Dementia Specific Advance Directives More Prevalent

An increasing number of people will experience dementia. Worldwide, the number of people living with dementia is projected to increase from 47 million in 2015 to 132 million by 2050.

Family members and clinicians are often unsure whether the care they provide for patients suffering dementia is the care that patients would have chosen. Across the care spectrum, including skilled nursing facilities, hospital wards, intensive care units, and outpatient clinics, family members and clinicians commonly encounter this dilemma.  

In light of this concern, Paula Span has penned an excellent article One Day Your Mind May Fade. At Least You’ll Have a Plan in the New York Times as part of the New Old Age Series.  The article discusses advance directives for those with dementia.  The article follows a recent article published in the Journal of the American Medical Association (JAMA).  

According to these articles, existing advance directives are not particularly helpful for those with dementia because of the way dementia progresses over time with corresponding diminishing cognitive function.  The New York Times article explains:

"Although [dementia] is a terminal disease, dementia often intensifies slowly, over many years. The point at which dementia patients can no longer direct their own care isn’t predictable or obvious. ... Moreover, patients’ goals and preferences might well change over time. In the early stage, life may remain enjoyable and rewarding despite memory problems or difficulties with daily tasks."

The dementia-specific directive describes the person's wishes  as "goals of care" and offers four options for each stage of dementia, directing the person to "[s]elect one of the 4 main goals of care listed below to express your wishes. Choose the goal of care that describes what you would want at this stage."  The directive divides dementia into three stages, mild, moderate and severe.

The purpose of the dementia-specific advance directive is to express your wishes based on the specific "phase" of dementia you may enter in the future.  The website for this directive is here from which the 5-page directive may be downloaded.  The NY Times article describes that the directive:

"...in simple language...maps out the effects of mild, moderate and severe dementia, and asks patients to specify which medical interventions they would want — and not want — at each phase of the illness."

There are already a number of types of advance directives, with recent pushes for Physician Ordered Life Support Treatment (POLST) and other initiatives, such as the Conversation Project, and the Five Wishes.