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DEATH AND DEMENTIA, Faye Girsh, Ed.D.

No one wants to get dementia. But if we live long enough the chances get better that we become one of its victims.  By 85 about 50% of us will have some signs. Memory loss, apathy, behavior changes, feeling foggy, senior moments, etc could all be symptoms. Often these signs could be noticed more readily by people close to you than by yourself.

OK, so you have a definitive diagnosis and you know which type of dementia it is, what is the likely course, and how you can to change. Alzheimer’s Disease is the most common form of dementia. Maybe your symptoms show MCI (minimum cognitive impairment) which has a varied course. If you don’t have this information make sure you get it.  Your decisions depend on clear, honest and informed answers.

Dementia leads to death — but it is not a direct route. Some data show it is the third leading cause of death but, because it most often occurs in older folks, there may be other underlying conditions, like heart disease, cancer, diabetes, etc. which contribute to the mortality data.  On average a person can live 7 years after diagnosis. Many people who are healthy cannot rely on an underlying condition to speed up the process.

At this point the downhill course of the dementia is predictable (unless there is an effective treatment — or cure!!) Some experts describe 3 stages (mild, moderate, severe) some 7 stages.  Dementia is not that orderly. One day a person can be lucid but unable to speak coherently the next.   These changes come gradually so it is easy to drift into a stage where your mental competence is precarious.  But it’s also possible to make plans as symptoms increase. As the disease progresses a person may be unable to use good judgment, may get lost, may not remember where they live, may forget to get completely dressed, may mistake their spouse for a burglar, and more. The condition worsens leaving the person less able to make rational decisions.

Before rationality ebbs away — and preferably right after a definitive diagnosis — there should be decisions made —with people who care about you, caregivers, and your doctors.  Talk with them. It may be that you’d want to live to the end where you are severely demented, unable to care for yourself, not recognizing loved ones, and incontinent.  Or, you’re OK if your heart disease carries you away first. Maybe you’ll decide that the quality of your life is important and at some point death is preferable to helplessness, dependency, and loss of cognitive function. You have some choices.  Make them while you can.

In your advance directive you can indicate that when you are, say, unable to care for yourself, or when you can’t remember how to swallow, or can’t recognize your loved ones, are extremely agitated, or are committing acts of violence, that you want to refuse all treatment. That would include surgeries, antibiotics, dialysis, etc You can indicate that you want comfort care only with unlimited pain medication and sedatives. Assuming you can’t speak for yourself, you must appoint a health care surrogate or proxy to carry out these wishes. You must make it clear to that person what you want, and make sure they will follow your wishes, not their own. Your proxy only speaks for you when you can no longer speak for yourself.

If you want to stop living while you are still competent you have a few choices.  One is to “commit suicide.” That is, to use a possibly violent or unreliable method, like a gun or hanging. Robin Williams did this when confronted with the symptoms of Lewy Body Dementia. The football player, Junior Seau, shot himself in the chest so an autopsy could be done on his brain to determine the effect of his many concussions that were causing him to become demented.

A more gradual way to end life with dementia is to voluntarily stop eating and drinking. This is known as VSED and is a legal and frequently used method to bring life to an end.  It takes 7 - 14 days to die after the last fluid intake. During that time the person is in and out of a coma and will need 24/7 care. They will need to prepare for incontinence, thirst, weakness and possible hallucinations and delusions.  Caregivers not used to watching a person die and not providing food and fluid are not appropriate for this job. It is important to have access to medications for agitation, pain, or sleeplessness.  Sometimes a hospice will help, especially if there is a coexisting physical condition and the VSED is underway.

One organization that can provide information and support if the dementia is not too advanced is Final Exit Network.  They can counsel you and your loved ones about methods that can be used to peacefully end life but you have to be able to do it yourself

Dignitas and other Swiss organizations can also be helpful to a person with dementia who retains cognitive ability.  In all of these situations there is a narrow window of opportunity where the person can actively express the wish to die, and carry out what needs to be done to make it happen.

If you close that window and are no longer able to end your own life or ask for assistance or to follow instructions about how to do it you have entered another phase of dementia in which escape is more problematic. There are several things to consider. For one thing, where will you be if you need this level of care and, for other, who is responsible for you?

If you are a planner you might be counting your shekels to see if you can pay caregivers to take care of you when you start failing your Activities of Daily Living (ADL) tests. Often it is too difficult to be at home with caregivers.  At that point a Memory Care facility or nursing home is the only alternative if you need 24/7 oversight.

Should you decide you want to go on living and do not want to end it while you can still plan your death and have some quality of life, then you have to rely on a directive that goes into effect when you lack decision-making capacity and a health care proxy who will advocate for you. You can refuse all life-sustaining treatment but you will need a strong advocate to make it happen.

More problematic is directing that no food or fluid be given.  This is known as an SED-AD  (Stopping Eating and Drinking — Advance Directive) and is rarely followed totally. At best food is delivered, placed within the person’s reached, announced, and left.  At worst, if there is no movement toward eating, someone coaxes the person to eat by putting the spoon to the mouth and the food is swallowed reflexively.  This is at the point where you are unable to feed yourself. It is even more problematic if you were to have a directive that said “no food or fluid if I have to be cared for in a nursing home” but you could still enjoy food and could feed yourself — even help yourself to someone else’s food.  Because an institution could be accused of elder abuse they are reluctant to withhold nutrients, even defying an advance directive.  This situation will have to adjudicated in a court to determine the circumstances under which an incompetent patient can have such a request honored made when competent.

In the Netherlands and Belgium it is possible to execute an advance directive while competent that requests euthanasia when you lose decisional capacity.  The procedure involves ingesting sedatives in a drink then administering a lethal medication.  A recent case in Holland was of a demented woman who had made that request, was later given the sedative which didn’t take. She struggled, was held down, and euthanized. The court did not find the doctor guilty since she had made a valid directive which was clearly her wish.

On rare and uncounted occasions a patient receiving palliative care will be given drugs to provide deep sedation or coma until death occurs without giving artificial nutrition or hydration. This is done when symptoms are refractory to solutions that would ordinarily provide relief. It is helpful to hear from the health care proxy that this is what the patient would have wanted.

One solution families have considered is to discharge their loved one with dementia. They could take you home or to a hotel or an airbnb where relatives could take turns caring for you. They would continue to offer food but would not put it close to your mouth and definitely not provide spoon feeding. Depending on how frail the person is death would be expected in a week, maybe two.

Alzheimers' Associations will not advocate for or discuss the possibility that death could be a preferable alternative to many years of a demented existence. But they can be useful in sponsoring important research, in supporting caregivers, in providing respite care, and other services. Do not handle this dreadful disease alone. Take advantage of expertise and help but prepare for a debasing course of cognitive and psychological impairment. Think carefully about your choices and prepare for the one you and your loved ones agree on. Good life good death.

Faye Girsh, Ed.D., Founder of the Hemlock Society of San Diego

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