Many are familiar with the concept of an advanced directive. It helps family members and doctors understand the care you would like to receive when you are unable to make decisions for yourself. The standard advanced directive tends to address situations such as when you are in a coma or similar vegetative state.

Until recently, there has been no formal document that helps decision-makers understand the type of care you would like to have when you have cognitive decline.

Dr. Barak Gaster at the University of Washington in Seattle has developed such a document. He calls it the Advanced Directive for Dementia. It is a simple and straightforward document that outlines the type of medical intervention you would like to have at each stage of dementia. It is written in simple English and is easy to understand.

His directive identifies three phases of dementia: mild, moderate and advanced. For each of the phases, he provides the signer an opportunity to select the type of medical care desired.

For example, at each stage you might select that you would like to live as long as you could and would want full efforts to help prolong your life. At the other end of the care spectrum, you might want simply want comfort-oriented care which focuses on relieving suffering, pain, anxiety and you would reject care that would keep you alive longer. You might also specify that you would reject any care that would require you to move to a hospital or skilled facility.

Some experts believe that yet one more document on top of the pile of directives, wills and the like that our older loved ones have is unnecessary, and perhaps confusing. Yet Dr. Gaster has identified an important, overlooked gap in current medical planning. For anyone who has assisted a mother or father through the agonizing decline of dementia, the value that this document provides as a tool to promote conversation and the understanding of desires cannot be underestimated. Free copies of the document are available here.

Caring Corner

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About the Author:

Lorenzo Mejia and his wife, Mary Lynn Ryerson, are the owners of Acorn, a caregiver registry located in Chapel Hill.

They founded Acorn based on their experiences caring for his mom, who suffered with Alzheimer’s Disease. In 2013, he became a Qualified Dementia Care Specialist. In 2014, the Alzheimer’s Foundation named him the Dementia Care Professional of the Year in the United States.
Lorenzo is the founder of Dementia Friendly Orange County an effort to make local businesses more accommodating to people with dementia.

Lorenzo speaks often on dementia and the challenges associated with caring for loved ones. He has been interviewed by ABC News and National Public Radio. He is an advisor to Orange County’s OC-CARES Dementia Capable Community Project.