What if I get dementia? A doctor's comments. Read here first.

What if I get dementia?

As a physician who has worked at nursing homes for decades I have watched many patients go through the natural life cycle of Alzheimer’s type dementia. I have seen healthy patients scared about the future. I have seen families struggle with decisions. I have seen caregivers, including doctors and nurses, conflicted about withholding treatment or applying treatment. I have wondered, what would I do if it were me?

As I have aged, I have become aware that my memory is not as good as it once was. I forget names at a rapid rate. I sometimes can’t find words. My typing has become more prone to error. My hand shakes a bit. What if I get Alzheimer's? What if I can’t take care of myself? What if I can’t recognize my wife, my children or my friends and I can’t remember who I am? How would I want to be treated?

Before answering the question, I have to share some of my assumptions with you about life, and medical care, about pain and suffering, and about dying.

I know that I will die, though I feel much the same as Woody Allen, who said, “I’m not afraid of dying, I just don’t want to be there when it happens.” That is a joke, of course. As someone who has practiced meditation, I do want to be there, if possible, when dying, except in cases of trauma where sedation is necessary. Interestingly, the person with Alzheimer's is not there at the end, everyone else is there for you.

There is no effective treatment for Alzheimer's, or most forms of dementia, once the damage has been done and brain function has been lost. You can’t get it back.

Alzheimer’s is a specific form of dementia, and the two terms are often used interchangeably, but are not the same. You can get dementia from Alzheimer’s, from drinking too much alcohol, from a series of strokes, from brain injury due to trauma, from infections like encephalitis, from poisons like nerve gas, and so on. Anything that damages the brain can cause dementia.

Alzheimer's is a specific progressive disease affecting more than the brain. In addition to the dreaded loss of memory, inability to recognize people and confusion about language, and orientation to themselves, their surroundings and other people, people with advanced Alzheimer’s type dementia can’t dress or feed themselves, can’t clean themselves after they go to the bathroom, can’t walk, and often can’t swallow. It is not just that they “forget” how to feed themselves or clean up after a bowel movement, there is a real physical loss of function, like the ability to swallow, that has nothing to do with memory. The progress of the disease covers many different body systems and is inexorable.

Many people maintain their social skills long after the memory has started to slip. A person with no memory for people or recent events can still be pleasant, carry on a coherent conversation and seem to be functioning normally as long as pointed and specific questions are not asked. We will often declare that such people are not competent to make decisions about their own medical care, even though they can tell you how they feel on any given day, or what they want. The ability to understand abstract ideas like “what to do if x,y, or z happens” is lost.

Behavior associated with poor memory, like getting lost, forgetting people and events, seems to come and go, especially in the first few years. It is not unusual for family members to wonder if they are “faking” memory loss because some days are so much better than others. They are not faking.

Personality can change drastically. The nice grandmother can suddenly start swearing like a sailor. The grumpy grandpa can become pleasant and placid. Paranoia, possessiveness, fear of anything new and aggressive behavior can also develop in people who were previously nice and calm.

Currently available medications purport to slow the progression of the disease, and they do, but not much. The drugs are expensive, may have side effects, and it is difficult to tell if they are working in any given patient. Once someone has advanced disease, requiring full support for all activities of daily living, lacking awareness of their surroundings and visitors, there is no point in continuing the drugs, but discontinuing the drugs may cause an acceleration of the downwards course of the disease.

People with Alzheimer’s don’t die from Alzheimer’s, exactly. Like other people with advanced dementia they often die from malnutrition that leads to infections which lead to death. Pneumonia due to choking on food or secretions is a common pathway to death. Urinary tract infections that lead to kidney infections and blood infections are common causes of death. Skin breakdown leading to widespread or deep skin infection is a common and often particularly painful way to go. A broken hip from a fall can lead to a deep vein thrombosis (blood clot) and pulmonary embolism (blood clot to the lung) and death. Any other cause of death, from cancer to heart attack can intervene as well and might be difficult to diagnose and impossible to predict.

(Remember I am giving you my opinion here from personal observation and study.) Death by starvation, especially when the person starving has no hunger and no awareness of their own difficulties, is a painless way to go. A feeding tube in a person who can’t swallow because of dementia, does not prolong life. A patient can still aspirate and die of pneumonia after a feeding tube is in place. Feeding tubes are not usually recommended for patients with Alzheimer’s who cannot swallow safely.

I am amazed by the love and care demonstrated by family members, nurses and other staff in nursing homes and day care centers towards patients with advanced dementia. At the Jewish Home of CNY we have repeatedly taken patients who were thought to be dying, some even on hospice care, and helped them to survive for many years. Our nurses and aids keep people clean and dressed and well fed years after the person has stopped bathing, dressing or feeding themselves.

Nursing home care is very expensive. The majority of the budget for the State of New York is for Medicaid and the majority of Medicaid’s budget is spent on nursing home care. Doctors get less than 4% of the Medicaid budget.

The truth is that no matter how dedicated a family is there is often a point at which caring for an individual with advanced dementia exceeds the ability of the family to cope. In the best cases families proactively look for solutions such as long-term care institutions. In the worst cases, the person with dementia has to break a hip or get skin breakdown, sepsis or pneumonia and end up in the hospital before the family realizes that they can no longer meet the patient’s needs.

