Ask the doctors: Writing a dementia-specific advance directive

Dear Doctor: I recently read about advance directives that deal only with dementia. Is there some benefit to those over the more traditional directives? If so, how do I go about creating one?

Dear Reader: Most of us are probably familiar with the concept of the advance health care directive, which is sometimes referred to as a living will. It’s a legal document that outlines your specific wishes regarding medical and health care decisions, including end-of-life care, in the event that you are unable to do so.

But with the number of people living with dementia expected to nearly triple worldwide by 2050, some in the medical community now see a need to expand the scope of the advance directive. This was formally addressed in an opinion piece in the December 2017 issue of the Journal of the American Medical Association, where the authors made a case for crafting an advance directive specifically for dementia.

Their thinking is that because dementia is a disease that progresses in stages, a person’s health care goals should similarly follow a gradual trajectory. Cognitive decline often occurs over the course of years or even decades. That means that standard advance health care directives , which dictate decision-making in times of crisis, aren’t always the right fit. With a dementia-specific advance directive, the individual addresses a range of questions based on how cognitive decline typically progresses. Not only does this allow them to make specific choices regarding health care and quality of life, it frees family members from difficult decisions and painful arguments. This includes decisions about undergoing a range of medical tests, medical care and end-of-life interventions.

The dementia-specific advance directive proposed by the authors of the JAMA essay divides cognitive decline into three phases – mild, moderate and severe. The individual indicates his or her health care goals for each phase of dementia.

These goals are further broken into four stages. The first stage is living as long as possible, which includes accepting all medical interventions, including restarting the heart should it stop beating. The second stage is to receive certain types of medical care but to decline efforts to restart the heart. The third stage indicates a person’s wishes to receive limited medical care, and only in the place where they are living, not in a hospital. The final stage is a request for palliative care, which means addressing only the comfort of the patient, with no efforts to prolong life.

Questions about treatment like antibiotics, the placement of a pacemaker, the use of dialysis, blood transfusions, respirators or feeding tubes can all be addressed within the framework of the document. The authors stress that this type of advance directive must be filled out before any signs of dementia have presented themselves, and the document should be revisited regularly for amendments and updates.

As with all advance directives, it’s important to have these documents drafted by an attorney so they will be legal in the individual’s state. And it’s vital to have copies readily available for when they are needed.

To learn more, or to create your own document, visit dementia-directive.org.