What Is The Advance Directive For Dementia?

Dr. Barak Gaster is a primary care physician and a professor of medicine at the University of Washington who has developed the Advance Directive for Dementia. Through his work, he realized that dementia is one of the most difficult issues facing primary care physicians today. Dr. Gaster has gained a national reputation for looking at problems in medicine and creating solutions. 

Editor’s note: This interview has been edited for length and readability.

Dr. Barak Gaster

Ellary Allis: How difficult is for someone with mild cognitive impairment to fill out the advance directive for dementia?

Dr. Barak Gaster: I didn’t mean to imply that someone with cognitive impairment couldn’t fill the Advance Directive for Dementia out. Most people would still have the decision making capacity to do so. However, one of the reasons it’s harder for someone with mild cognitive impairment to fill a form like this out is because of the fear and shock of the diagnosis and the resulting emotional paralysis that happens. And even after they have more or less settled into acceptance around it, someone with mild cognitive impairment would have more difficulty imagining the future state of  being faced with abstract medical scenarios, and then imagining what that future self would want. That’s a much more complex decision making process for someone with cognitive impairment to go through. 

Many people still could do it, and it can be meaningful when they do. But it’s just going to be a lot harder because its a complex executive function task that people often have trouble with. The NPR show I was on was a call-in show, and one of the callers had mild cognitive impairment. He described having the advance directive form on his countertop for over a year and how hard it was for him to fill out. He got really emotional talking about it. It was a poignant moment that really did help crystalize for me why filling out an advance directive form is hard for people with even mild cognitive impairment. 

In the curriculum that I’m building for primary care doctors to help patients and families navigate through a dementia illness, advance care planning plays a big part. I focus on offering people the opportunity to fill out an advance directive while acknowledging that that’s going to be really hard. Rather that focusing right way on advance directives for people with mild cognitive impairment, it’s helpful for people to try to ground decision- making in the here and now — for example, what someone would want if they went into respiratory arrest, what would they want if they developed pneumonia. And then I focus on facilitating the hard conversations people have to have with their families to make careful and reasoned medical decisions that take into account what they think their loved one would have wanted at that point in their dementia. And having a dementia directive can help inform those conversations. It can really help make those decisions better decisions, because the family can have more confidence that the decisions they’re making are aligned with what their loved one would have wanted. 

Ellary: That sounds really helpful. Can you talk about what the Memory and Brain Wellness Center is and what your role is?

Dr. Gaster: The University of Washington has a phenomenal program whose mission is to provide medical care and do research and community outreach for patients with dementia called the Memory and Brain Wellness Center. I’m their primary care liaison. Most of the staff of that center are neurologists, neuropsychologists, psychiatrists and social workers, and they are really aware that the role of the primary care doctor is important in terms of helping to support them in their specialist roles. They also recognize the role of primary care doctors in long term care for dementia patients and making the best referrals for patients. The specialists really need to be partnered with enlightened primary care doctors. I’m working on that aspect.  

Ellary: You recently had an op-ed published in the Seattle Times. What was that about?

Dr Gaster: It was specifically about why it’s so important for us to be talking about dementia. We need to bring the disease out of the shadows and help the public and primary care doctors feel less afraid of talking about it and facing it. By far the most important thing is to make it clear that the directive is available and free for anyone to download and look at. 

Dr. Barak Gaster

Ellary: Does the Advance Directive for Dementia need to be witnessed or notarized? 

Dr. Gaster: The Advance Directive for Dementia does not need to be witnessed or notarized. We really thought hard about whether we should have a place for witnessing or notary in the dementia directive, and ended up deciding not to do so. When you put spaces like that on a form or an advance directive, it’s going to decrease the number of people who will fill it out. It’s going to be an obstacle in getting them to do it, because there’s that added process of finding witnesses or finding a notary.

We also need to take advance directives out of people’s security deposit boxes where nobody knows what they are or what they say. It makes sense that that’s where a will would be kept, but in terms of a document that can really help guide care while somebody’s still alive, you don’t want it locked up somewhere in your lawyer’s office. You want it somewhere accessible. You want your family to have copies of it if needed. For that reason, we decided not to have a place on the Advance Directive for Dementia for people to witness or notarize it, with the idea that it’s never going to be a locked in legal document. It’s a communication tool, a way to express what your wishes are, to document them and share them with your loved ones who would be the people that would need to make medical decisions on your behalf if you had dementia.

Ellary: What legal documents should a person with mild cognitive impairment be sure to fill out?

Dr. Gaster: The most important legal document for someone to fill out if they are diagnosed with mild cognitive impairment is a Durable Power of Attorney for Healthcare form. Each state has a very legally binding document with which someone can identify who they would want their health care proxy or decision maker to be if they were unable to make decisions for themselves. In most states, if the document isn’t filled out, there is a hierarchy that determines who the decision maker would be if the person wasn’t able to make decisions for themselves. Usually the spouse is number one, and then there’s variations on whether the next in line is children or parents, and on from there. 

What’s really important about mild cognitive impairment is that it is a disease that, in most people, has a 10 or 15 or 20-year time horizon to it. Identifying who the person would want to be the backup to their legal default is really important because people with mild cognitive impairment might outlive their spouses. It’s important for them to legally identify who they would want their health care proxy to be if their spouse wasn’t available  while they still have the mental capacity to do that. 

When you get to living wills, it’s a little bit fuzzier as to just how legally binding they are. They’re mostly tools to communicate and express your wishes as to who the health care proxy or durable power of attorney for healthcare is. However, they tend to focus on issues that are really rare, like if you’re in a persistent vegetative state or a permanent coma. That is a tricky and sometimes contested situation, so having it witnessed and notarized is good. Every state that has its own statutory living will almost always has a place on it for it to be witnessed or notarized.  

Ellary: Thank you, Dr. Gaster, for speaking with me today and sharing your insight and expertise. I’m sure our readers will find this very informative. 

Dr. Gaster: You’re welcome.

In case you missed it, you can find Part One of our interview with Dr. Barak Gaster here.