Frequently Asked Questions
Why a Dementia Directive?
Many people have clear ideas about the medical care they would want if they were to develop Alzheimer’s or another type of dementia.
Standard advance directives (also known as living wills) don’t usually cover dementia. Yet dementia is the number one reason people lose the ability to guide their own care.
This Dementia Directive is a simple and effective way to communicate your wishes if you were to develop dementia.
It's a way to be more sure that if you develop dementia that the medical care you’d get is closer to the care you would want.
Families often face difficult medical decisions if their loved one has dementia. With a Dementia Directive to refer to, they can feel more sure that the decisions they make reflect what their loved one would have wanted.
How was the Dementia Directive developed?
Barak Gaster and colleagues developed the Dementia Directive with help from experts in the fields of neurology, geriatrics, and palliative care.
A free version was released in November 2017. More than 100,000 people have downloaded a copy so far, and downloads continue at a rate of over 2,000 per month.
Feedback about the Dementia Directive has been very positive, with comments such as:
I had to fly blind with my mom’s dementia. I don’t want the same thing to happen to my kids. I gave a copy of it to all my friends. Everyone should have it.
I’ve worked for many years with people with dementia. Your document distills the most important issues about it. It’s simple and easy to use. Thank you!
My mom had Alzheimer's, she suffered for 8 years without being able to speak or understand. Having had this document would have helped our family so much.
When is the best time to fill out a Dementia Directive?
Once signs of cognitive impairment have already appeared, it can be difficult for someone to complete a Dementia Directive. So it's best for everyone to be given the chance to fill one out, before they develop dementia. This is especially important for people over age 60.
If you fill it out before age 60, make sure to make a reminder to yourself to review your answers when you get into your 60’s or 70’s, and to fill out a new form at that time to best reflect your more up to date wishes.
When should a Dementia Directive that someone’s filled out be used?
When someone with dementia is no longer able to understand the risks and benefits of a medical decision, then their health care agents and physicians must make the decision on their behalf through careful discussion.
When doing so, they should try to imagine what someone would have wanted, if they were able to look down on their current situation.
A Dementia Directive can be a useful guide for such discussions, to help family and doctors decide what someone would have wanted if they were still able to make decisions for themselves.
How does a Dementia Directive relate to other advance directives?
A Dementia Directive can be used as a stand-alone document to communicate one’s wishes.
It can also be included with other advance directive forms. Each state has a designated version of a standard advance directive, versions of which can be downloaded here:
If you have filled out a standard advance directive, then the Dementia Directive can be attached as an addendum or supplement to it.
The Dementia Directive is copyrighted. Does that limit its use?
The goal for the Dementia Directive is to be freely available to as many people as possible.
The purpose of the copyright is to ensure that no one is ever charged money for a copy.
If you would like to make copies for distribution to a large group, please send a message to firstname.lastname@example.org with an estimate of how many people the Dementia Directive was given to.
But ideally, each person who uses it should download their own copy from this website. That’s the best way for us to estimate how many people have received it.
For distribution to large groups, you might also consider distributing an overview of the Dementia Directive with instructions. Here is an overview which you are free to distribute to large groups:
Is this Dementia Directive legal?
The Dementia Directive available here is a written communication to help guide those who might need to make medical decisions on your behalf in the future. As such, it is a way to record your wishes.
The guidance it provides is not legally binding. Family members and physicians will still need to address clinical situations as they arise and decide how a dementia directive like this might provide guidance in a given situation.
That’s why it is important to talk to those closest to you (who might later help make decisions about your care) about your wishes, so that they understand as clearly as possible what your wishes would be.
Should I get the Dementia Directive notarized or witnessed? Should I initial every page?
If you are worried that your guidance might be challenged, then it is reasonable to sign this directive in front of a notary or in front of witnesses. Such attestation can be added as an additional page if one desires. Similarly, there is nothing stopping you from signing or initializing every page.
We opted not to include spaces for additional signatures on the form, in order to keep as low a barrier as possible to getting people to fill it out and share it with their loved ones.
About Barak Gaster
Dr. Gaster is a Professor of Medicine at the University of Washington School of Medicine. He has served as the medical director of the University of Washington General Internal Medicine Center and as the chair of the University of Washington’s committee on advance care planning.
Aside from seeing patients and supervising students, he also runs a training program for doctors to teach them how to identify dementia earlier and how they can help patients and families navigate the stages of this complex disease.