Advance Directives for Patients with Alzheimer's

Act Ahead of Time

We hear about the importance of having advance directives (ADs) in place in the event that we are permanently unconscious, or when illness becomes terminal and we are no longer able to make decisions on our own. We urge young, healthy people to think now about what they might want under those circumstances, to talk about it now with loved ones and to write it down now in a state-approved form.

ADs are of particular importance for persons with dementia, because nearly all dementias are progressive. Therefore, individuals with dementia can be expected to decline to a state in which they can no longer communicate their treatment wishes. They are then dependent upon caregivers, family, surrogates and physicians to make their healthcare decisions. 

Ideally, anyone who is diagnosed with Alzheimer’s disease has long ago completed an AD, or does so soon after diagnosis. But reality is never ideal. And even if healthcare decisions are written down in black and white, what of the other decisions that may need to be made throughout the life of a person with Alzheimer’s? When is the patient competent? When is he/she not?

Generally, a person is considered legally incapacitated when two doctors have tested and examined the patient and completed certificates of incompetency.

When There Is No Advance Directive

When there is no AD and family and professionals are assessing the competence of a person with Alzheimer’s, the Alzheimer’s Association urges “the least restrictive alternatives”—in other words, choose to protect the person’s right to make his/her own decisions whenever possible.

The Association endorses other principles that protect what it calls “respect for authority”:

• The wishes of a person with dementia should be considered whenever possible and until safety becomes an issue.
• Diagnosis of Alzheimer’s disease alone is not an indication of incompetence.
• Competent people have a right to reject any medical treatment. Many people with mild or moderate dementia retain this right, and it should be protected.
• A person with Alzheimer’s disease may lack capacities to drive, handle financial affairs, or live independently in the community, but retain the capacity to make competent decisions about place of residence and medical care at the end-of-life.
• Appointing a legal guardian for specific tasks, such as financial affairs, might allow a person with Alzheimer’s disease to maintain a degree of independence over other matters.
• Being uninhibited, remiss about hygiene, inclined to mishaps or unable to keep things tidy does not indicate mental incompetence.
• It may be appropriate to appoint a legal guardian to make decisions about property or finances, for example, yet leave other decisions—perhaps personal care, food, shelter and medical care—to the person with Alzheimer’s disease. 

The Importance of Legal Documents

It is important to plan for the incompetence of advanced dementia via legal documents, many of which vary according to the state in which the person lives. The most common include:

• Advance directives: Oral and written instructions about one’s future medical care, including the naming of a healthcare agent and acceptable life-sustaining procedures, in case one is unable to speak for oneself. It can take the place of two individual documents: the living will and the durable power of attorney for healthcare (also referred to as healthcare power of attorney, healthcare proxy, and appointment of a healthcare agent).
• Living will, which establishes one’s wishes concerning end-of-life care, the use of life-support systems, and the treatments one does and does not want.
• Durable power of attorney for healthcare, which assigns decision-making authority on medical matters to a particular person if one is no longer competent.
• Estate will, which describes how one’s property will be dealt with after death.
• Plans for one’s future care needs.
• Research directives to allow one’s participation in research studies.

An Advance Directives Specifically for Alzheimer’s Patients

In the last several years, a new advance directive has been developed allowing people coping with Alzheimer’s disease and dementia to document what their lives will be like when they are no longer competent. Called the “Alzheimer’s Disease and Dementia Mental Health Advance Directive,” it is legal in some states.

Its value, however, is not in its legality, but in its comprehensive look at life with Alzheimer’s. Issues include where you will live, how to finance your care, changes in an intimate relationship, when to stop driving and how pets will be cared for. Filling it out sends a message: I do not want another’s judgment substituted for my own. Whether or not the document is legal in your state, it is a clear guideline for loved ones.

A two-page “Values Worksheet” at the end of the six-page AD helps people think through their options. It can be filled out and shared with family, serve as a springboard to discussions or work literally as a worksheet.

Questions of Competency

By documenting your desires and care goals when you are well enough to make decisions, you remove a burden from your loved ones and exert more control on future decisions. Early documentation also prevents questions later about whether you had the capacity to make the directive when you did. (You cannot make any directive after you become incapacitated.)

If the person with Alzheimer’s is no longer competent and has completed no directive, decisions generally fall to the spouse. If that person is not able to do the job, decisions fall to the oldest child.

A better approach than asking any one person to be responsible is for the whole family to talk about the person with Alzheimer’s, how he lived and what he believed in. General agreements about what he would want help avoid family rifts when a difficult decision—like resuscitation or feeding tubes—must be decided.

We have the right to make our own healthcare decisions—even when we have Alzheimer’s disease. Making advance directives is not only a gift to loved ones, it’s a gift to the person with Alzheimer’s.

Therapies for Patients and Families

• Antibiotics—for infections in the urinary tract, due to bedsores, from aspiration pneumonia, or the like
• Artificial nutrition—nutrients provided via a tube into the stomach, intestine, or vein
• Chemical code—permits the use of drugs, but not cardiopulmonary resuscitation (CPR), for resuscitation
• Continuous positive airway pressure/Bilevel positive airway pressure (CPAP/BiPAP)—delivery of oxygen through a mask
• Cardiopulmonary resuscitation—mouth-to-mouth resuscitation
• Defibrillator or pacemaker—a device implanted in the patient to deliver a therapeutic electric shock to treat irregular heartbeats
• Dialysis—kidney machine
• Do Not Resuscitate order—instructions not to perform cardiopulmonary resuscitation if heart or breathing stops
• Feeding tube—nutrition through a tube down your throat
• Intravenous (IV) fluids—nutrition via fluid through a vein
• Total parenteral nutrition (TPN)—nutrition delivered through a needle or catheter placed in a vein. Also referred to as hyperalimentation
• Transfusions—often of blood or blood products
• Ventilator—breathing machine