New Tools for End-of-Life Decisions for People Battling Dementia

Compassion and Choices
Statistics show Florida has the fourth-highest rate of Alzheimer’s disease in the country. Doctors are trained to save lives at all costs, but a 2018 poll about dementia found 80% of Americans think it’s wrong to force someone to live for years in a condition they consider to be worse than dying. Photo credit: Compassion and Choices.

TALLAHASSEE, FL — Today, in honor of World Alzheimer’s Day, a new online tool makes its debut to help people decide whether they want doctors to prolong their life, in the event they are diagnosed with dementia and then get a terminal illness.

Doctors are trained to save lives at all costs, but a 2018 poll about dementia found 80% of Americans think it’s wrong to force someone to live for years in a condition they consider to be worse than dying.

Kim Callinan, president and CEO of the group Compassion and Choices, said patients often don’t realize they don’t have to undergo painful treatments or procedures.

“There is another option,” Callinan said, “Which is that you could keep the person comfortable, allow them to be free of the symptoms so that they are not suffering, but allow that other disease to end their suffering and reduce the length of time that they live in a state of advanced dementia.”


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Statistics show Florida has the fourth-highest rate of Alzheimer’s disease in the country.

The Dementia Values and Priorities tool on the Compassion and Choices website helps people decide which treatments they want, or don’t want, at each stage of the disease. And a Dementia Decoder helps people figure out how far their disease may have progressed.

Callinan said it’s important for people to make decisions about these issues themselves, while they still can. And it makes things much easier on their caregivers, as well.

“And it takes the guilt and guesswork out of caregiving,” Callinan said. “Because that person doesn’t have to think about, ‘What would this person want in this situation?’ They’re able to use the tool to guide their care decisions.”

The group is also releasing two videos today on its website, one that explains how to use the online tool, and another that traces a patient’s journey as he uses the tool to make important decisions regarding his care.

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