Compassion & Choices Honors World Alzheimer's Day With Dynamic Campaign

A public health campaign to encourage pre-planning in the event of a dementia diagnosis — with new informational videos and more — seeks to help address this healthcare crisis.

To commemorate World Alzheimer’s Day and address the national dementia crisis, Compassion & Choices launched a nationwide campaign to help people prepare in advance for a dementia diagnosis. The vast majority of Americans support the legal right to direct in writing how they want their healthcare handled should they become incapacitated. One in three older adults dies with some form of dementia -- the disease kills more people than breast cancer and prostate cancer combined, according to the Alzheimer's Association. This issue is especially timely because new scientific research indicates a rise of dementia in response to the current COVID-19 pandemic. 

Our campaign includes the promotion of our free online dementia planning tools and two new videos about the tools: one featuring a father and daughter explaining the dementia tools and the other highlighting a man with early-stage dementia who actually used the tools to plan for his care as his dementia progresses. Coverage of the campaign appeared in over 200 media outlets nationwide, including newspapers and radio programs.

“More and more people are suffering with dementia,” says President and CEO Kim Callinan, whose own grandmother died with the disease. ”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 National Director of Constituency Brandi Alexander in one of the videos. “African Americans and Latinos, for example, access hospice care at a far lower 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’ Dementia Values and Priorities Tool 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.

The Dementia Decoder 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 and human resources for Compassion & Choices. “And what the Dementia Values and Priorities Tools do is give 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.”


Check out Compassion & Choices’ free, helpful resources for caregivers and those living with dementia: