Recent polls point up what you might have already discovered in casual conversation: Most people fear getting Alzheimer's disease more than they fear heart disease, stroke, diabetes, or cancer. Some even fear it more than dying.
Alzheimer's, a degenerative brain disease, is ultimately fatal, although most individuals live an average of 10 years after a diagnosis. Many say that's most terrifying to imagine: a decade of living on, unable to care for themselves, express their wishes, or be understood by others.
For most, that fear is paralyzing: More than 80% of those queried in a recent MetLife Foundation survey admit they've done nothing to plan ahead for the possibility.
Yet a simple legal document, an advance directive, can make your wishes for medical care clear. Without a directive, caregivers are left to guess at and grapple with decisions about your medical care. There are frequently heated disagreements, even in the most harmonious groups, that are stressful and counterproductive.
For those concerned about Alzheimer's, however, there are a number of practical steps that can help ensure that your wishes for care will be honored.
Complete an Advance Directive
Advance directive is the umbrella term that covers powers of attorney for healthcare and living wills, although the specific document names differ by state. Such documents enable you to direct medical care in advance, in case you become unable to do so later. You can to limit, refuse, or stop treatments and name an individual, usually called an agent or proxy, to supervise your wishes.
State laws differ as to the form and format for advance directives, and doctors and hospitals may work most easily with those forms familiar to them. Be wary of sources that charge for advance directive forms, or of lawyers who bill extravagantly to prepare them.
You should be able to get acceptable forms free from a local hospital or clinic. You can also download state-specific forms from Caring Connections.
Do It While You Can
The law requires that people completing advance directives must be "of sound mind." Generally, a person must be able to understand what the document is and does -- and be able to understand that he or she is signing it. This requirement isn't too onerous; most people in the early or even middle stages of Alzheimer's can satisfy it, although it is best to act quickly, ideally before a diagnosis.
Ask Your Doctor -- Really
"Ask your doctor," the phrase much-parroted on drug commercials, has a murky meaning these days, particularly since most older patients get medical care from a bevy of specialists.
But if you're concerned about having your medical care wishes honored, seek out one or two practitioners who are willing to listen and learn about you. A doctor familiar with you and your physical condition should be able to help you make the best choices when completing an advance directive. Your directive can specify what doctors can certify if and when you lack mental capacity, signaling when your directive should take effect. That crucial job is best handled by someone who knows you.
Talk About It
Insist on discussing your medical care wishes with family members, close friends, and people you name as agents -- even those who may seem reluctant to listen. This can help assure that you get the care you want, and it will likely provide welcome guidance for those charged with overseeing it.
As a practical matter, such discussions may also uncover individuals whose values and beliefs about care differ from yours -- which might mean you need to name a different agent to help enforce your directive. If you anticipate conflicts or misunderstandings, it's wise to underscore your wishes in a letter, a video, or both. While these will not be legally binding, they will likely exert a powerful pull on those supervising your care.
Review your advance directive -- every six months is a good standard -- to make sure it reflects your current thinking, especially since rapid medical advancements may affect your choices. Note the review date on your paper or electronic calendar. Or use another regular event as a reminder: If, for example, you have a dental exam twice a year, make that your review date.
Get More Information
For more on advance directives, see Caring.com's Living Will Learning Center.
For help in completing a directive, see the Alzheimer's Association online pamphlet "End-of-Life Decisions: Honoring the Wishes of a Person With Alzheimer's Disease." Especially instructive is the section titled "Understanding Treatment Options at the End of Life," which discusses the pros and cons of various medical procedures.
For additional Alzheimer's-related concerns, Compassion & Choices offers a unique Alzheimer's disease/dementia mental health advance directive. It covers an array of matters to consider -- from consenting to drug trials to financing care to stating preferences about continuing intimate relationships with a partner or spouse.