There is tremendous guilt in family members who feel that they are expected to care for their mother, father, aunt, uncle, brother or sister when they get sick. Words like “I never want to be in a nursing home” or “I’ll never let you go to a nursing home” have often been spoken. Such promises create unrealistic expectations and more guilt. I never want to be in a nursing home. I never want to be in a car accident. I never want to break a bone. My wishes may not always be fulfilled when I am trying to determine a future that I can’t understand or control. I accept that and don’t blame my family for what happens.

People have often not given clear advance directives about how they want to be treated should they become incapacitated, leaving their families to guess what they would have wanted. Most family members have to think what they themselves would want, not what their loved one would have wanted, because there is just not enough information.

In New York State we are fortunate to have the ability to state our advanced directives to our friends and family and to our eventual caregivers, doctors, nurses and institutions about how we want to be treated if we become ill. These advance directives, made by a person of sound mind and confirmed by a physician and witnesses should be legally binding. The sudden appearance of a relative from another state (usually Texas or California) who has a different idea about how to do things should not change the care plan if advanced directives are in place.

Doctors and nursing home administrators are very risk averse and don’t want to take chances. If advanced directives are not clear, even if families are not threatening to sue, the unfortunate patient will suffer the results. In the absence of advanced directives, medical care can be like a freight train: slow to start but very difficult to stop. Doctors and administrators can’t decide not to treat someone. Only a patients clear advance directives or a firm and strong courageous family member can do it, and only if the entire family agrees.

The worst thing that can happen to a patient with advanced dementia, in my opinion, is the intervention of aggressive medical care, with intensive care being the worst of the worst. Needle sticks, uncomfortable and dangerous tests, strange environments, sleep deprivation, dangerous medications and the ever present risk of medical errors makes hospitalization and intensive care very dangerous and uncomfortable for patient and family alike.

The comments above reflect my beliefs, based on years of observation. These are the assumptions I am using to determine how I want to be treated if I should ever develop dementia. You may have your own set of assumptions, but unless you have extensive years of medical training and experience in geriatrics, I would suggest that my assumptions are good ones to start with. At any rate, these assumptions plus an understanding of the world derived from the study of Buddhism, especially Zen, have given me comfort with change, uncertainty and the inevitable “unsatisfactoriness” of life. All of this informs my feelings about how I would want to be treated if I developed advanced dementia, and it is very different from how most of my patients with dementia are treated.

Let’s start with the extreme example and work backwards. Not all of the following factors need to be present, but if I am in a nursing home suffering the end stage of dementia; if I don’t recognize my wife or my kids; if I don’t know where I am; if I am having trouble eating and need to be fed; if I am having trouble swallowing; if I am having trouble walking and need to be in a wheelchair; if I am often confused and sometimes uncomfortable emotionally or physically; if I sometimes get restless or combative with my caregivers because I don’t understand what is going on; if I sundown; if I am at risk for falling -  if many or most of these qualities are present then I think the instructions for my caregivers should be clear: keep me comfortable, do not do any routine medical tests, give me only those medications necessary to keep me comfortable physically, and allow a natural death. If you think I have a urinary tract infection, do not check a urine sample. Don’t do any blood tests. Do not prescribe antibiotics. Under no circumstances send me to a hospital. If I have pneumonia, give me oxygen, morphine if necessary but no antibiotics. Pretend that I am at home and it is 1850, but don’t let the doctors bleed me or cup me! Do not over sedate me. There is a tendency to think people are suffering at the end of life even when they are simply dying. I do not want to be sedated unless it is necessary to protect myself or others from harm. In today’s terms, using a MOLST form, I would be DNR, DNI, no feeding tube, no IV, no antibiotics, no hospitalization, comfort measures only.

The difficult decisions usually start before the patient reaches the scenario above. There are usually several hospitalizations for complicated bladder or kidney infections, pneumonia from choking on secretions or food, possibly a broken bone, even a broken hip. The patient with dementia can be treated through such emergencies, can tolerate hip surgery, and then go to a nursing home for “rehab” or long term care if the family can’t handle it any more.

Working backward from the extreme scenario, I see that there is not much difference. When I get to the point where my physician feels that I cannot make my own decisions any more because of dementia, my advance directives should be those listed above. DNR, DNI, no feeding tube, no IV medications or fluids, no antibiotics, no hospitalization, comfort measures only. Minimize sedation unless I am a danger to myself or others. Stop doing tests. Stop drawing blood. Stop all unnecessary medications and treat only to keep me comfortable. Do not treat to prolong my life.

Pretend I am that old Indian chief in Little Big Man, who said, “It is a good day to die.”  He just went to the top of the mountain to lie down and wait for it. We don’t need a doctor to die. Since we have no control over when and where it will happen, we have to be patient, enjoy the time we have, and live on. I would prefer to have my family by my side at home, or in a nursing home, rather than a hospital ICU. I realize that I may not have that choice, or that ending. As Yoda once said, “Difficult to see. Always in motion is the future.” In that case I will take what comes, but if dementia is in my future and my family is struggling with decisions about my care, above are my directives. I know they will be followed.

Jef Sneider, MD

August 2013