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To Address Dementia Crisis Fueled by COVID-19, Group Releases Dementia Care Planning Tools

NORC survey shows most Americans feel people should have legal right to decide in advance to stop medical treatment if they get dementia

Dan Winter and his husband John Forsgren

Dan Winter and his husband John Forsgren.

To commemorate World Alzheimer’s Day and address the national dementia crisis, Compassion & Choices today released two fully customizable, online planning tools to help people determine their healthcare wishes in advance if they are diagnosed with dementia and allow people with advanced dementia to stop medical treatment if they want and die naturally.

In a 2018 NORC AmeriSpeak omnibus survey about dementia, 80% of Americans (including 82% of Whites, 68% of Blacks, 85% of Hispanics, and 75% of others) agreed: “A person should have the legal right to put in writing in advance that they would like their caregivers and medical team to stop medical treatments, food, and liquids that keep that person alive. It’s wrong to force somebody to live for years in a condition they consider worse than dying.”

Dementia afflicts one out of three dying seniors, killing more people than breast cancer and prostate cancer combined, according to the Alzheimer’s Association. This issue is timely because new scientific research indicates: “…a rising wave of dementia in the wake of the current COVID-19 pandemic … Delirium affects up to half of hospitalized older adults and increases the risk for dementia in the long term.” The 10 U.S. jurisdictions with the highest rates of Alzheimer’s disease are: 1) District of Columbia, 2) Texas, 3) Florida, 4) Connecticut, 5) Alabama, 6) Louisiana, 7) Arkansas, 8) Michigan, 9) New Jersey, and 10) New York.

Compassion & Choices also released a new video about the dementia care planning tools. The video features a man with early-stage dementia from Portland, Oregon, Dan Winter, who used the tools to plan for his care as his dementia progresses. It also shows a man and his daughter showing how to use the dementia tools. This video is posted at youtube.com/watch?v=Vslqgu9A4YE&feature=youtu.be

“There’s a series of about 15 questions that the person answering them gets to use to ponder what I will live with and what I won’t,” Dan Winter explains in the video. “It gave my husband [John Forsgren] and I a very practical way to look at how I wanted to live and what I wouldn’t live with.”

“More and more people are suffering with dementia,” says Kim Callinan, president & CEO of Compassion & Choices.” There hits a point when their quality of life is really pretty dismal. And most people, our survey data shows, don’t want to live that way.”

“Just as there are healthcare disparities, there are also those that are specific to the end of life,” says Brandi Alexander, national director of constituency for Compassion & Choices, in the video. “African-Americans and Latinos, for example, access hospice care at a far less rate than other communities, and for that we tend to suffer more at the end of life. What we have found doing our outreach to communities of color is that there is an educational gap around end-of-life resources and end-of-life options. And the value of the Dementia Tools is that it’s a really simple and easy form that takes you step-by-step through the process.”

Compassion & Choices’ new Dementia Values & Priorities Tool (values-tool.compassionandchoices.org) walks people through 15 common symptoms of dementia and helps people to identify if and when their goal for care may change from “do everything possible” to “allow for my natural death.” What makes this tool unique is it’s fully customizable, providing tool users with 15 stages of disease symptoms to help them decide if and when they want to change their healthcare preferences. The user also can add their own dementia symptoms that would prompt them to change their healthcare preferences. Most other healthcare planning tools are static, unchanging paper documents that allow for only a small number of choices and do not specify symptoms. This tool also allows users to create a Dementia Healthcare Directive to add to a standard advance directive. It empowers healthcare proxies to implement critical, informed decisions — guilt-free — on a patient’s behalf.

Compassion & Choices’ Dementia Decoder (diagnosisdecoder.org/decoder/dementia) allows users to indicate the current status of their dementia diagnosis, specify what they hope to learn and accomplish from an upcoming clinical appointment and customize that experience from a list of helpful questions. Responses can then be printed or emailed to a provider or family member to ensure that these high-stakes medical appointments allow for the important discussions that everybody in the room needs to be part of.

“I think it’s really important that we are addressing the diversity, equity, and inclusion factors with the dementia tools, particularly because we’re dealing with communities who have been disenfranchised by the healthcare system and disempowered by the healthcare system,” says Jonathan Patterson, national director of diversity, equity, inclusion & human resources for Compassion & Choices, in the video. “And what the Dementia Values and Priorities Tools do is that it gives the power back to these communities. The tools allow your loved ones to advocate for your best interests when you’re no longer able to advocate for yourself.”

“What our research and our data shows is that when people document their preferences and figure out what it is that they want, that they’re able to spend their remaining time living their life fully,” concludes Callinan in the video. “They’re no longer worried about what’s gonna happen if or when; they can focus on the here and the now.”


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