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
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.” Florida has the nation’s 3rd highest rate of Alzheimer’s disease.
Compassion & Choices also released two videos about the dementia care planning tools. One of the videos features a man and his daughter showing how to use the dementia tools.
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.
ABOUT COMPASSION & CHOICES: Compassion & Choices is the nation's oldest and largest nonprofit organization working to expand and improve healthcare options for the end of life, with 450,000 supporters nationwide.