PLANNING JUST IN CASE YOU ARE DIAGNOSED WITH DEMENTIA
“Eighty percent of our population over 85
has some form of dementia.”
NPR November 28, 2017
WHAT DEMENTIA IS & ISN’T
The Problem: There is no cure for dementia; sufferers die from the disease at the end. None of the ways for dealing with it are desirable (discussed below).
- A natural part of aging.
- Always genetic; there are many causes.
- The loss of all memories; long-past memories often linger.
- Memory loss can be from the secondary effects of other diseases, such as depression, mental illness and drug abuse. These memory losses are temporary if the underlying illness is successfully treated.
Dementias are not only irreversible, they are progressive. Progress perhaps can be slowed, but it is not stoppable. Therefore dementia’s are divided into stages, from three to seven, depending on the source. In this website, Alzheimer’s disease will be the focus, and will be considered in three stages, mild, moderate and severe.
- MILD/EARLY: Can’t do complex tasks, can’t express self well, gets lost, and occasionally can’t remember things from a few minutes ago.
- MODERATE/MIDDLE: All symptoms progressively get worse; sufferers advance differently with different symptoms. This stage is usually the longest; it can be many years.
- SEVERE/LATE: Short term memories are virtually gone, family is not recognized, hallucinations develop, and personality changes including irritability and hatefulness at times, even directed to family,
DEMENTIA SUPPLEMENTS AND THEIR POSSIBLE CONTENT
As mentioned in the planning section, there are supplements that can be added to basic advance directives. What might you put into your dementia supplement? Here possible content of such supplements is divided into two groups, passive and active.
Passive Dementia Advance Directive Provisions:
- Forego any treatment that will extend my life.
- Let any disease I have or may contract take it’s course.
- If I want to eat or drink, ok, but don’t encourage me to eat or drink.
Active provisions:
- Stop any treatment that is extending my life.
- Keep up my medications, including those that reduce pain, even if they will shorten my life.
- Keep me out of places (i.e., nursing homes) that won’t follow my wishes.
- Continue Voluntarily Stopping Eating and Drinking (VSED) if I’ve started it on my own while competent
THE PROBLEM OF INCAPACITY
As discussed in the section on Advance Directives, when someone has dementia they can’t (and aren’t allowed to) speak for themselves. If there is an advance directive, then the proxy speaks for him or her. When there’s a question about capacity, the attending physician, or others as well, makes the determination.
Incapacity can be tricky, especially when dementia is the cause. Diagnosis usually comes months or even years before incapacity sets in. One can have capacity in the morning and not in the afternoon.This is called Sundowner Syndrome
Since dementias are often diagnosed before capacity is lost, what are the planning choices before incapacity?
Basically there are only two:
- Live years with the disease and its progression until death.
- Choose to end your life before capacity is lost.
Choosing to end your life before capacity is lost could be, depending on your value system, the best choice.
IF DYING EARLY IS THE COURSE TO BE FOLLOWED, WHAT CHOICES ARE AVAILABLE FOR ENDING LIFE EARLY?
Of the methods discussed in the preceding section, Medical Aid in Dying (MAiD), even though enacted in your state, is probably not available because you have more than six months to live. This leaves:
- Death by violent means.
- Voluntarily Stopping Eating and Drinking (VSED), or possibly
- an inert gas.
VSED is often the choice and has become fairly common and accepted. Whatever the method chosen, it means that you are giving up some months, probably years, of a very acceptable life.
WHAT CAN YOUR HEALTHCARE AGENT/PROXY DO TO CARRY OUT YOUR WISHES IF YOU HAVE DEMENTIA?
The answer depends on what your wishes are. If your advance directive or your dementia supplement contains the passive and even the active provisions listed above, there’s no problem.
But what about the agent and the family instituting VSED? To explore this issue turn to the Deep Dive Section Advance Directives That Call for SED After Incapacity.
In the Advance Directive form in this website, page 2, the four items a.-d. under Choice #5 raise this issue, even though dementia is not mentioned because other causes may lead to the same possible choices. The issue raised in Choice 5 is explored in the Advance Directives section and, as noted above, in the Deep Dive section.