PLANNING JUST IN CASE YOU ARE DIAGNOSED WITH DEMENTIA

“When memory begins to fade, the wishes we expressed while we could still speak for ourselves can continue to guide those we love.”
— Final Exodus

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).

What is Dementia? It is not a disease but rather a general term for a number of diseases, the main one being . Other dementias are listed in the Deep Dive page.

Furthermore, dementia can arise secondarily in the late stages of other diseases, namely Parkinson’s, HIV, multiple sclerosis and alcoholism.

Dementia is often misunderstood.

It is not:

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.

Not only are dementias irreversible, they are progressive. Progression can sometimes be slowed, but it cannot be stopped. Therefore, dementias are divided into stages, from three to seven, depending on the source. On 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 SUPPLEMENTAL DIRECTIVES AND POSSIBLE CONTENT TO CONSIDER

As mentioned in the planning section, there are supplements that can be added to basic advance directives. 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:

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.
If I want to eat or drink, ok, but don’t encourage me to eat or drink.

Continue Voluntarily Stopping Eating and Drinking (VSED) if I’ve started it on my own while competent.
Direct that Stopping Eating and Drinking by Advance Directive (SED by AD) be instituted after you lose decisional capacity.

Several supplement forms with these kinds of provisions are listed in the Deep Dive and the Resources pages.

THE PROBLEM OF INCAPACITY

As discussed in the section on Advance Directives, when someone has dementia they can’t 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 make 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. Capacity waxes and wanes. A person can be considered not to have capacity one day, but the next might be a ‘good day’ and the person can demonstrate capacity.

Since dementias are often diagnosed before capacity is lost, what are the planning choices before incapacity?

Realistically, 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 the best choice depending on your values.

IF DYING EARLY IS DESIRED, WHAT CHOICES ARE AVAILABLE FOR ENDING ONE'S LIFE EARLY?

Of the methods discussed in the preceding section, Medical Aid in Dying (MAiD), even though enacted in your state, is likely not an option because you do not have less than six months to live. This leaves:

Death by violent means.
An inert gas.
Stopping Eating and Drinking (SED) Voluntarily before you permanently lose decisional capacity (VSED)
Stopping Eating and Drinking (SED by AD) via instructionSee the instructions in the Dementia Directive. in your Advance Directive.

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. The duration of life given up can be shortened in the few states that allow SED by AD.

WHAT CAN YOUR HEALTH CARE 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.

If you have been diagnosed with dementia, FinalExodus has an early dementia directive specifically for people who have been diagnosed with dementia.