment to be the relief of pain and suffering. Clearly, a combination of things make this very difficult to accomplish. Let me review the evidence that shows that this is a major problem.

The first and one of the best recent studies was a twenty-eight million dollar study supported by the Robert Wood Johnson Foundation. Dr. Lee Cluff, who was President of the Foundation when the study was started is with us today. A group of patients with life expectancy of less than six months were followed to see the degree to which the wishes of patients and their families were carried out. They were not. Then, a specially trained group of nurses was employed to insure that the wishes were known. Even these extraordinary efforts failed to increase compliance with the wishes of terminal patients and their families. In short, there is an increasing awareness that we are doing a very poor job in allowing death with dignity. Let me quote from one of a very many articles of the subject.

Jordan Cohen is President of the Association of American Medical Colleges. In ACADEMIC MEDICINE, August 1997, entitled "Dying Patients Need Better Doctoring", he wrote; 'T think doctors-at least most doctors I know- have an especially difficult time coming to grips with this matter, given our traditional orientation to death as the evil enemy of good medicine." If anything that is an understatement. Within months I have had a frantic call from a desperate cousin whose physician would not give his wife sedation requested by her nurses. I advised him to change physicians, which he did letting his wife have some peace during the remaining two months of her life. Most people I discuss these matters with have similar personal experiences.

Ann's nursing home is sensitive to these matters, including the fact that the head nurse has recently lost her husband and experienced some problems with his terminal care. However, I have had difficulty having her adequately sedated, discontinuing routine needless venepuncture, and being sure all was done to institute her "living will". Finally, I spelled out my desires as follows: "You have her "living will" which I expect to be followed fully. More specifically, she is not to be treated with antibiotics, admitted to a hospital, subjected to diagnostic tests (such as the blood test she just had), given oxygen, intravenous fluids or intubated to administer food or fluids. In her "living will" it is clear she should not be resuscitated or treated in any way to artificially prolong her life." Clear enough? However, we had all forgotten that to implement a "living will" in Florida, two physicians must have certified that the patient is in a "terminal condition".

For the last month of her life Ann has been cared for in a Hospice Care facility. This organization focuses exclusively on the needs of people with a life expectancy of less than six months. Here I found both a commitment to death with dignity and the expertise to relieve pain and suffering which I have not seen elsewhere.

Dr. Cohen calls attention to three recent activities which should contribute to improved care for dying people. The American Board of Internal Medicine's "END of Life Patient Care Project" has produced helpful materials; the Institute of Medicine of the National Academy of Sciences issued "Approaching Death; Improving Care at the End of Life"; and "Last Acts" a 72 organization coalition (Rosalyn Carter, Chair) funded by the Robert Wood Johnson Foundation constitutes a continuing effort in these areas.

Now if we could have the slide of Ann once more. I hope that as you have listened to what I have said about her I have not made you sad. She lived a full and rich life and it was time for her to go, and I have enjoyed my favorite person for more than 50 years.

This article is an extension to The Thistle, St. Margaret's alumnae magazine.