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 an advance care 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
Credit: uwmedicine.org

Ellary Allis: Can you give us a little background on yourself and your work?

Dr. Barak Gaster: I’m a primary care doctor at the University of Washington and a professor of medicine at the University of  Washington School of Medicine. For 20 years, I’ve had a job that includes a mix of seeing patients and doing research and curriculum development on the hardest issues facing primary care doctors. Over the years, I’ve written and worked on topics such as the complexity of talking to men about prostate cancer screening; how to treat chronic pain safely in a primary care setting; and how to talk to patients about the pros and cons and evidence behind herbal medicines. 

It was about four years ago that I realized that the hardest issue facing primary care doctors, and really society in general, is dementia. The number of people who are living with dementia is increasing quickly. We as primary care doctors are really struggling with how best to identify it in its early stages and how to help patients and families navigate through the stages of the disease. So, four years ago, I started building a curriculum for primary care doctors addressing how to identify dementia and help patients and families navigate through it. As part of doing that, I really wanted to focus on the process of helping patients and families with advance care planning, specifically as it relates to dementia. 

I started figuring out what kind of tools would be helpful for people in expressing what their wishes are if they were to have worsening dementia. I’ve been working on that with other colleagues here at the University of Washington, in fields like geriatrics and palliative care and neurology, to come up with advance directive for dementia. We published our work in the Journal of the American Medical Association about a year ago.  It was written about in the New York Times in January, and since then more than 100,000 people have downloaded the form from the website where it’s available for free for anyone that would like to take a look at it.

Ellary: When did you release it on your dementia-directive.org website?  

Dr. Gaster: It was almost exactly a year ago, right when the JAMA article came out in November. It truly didn’t have that much traffic until January, when the article came out in the New York Times, then there was a giant amount of interest. We had a really nice interview about the advance directive for dementia on NPR soon after that. Since then, it’s been a grassroots phenomenon. Between 500 and 1,000 people are accessing it each week all over the country.  

Ellary: What drew you to focus your energy on these more difficult aspects of primary care?

Dr. Gaster: My main job is to be a primary care doctor, and I think really hard about the issues that are most difficult for me as I go through my day. I talk to my colleagues about what they find to be the most difficult issues. I’m very involved with medical education at the University of Washington School of Medicine, so I supervise residents as they go through their continuity clinic during their three years of internal medicine training. In doing that, I also see which issues they end up struggling with the most. Those are the issues that are the most interesting to me and the ones I want to figure out how to approach in an efficient and family-centered way.  

Ellary: Do you have any thoughts on why the incidence of dementia is increasing so quickly?

Dr. Gaster: Yes, there are two things that are greatly contributing to that trend. One is that people are living longer than they have before. We’re doing a better job of treating heart attacks and cancer, so people are living into their 80s and 90s with a much higher frequency than before. There was also a demographic phenomenon that happened between 1945 and 1965 called the Baby Boom, where the number of live births in the United States had a huge spike. The result is that there’s a big population bubble today. The older baby boomers are now in their late 60s and early 70s, which is the age at which people start to become at risk for dementia. The fact that more baby boomers will live into their 80s and 90s than any generation before them, and the fact that there are a lot more of them, result in estimates that the number of people living with dementia in the United States is going to double and even triple in the coming years.  

Credit: twitter.com

Ellary: Why do you think most living wills don’t include plans for dementia?  

Dr. Gaster: As I set out in thinking about this problem, I looked for other examples of dementia living wills. I didn’t find much out there, and that’s partly because it’s a tricky issue to try and anticipate and give guidance for because it’s a complex disease that lasts for a very long time and goes through many different stages that are pretty different from each other. It’s not like you can say, “If I have dementia, I want this,” or “If I don’t have dementia, I want that,” because it’s not black and white, it’s a very gradual process of losing your cognitive function. 

What’s different about dementia is not only that it is very slowly progressive, so it changes very gradually, but also that for a very large portion of that time people have lost the ability to guide their own care. For other diseases that progress slowly, like heart disease, up until the very end people are perfectly able to make decisions about their care. So having a specific directive for all of those conditions doesn’t make much sense. Dementia is different because very early in the process people become less and less able to make medical decisions about their care. So that’s where you really need an advanced directive to express your wishes and give your loved ones something to reference to help guide them in the decisions that are often really hard for people to make.

Ellary: What does the dementia advance care directive include that specifically relates to dementia?

Dr. Gaster: The way that we ended up structuring it was by thinking about dementia in three broad stages: a mild, moderate and severe stage. For each of the three stages, we present a brief description of the milestones that mark that stage for most people. Under those three descriptions, we give people four options to choose from in terms of what they would want the goal of their medical care to be. It allows people to express how they want the goals of their medical care to shift as the disease progresses.  

Ellary: Do you give the form to healthy people as well, or only people that have developed signs of dementia already?

Dr. Gaster: When I was first developing the form, I thought the most important time for people to fill it out would be at that very earliest stage when there was detectable signs of dementia. At that point, it would be clear that someone would need a directive like this and that would be a really important window of time to help them fill it out while they were still able. But I found that only a small number of people who I’d diagnosed with mild cognitive impairment filled out the form. The majority of the time people seemed like they were grateful and promised that they would take it home and think about it, yet they they almost never brought the form back. 

Then, instead of giving it to people I was diagnosing with early stage memory loss, I just started giving it to everyone. I gave it to all of my patients who were there for their regular check-ups, starting at age 65 or 70. Remarkably, I found that 70 or 80 percent of people without cognitive impairment started returning the forms to me. That’s when my thinking shifted. I began thinking the best time for somebody to fill a form like this out is when they hit the age when they are at significant risk of developing dementia — around 65 or 70 –before they develop any signs of cognitive impairment. It’s more difficult for people with mild cognitive impairment to fill out the form, for reasons I will go into.    

Check back next week when we continue our conversation with Dr. Barak Gaster about the Advance Directive For Dementia.