An Advance Directive Designed for Living with Dementia

Advance care planning—the process of trying to specify the kind of medical care and treatment you think you might want in some future circumstance when you could no longer speak up for yourself—is often resisted by people who’d rather not contemplate such dire circumstances or else are put off by the documents and their legal jargon.

But what if the future circumstance involved Alzheimer’s disease or another form of dementia—a terrifying but common diagnosis for older people? Some 5.7 million Americans are living today with Alzheimer’s disease and worldwide the number is expected to grow from 47 million in 2015 to 132 million by 2050.The need to know patients’ values and preferences for medical care is greater with dementia—but so is the intimidation factor. “On the one hand, it’s something nobody wants to think about or talk about,” says Dr. Barak Gaster, a primary care physician and medical educator in Seattle, Wash. “But it’s on many people’s minds, especially if they’ve had first-hand experience with a loved one with dementia and know what they wouldn’t want for themselves.”Dr. Gaster has developed a new process for expressing wishes and preferences about possible treatments for such a future state of progressive loss of brain function—a kind of living will for dementia. He says that his patients, to whom he recommends it, and those who have downloaded his Advance Directive for Dementia, express gratitude for its help in getting a handle on something that they already worry about—even though actual need may be far in the future.“About four years ago, I realized that dementia was really the hardest issue we as primary care physicians face, and that our patients face. So I developed a program to train primary care doctors to do a better job of identifying dementia and helping their patients and families navigate through it.” Even though Alzheimer’s is not curable at this time, important things can be done based on a diagnosis, he explains. For example, “Just aligning care and treatment better with what people say they want.” Other opportunities might include retiring from driving, avoiding harmful drug interactions, and doing legal or financial planning."As I started thinking about what primary care doctors could do to better engage with this disease, I looked at our existing advance directive approaches and forms and realized that they don’t apply to dementia patients, who might live for years following a diagnosis.” Yet dementia is the leading reason why a person might lose the capacity to make decisions about their own medical care, such as whether they would want to be hospitalized, or have a feeding tube, or even get antibiotics for pneumonia. These could prolong a life that one might not want to prolong after losing the ability to communicate or recognize loved ones.Gaster’s document might be helpful in saying no to burdensome medical care in situations where many would not want it to continue. But it also offers people the option to specify more medical intervention, not less. This approach does not involve medical aid-in-dying, which is a legal option in seven states but only applies to patients who have the mental capacity to choose it. Patients with advanced dementia don’t qualify for aid-in-dying.The Point of Diagnosis May Be Too Late"In working with his own patients, Gaster discovered that even the earliest possible diagnosis of mild dementia might be too late for wrestling with the complex issues involved in planning for future medical care. His document offers a range of possible treatment options for mild, moderate or severe dementia, encapsulated in the following choices: living as long as possible; receiving life-prolonging care but not cardio-pulmonary resuscitation; receiving care only in one’s current residence, not in a hospital; and receiving comfort-oriented care only. Now he shares the advance directive with his patients at the time of their first annual physical assessment under Medicare when they turn 65 and enter the age bracket where a future diagnosis of dementia might not be far-fetched.Subhan Schenker, who co-directs a meditation center in Seattle, is a patient of Gaster and downloaded his advance directive form. “When I first heard about advance directives for dementia, I was very interested. I am 72, and I have seen that the aging process has its benefits, if there is a foundation of deeper understanding,” such as through a meditative practice. Schenker was a criminal lawyer in Baltimore before meeting a teacher of active meditation in India in 1979 and discovering his affinity for the practice.“An incident that brought this issue home to me recently was when I was taking statins for angina and started having short-term memory issues as a consequence of the medication. So I changed to natural alternatives and my short-term memory returned. But when I was losing my short-term memory, I was able to use the experience of just watching it in a meditative state, rather than freaking out.”Schenker filled out the form developed by Gaster and shared it with his doctor, his wife and his daughter. “I’m not someone who wants life at all costs. I understand clearly that quality of my life would be a factor in what I would want. If I were in a state of mental deterioration, I would be pleased to get comfort-oriented care, but I wouldn’t want to live as long as humanly possible after I lost the ability to communicate,” he explains. “If I were sitting outside of myself at that point, I’d say: You know what? It’s time to move on.”The Legal Questions Are Less ImportantGaster’s form is one of several documents developed recently to help people think about and capture what would be important to them were they to develop dementia.The Conversation Project, which promotes advance care planning conversations nationally, has an Alzheimer’s/Dementia Starter kit. End-of-Life Washington has anAlzheimer’s Disease and Dementia Mental Health Advance Directive, and End of Life Choices New York has its Advance Directive for Receiving Oral Food and Fluids in the Event of Dementia.For Gaster, the legal questions are less pressing than just getting people to think and talk about what would be important to them while they are still able to do that. His directive does not include a place for a witness or notary, which can be a barrier for some people. It could be challenged legally if there were a family conflict. But most legal advance directive forms permit a personal addendum, for which his directive qualifies.“I am the chair of the Advance Care Planning Committee at the University of Washington, and the reality is that standard advance directives aren’t that useful in most situations,” Gaster says. They are designed to address narrowly defined situations like coma, persistent vegetative state or terminal illness—rather than the more common experience of dementia.”He urges people of Medicare age to download, carefully review and fill out his form. “Then, absolutely, talk to as many family members and friends as possible. Make copies; give them to your family and your doctor. If you don’t know what kind of medical care you’d want, then who is the person you would want to designate to make these decisions for you? Perhaps the most important thing is to make sure you have a clearly identified health care proxy.