Is There an Advance Directive for People With Dementia?

Addressing the issue of dementia in an advance directive is an increasingly important priority for many seniors. With the number of Americans living with Alzheimer’s disease and other forms of dementia increasing every year, many people fear the loss of control over medical decision-making that a dementia diagnosis brings. To address this concern, the end-of-life advocacy organization Compassion & Choices has created a Dementia Values and Priorities Tool that allows you to identify and communicate to loved ones what you would like to happen in the event you are experiencing advanced dementia and can no longer speak for yourself. The answers you provide are digitally transferred to a Dementia Healthcare Directive Addendum that includes specific instructions for your medical providers, healthcare facilities and family. The document begins with the following statement:

I ______ am completing this document because I want my surrogate decision maker(s), physicians and health care team, family, caregivers and loved ones to know my wishes regarding the type of care I want if I am living with dementia.

The Dementia Values and Priorities tool is accessible both as a printable form available for download and an online version. The interactive online version of the tool is the only one of its kind and provides you with a document that can be included with your current advance directive. It is available in multiple languages and also includes key terms with videos to provide more detailed information about important concepts such as “artificial hydration” and “comfort care.”

In addition to the form created by Compassion & Choices, there are a growing number of similar tools available that allow you to outline the kind of care you would like or not like in a variety of circumstances. The Dementia Advance Directive created by End of Life Choices New York, for example, specifically addresses the institution of assisted feeding in a person with advanced dementia. Another option is the Advance Directive for Dementia created by Dr. Barak Gaster of the University of Washington Medical Center, which goes into much more detail about the kind of care you would want if you had mild, moderate or severe dementia. We recommend that you review each of these and make a choice as to which one is best suited to your needs.

Sources

“Dementia Advance Directive”. End of Life Choices New York. https://endoflifechoicesny.org/directives/dementia-directive/ 

“Advance Directive for Dementia”. https://dementia-directive.org/ 

“Dementia Values and Priorities Tool”. Compassion & Choices. https://compassionandchoices.org/dementia-values-tool/ 

“Alzheimer’s Disease Facts and Figures”. Alzheimer’s Association. https://www.alz.org/alzheimers-dementia/facts-figures