We all know we’re supposed to have a living will so our doctors and families will know what type of care we want (and don’t want) if we can’t decide for ourselves. For about a third of us, though, dementia will present a problem a traditional living will can’t solve. That’s because most living wills — also known as advance directives — only take effect after a catastrophic sudden change in your cognitive abilities, like a serious accident or stroke.
Dementia, however, affects decision-making in slower, more subtle ways, leaving patients competent to make simple choices but often overwhelmed by major decisions about treatment options.
That’s why a professor at the University of Washington School of Medicine developed a new type of living will. It lets you spell out the type of care you want at each stage of Alzheimer’s or another type of dementia. Barak Gaster, MD, serves as the Primary Care Liaison for UW Medicine’s Memory and Brain Wellness Center in Seattle. He wrote the document after seeing patients with dementia struggle with treatment choices they had to make for themselves. We spoke with Dr. Gaster about why he created his Health Directive for Dementia, when he recommends that patients fill out the document and how you can start a discussion with your loved ones about the type of care they want if they develop dementia.
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“When I started this, I thought the ideal time to fill out an advance directive would be at the earliest signs of dementia. But the reality is that even then, the cognitive process of imagining a future state and what-ifs is hard for people to do. There’s some fear and denial, but it’s also a complex and scary cognitive challenge.”
Based on his experiences with these patients, Gaster wrote his form for people who aren’t yet showing signs of dementia. It takes into account the different stages of dementia (mild, moderate and severe), and in straightforward language, his living will describes the typical symptoms and care needs at each stage. Each stage has four options for dementia care:
If you’re 50 or 60, you may wonder if you should go ahead and fill out the form for yourself now, just in case. But Gaster said age 65-70 is the ideal time to make your care choices, fill out the form and sign it. That’s because early onset dementia, beginning in the early 60s or even younger, “is exceedingly rare.”
While it might seem like a good idea to put your dementia care wishes in writing sooner rather than later, Gaster said if you did develop dementia a few decades from now, an old advance directive “could cause people to question whether those were still your wishes.”
The most important element of timing, however, is putting those care preferences in writing before dementia begins and complex decision-making skills start to decline. (For families with a loved one who’s already been diagnosed with dementia, Gaster recommends the Alzheimer’s planning tools created by the Conversation Project, a Boston-based nonprofit focused on end-of-life care.)
Most of us don’t like to think about our mortality and it can make for a very awkward topic of family conversation. However, talking about the possibility of dementia and planning for it can make the difference between a good end of life and one that’s unnecessarily painful and stressful for the whole family. Based on his experiences with patients and their families, Gaster recommends a “gentle, open-ended” approach to talking about dementia and care planning with your parents or other loved ones.
He suggests starting by mentioning someone you know who’s living with dementia and the kinds of challenges they face. Then you can ask “do you ever worry about getting dementia?” If your parents are willing to keep the conversation going, you can ask what kind of care they think they would want in that situation. “Then you can progress to, ‘there’s this tool that can help,’” and offer to show them the directive or print a copy for them to read and think about.
The possibility of developing dementia “is something that’s on people’s minds much more than they talk about it.” Even though it can be a hard conversation, or series of conversations, to have, Gaster said, “getting it out in the open and getting through that conversation can actually decrease their worry.”
That reduction in anxiety about dementia may be why Gaster has received such positive feedback from his patients, their families and the general public. He’s offered the form to “close to one hundred” patients in his practice and the response has been positive. Since his Health Directive for Dementia was featured in the New York Times and on National Public Radio, he’s been getting thank-you emails from some of the thousands of people who’ve downloaded the dementia directive online.
“Patients’ family members are saying ‘thank you for doing this.’” Dementia is a difficult condition to live with and to see in someone you love. By helping your parents plan for the care they want if they develop dementia, you can ensure that they have a say in their treatment and quality of life.
How have you or a loved one planned for dementia care? We’d like to hear your stories and suggestions for preparation in the comments below.